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Learning with peers: a descriptive study of Hope Cancer Health Centre Rae, Jean Berkeley 1994

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LEARNING WITH PEERS:A DESCRIPTIVE STUDY OF HOPE CANCER HEALTH CENTREbyJEAN BERKELEY RAEB.Sc.N., University of British Columbia, 1963A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF ARTSinTHE FACULTY OF GRADUATE STUDIES(Department of Administrative, Adult and Higher Education)We accept this thesis as conformingtojJje required sta dardTHE UN RSITY OF BRITISH COLUMBIAApril 1994© Jean Berkeley Rae, 1994In presenting this thesis in partial fulfilment of the requirements for an advanceddegree at the University of British Columbia, I agree that the Library shallmake itfreely available for reference and study. I further agree that permission for extensivecopying of this thesis for scholarly purposes may be granted by the head of mydepartment or by his or her representatives. It is understood that copying orpublication of this thesis for financial gain shall not be allowed withoutmy writtenpermission._________________________________Department of /t’ /i’ /Li’La iL/rj.jit&,’The University of British ColumbiaVancouver, CanadaDate_____________DE-6 (2188)11ABSTRACTSelf-help groups have emerged as a system of care for groups of peoplesharing a common problem or condition. Most of the interest in research camefrom professionals in mental health and social services. Educators havetraditionally viewed self-help groups as outside their domain. The focus of thisstudy is the phenomenon of personal change within self-help groups. This isviewed as “learning with peers.”The subject of the study was HOPE Cancer Health Centre, a non-profitcommunity based self-help organization in Vancouver, B.C. Appropriate to thestudy of phenomena in their natural surroundings, data collection methods werequalitative in nature. Fourteen in-depth interviews were carried out withmembers and leaders of the self-help group. Two introductory workshops wereattended for participant observation and several pertinent documents werereviewed. A full description of HOPE Cancer Health Centre as a self-help groupand as a context for adult learning was developed. To clarify the description ofHOPE, a framework of characteristics of self-help groups was developed. It wasused to organize data collection and analysis. Compilation and analysis of thefindings created a description of HOPE that adds to the understanding of self-helpgroups as organizations in a larger system of care provision. It also adds to theunderstanding of HOPE as an organization with the purpose to assist cancerpatients who are interested in actively participating in their cancer treatment andrecovery.U’In order to enhance understanding of adult learning in the context of a self-help group, three perspectives from the literature on adult learning were selectedfor their potential to organize and explain the resulting data. Four importantthemes emerged from the data on the learning experiences of the members ofHOPE. First, the ideology of HOPE, “self as participant in healing,” is theframework of learning and within that frame there are four forms of learning, theforms of transformative learning being the most significant. Second, for thelearners of HOPE, the basis of knowledge is their personal experience; therefore,processes of experiential learning are important as well as those of perspectivetransformation. Third, the affective dimension of the experiential learning processwas found to be integral in the process of learning. The fourth theme is “learningwith peers,” the innate characteristic of self-help groups. All members interviewedplaced high value on their experiences of learning with peers and of learning atHOPE. Meaningful interpretation of the data resulted from application ofconcepts and theoretical propositions from three perspectives on adult learning:experiential learning, transformative learning and situated learning.ivTABLE OF CONTENTSAbstract .Table of Contents ivList of Figures . xAcknowledgments xiCHAPTER ONE: INTRODUCTION 1Statement of the Problem . 1Purpose of the Study . 4Site of the Study . 5Research Questions . . 8Research Design and Methodology . 9Organization of the Thesis. . . . 11CHAPTER TWO: CANCER AND CANCER CARE . 13The Social Reality of Cancer . 14Cancer Health Care 16The Dominance of the Medical Model in Cancer Health Care 16Emphasis on Biophysical Care . 17Demand for Rigorous Research 18Professional as Expert in Treatment Decisions 18New Age Movement . . 20Paradigm Shift 21Mind/Body Connection . 23Health and Weliness Promotion 24Personal Responsibility, Empowerment and Education 26Psychosocial Factors and Cancer Disease . 28Psychosocial Risk Factors as Antecedents to Disease 28Progress in Research in Psychosocial Care 29Coping theory 30Social support 31VPrograms of Psychosocial Care . 32Psychosocial Risk Factors and Biologic Outcomes 35Summary 36CHAPTER THREE: LITERATURE REVIEW . 38Literature on Self-Help Groups . 39Overview of the Literature on Self-Help Groups 40Terminology 41Definition of a Self-Help Group . 41Self-Help Group Characteristics . . 42Focal Problem 42Purpose . 43Source of Help . 43Knowledge Base . . . 44Basis of Power . 45Composition . 46Inputs 46Origin and Sanction 47Control 47Organization Design 48Other Characteristics 48Developmental Stages or Life Cycle 49Processes and Mechanisms 50Self-Help Group Ideology . 51Experiential Knowledge . 53Research Problems and Directions for the Future 55Summary of Literature on Self-Help Groups 56Literature on Adult Learning 57Overview of Literature on Adult Learning 58Experiential Knowledge . 60Experiential Learning 62Processes of Experiential Learning 63Situated Learning: Legitimate Peripheral Participation 66Background of “Situated Learning” . 66Legitimate Peripheral Participation . 67viLearning . . . . . 68Zone of Proximal Development . . . . . . 69Transformative Learning . . . . . . 70Emancipatory Education . . . . . . . 72Transformative Learning . . . . . . 73Model of Transformative Learning . . . . . 75Phase one: Generation of consciousness . . . . 78Phase two: Transformation of consciousness . . . 80Phase three: Integration of consciousness . . . 80CHAPTER FOUR: RESEARCH DESIGN AND METHODOLOGY . . 82Selection of the Research Method . . . . . . . 82Research Design . . . . . . . . . 83Identification of Site . . . . . . . . . 84Characteristics of Participants . . . . . . . 85Participant Selection . . . . . . . . . 87Methods of Data Collection . . . . . . . . 88Review of Documents and Media Materials. . . . . 88In-Depth Interview with the Remaining Founder . . . . 88In-Depth Interviews with Current Staff . . . . . 89In-Depth Interviews with Selected Learners . . . . 89Participant Observation. . . . . . . . 89Survey . . . . . . . . . . 90My Own Experience . . . . . . . . 91Ethical Considerations . . . . . . . 91Analysis and Interpretation of the Data . . . . . . 92CHAPTER FIVE: HOPE CANCER HEALTH CENTRE . . . 95HOPE Cancer Health Centre: Preview . . . . . . 95Origin . . . . . . . . . . 95Purposes . . . . . . . . . . 96Activities . . . . . . . . . . 97Funding and Maintenance . . . . . . . 98HOPE as a Self-Help Group. . . . . . . . 100viiFocal Problem . . 100Intensity of Feelings . 101Difficulty Expressing Feelings 103Sense of Loss of Control . 104Lack of Knowledge 104Limited Resources and Options 106Purpose 107Fighting Cancer and Staying Alive . 108Improved Quality of Life . 110Safe Comfortable Place . 111Source of Help . . 112Mutual Assistance . 113Leaders . . . 115Knowledge Base 118Knowledge of Cancer Care and Recovery 118Choose to Be Alive 120Know Yourself . . 121Help Yourself . 122Self-Help “Techniques” 124Positive attitude 125Expression of emotions 126Know and Use Resources 127Being Human . 128Assisting People with Cancer 129Value of Sharing 130Safe “Normalizing” Milieu 130Importance of Peer Relationship 131Base of Power. 133Composition 135Inputs . . 138Money . 138New Members 140Veterans 140Origin and Sanction 142vu’Control . . . . . . . . 145Leadership . . . . . . . . . 146Member Input . . . . . . . . 147Organizational Design . . . . . . . . 147Other Characteristics . . . . . . . . 150Developmental Stages or Life Cycle . . . . . 150Summary . . . . . . . . . 152CHAPTER SIX: ADULTS LEARNING WITH PEERS . . . 154Preview of the Four Themes . . . . . . . 157Three Perspectives of Adult Learning . . . . . . 160Perspective of Transformative Learning . . 160Perspective of Experiential Learning . . . . . . 161Perspective of Situated Learning . . . . 164Ideology as the Frame of Reference for Learning . . . . 165Four Forms of Learning. . . . . . . . 168Learning within Meaning Schemes . . . . . 169Expanding Meaning Schemes . . . . . 171Changing Meaning Schemes . . . . . . 173Perspective Transformation . . . . . . 174The Process of Perspective Transformation . . . . . 178Disorienting Dilemma . . . . . . . 179Peer Group as Reference Group . . . . . 180Experience as the Condition of Knowledge . . . . . 181Experience as Authority . . . . . . . 183Reflection on Experience . . . . . . . 184Propositional Knowledge . . . . . . . 186Practical Knowledge . . . . . . . . 187The Affective Dimension of Learning . . . . . 190Being with Peers . . . . . . . . . 194The Value of Being Peers . . . . . . . 196Sharing . . . . . . . . 196Listening . . . . . . . . 197Talking . . . . . . . . . 198Being Encouraged and Getting Support . . . . . 199ixAssociating . . . . . . . 201Practicing and Being Involved . . . . 202Newcomer to Veteran . . . . . 203Readiness . . . . . . . 208Accessibility . . . . . . . . . 210Extension of Life . . . . . . . 211Summary . . . . . . . . . . . 214CHAPTER SEVEN: SUMMARY, IMPLICATIONS, LIMITATIONSAND CONTRIBUTIONS . . . . . . . . 215Summary . . . . . . 216HOPE Cancer Health Centre . . . . . . . 217Characteristics . . . . . . . 218Differences . . . . . . . . . 219Changes Over Time . . . . . . . . 220Maintenance of HOPE . . . . . . . 220Members’ Experiences Learning as Participants of HOPE:Learning with Peers . . . . . . . . 221Context . . . . . . . . . 222Activities . . . . . . . . . 222Ideology . . . . . . . . . 223Processes . . . . . . . . . 224Outcomes . . . . . . . . . 225Implications of the Study . . . . . . . . 227Health Promotion . . . . . . . . 228Cancer Care . . . . . . . . . 228Self-Help Groups . . . . . . . . . 229Adult Education . . . . . . . . . 231Limitations of the Study . . . . . . . . 231Contributions of the Study . . . . . . . . 234REFERENCES. . . . . . . . . . 236APPENUIX A: Data Collection Tools and Ethics Release Forms. 248xLIST OF FIGURESFigure 1: The experiential learning model . 64Figure 2: Model of transformative learning . 77Figure 3: The reflection process in context 163xiACKNOWLEDGEMENTSI wish to acknowledge with sincere thanks and love the members of HOPECancer Health Centre. First, for being there for me when I needed to learn aboutcancer and cancer care, and second, for participating in this study by sharing withme their own learning experiences. I am especially thankful to Moyra White, thecurrent Director of HOPE and to Barbara Dams and Maggie Vance, the “veterans”who help Moyra provide warm and effective leadership. I am also grateful toClaude Dosdall, in memory, who inspired me with his energy and his commitment.I am very appreciative of the assistance of my research advisory committee:Dr. Tom Sork whose knowledge of the research task and consistent guidanceencouragement were a welcome combination; Dr. Dan Pratt, who helped untanglemore than one problem by using his knowledge of adult learning to stimulate myown thinking; and Dr. Nancy Waxier-Morrison whose knowledge and experience ofqualitative research and of cancer research was very helpful and reassuring. Iwould like to thank Dr. Judith Ottoson for her willingness to read the study andfor her meaningful comments.I am very thankful to all my family members for their endearing andcontinuous support, even while not understanding why the work was taking solong. I especially thank them for their proof reading efforts.I would like to acknowledge Heather Brown for her assistance transcribingthe interview tapes and Darcie Rae for her contribution of editing and printing thefinal publication.I express my appreciation to my long time friend and colleague, SusanLittle for her many votes of confidence. I would also like to thank my colleaguesat Youville Residence for their support and encouragement. 1 am especiallythankful to Sister Rita Kehoe who understands my efforts from the perspective ofher own personal experience.ICHAPTER ONEINTRODUCTIONStatement of the ProblemThe contribution of self-help or mutual aid groups to the well-being of theirmembers and society at large is well known. Recently, mutual aid received newrecognition as it was designated a major health promotion mechanism in a federalgovernment report on health, Achieving Health for All (Epp, 1986, p. 8). Eppstates that “through self-help, people come together to deal with the consequencesof being unwell, overburdened, bereaved, disabled or in a situation of crisis” (p. 7).The report defines health promotion as “the process of enabling people to gaincontrol over and improve their health” (World Health Organization, 1986). Mutualaid as it is practiced ir self-help groups clearly exemplifies health promotion.Most health promotion activities involve facets of adult education. Thework of Freire (1970), often called empowerment or emancipatory education, hasbeen popularized as a framework for enhancing community based healthpromotion programs. Specific examples are studies by Minkler and Cox (1980),rallerstein and Bernstein (1988) and Kilian (1988). However, interest in theapplication of adult learning models and theoretical concepts has not been readilyextended to the study of self-help groups.Social workers, health care practitioners and policy makers have been theprimary contributors to the large body of literature of the characteristics of self-help groups. Hammerman (1988) suggests that the mental health community has9focused on self-help groups as a “unique form of group therapy” (p. 26) and thateducators have ignored them because they are not within the traditionalboundaries of education.Since the mental health community has paid the majority of attention toself-help groups, models of psychology and sociology underpin the studies on theprocesses and mechanisms operating within the groups (e.g., Levy, 1976;Lieberman, 1979; Powell, 1987). Only recently have some adult educators focusedon learning in self-help or mutual aid groups. Blair (1987) describes processesidentified with three orientations of learning theory that could be utilized to fosterlearning in self-help groups. Hammerman (1988) drew parallels between self-helpand adult learning: self-directed learning specifically. Hough (1990) focused onmembers of Alcohol Anonymous to investigate critical self-reflective learning. Thepurpose of these studies was to improve professional practice in the area ofleadership and facilitation of these groups. The practical results of these studiesprovide reinforcement for further research on self-help groups as contexts for adultlearning.Some recent studies of self-help groups utilized frameworks fromorganizational theory and ecological theory to understand the development andmaintenance of self-help groups (Maton, 1989; Powell, 1990; Schubert & Borkman,1991). One outcome is the legitimate placement of self-help groups on acontinuum of health care services between community care givers (informal) andhuman service agencies (formal) (Powell, 1990). The basis for this is therecognition that although the processes occurring in self-help groups are similar tothose in professionally led therapeutic groups, members often experience outcomesof a different quality or magnitude. The outcomes are also known to vary fromthose achieved through one to one professional help (Powell, 1990).One focus of professionals interested in self-help groups is determiningthese differences. Borkman (1976) proposed that the knowledge base in self-helpgroups differs because it is experiential knowledge. Experiential knowledge isconceptualized as different from the folk knowledge of lay helpers and the expertknowledge of professionals by virtue of the members in self-help groups havingdirect experience with successful outcomes for the problem or concern.Another explanation for the different outcomes in self-help groups is the“group ideology” Antze, 1976). Antze defines ideology as “not only the group’sexplicit beliefs, but also its rituals, rules of behavior, slogans, and even favoriteturns of phrase” (1976, p. 324). He states that because self-help groups are setapart from formal agencies and professionals, they can utilize their independenceto develop and promote an ideology that is different and more supportive of itsmembers than that of the mainstream or dominant culture. There is a need todetermine from participants of self-help groups the nature of their experienceswith ideology and experiential learning, and the value of these elements tomembers and to the group. The understanding gained is enhanced by examiningstudies on the related segments of adult learning: experiential learning,transformative learning and situated learning.4Purposes of the StudyThe first purpose of this study iS to add to the existing literature on self-help groups a comprehensive description of a particular self-help group, includingits development, its purpose, and its means for achieving its purpose. Theaddition of an in-depth picture of a group that has not yet been studied adds tothe general knowledge of self-help groups. It also provides an understanding ofthe context for learning by members of a particular group.The second purpose of the study is to enhance the understanding of whathappens for the members during their participation in a particular self-help group.In order to achieve this purpose, selected participants were asked to relate theirexperiences of learning. The data was then viewed through lenses provided by theliterature on adult learning. To serve this purpose, selection of the concepts andpropositions from literature on adult learning was made on the basis ofsimilarities to processes and mechanisms described in the literature on self-helpgroups.As a student of adult education, I was professionally motivated to achievethese academic purposes. Because I am a member of HOPE Cancer HealthCentre, which is the group I chose to study, I was also personally motivated tomeet these purposes.As a member of HOPE, I have had first hand experience n the personalbenefits realized through partic1paton. At the time I joined this group, thepotential benefits were not altogether unknown to me as I had previouslyattended, as a health care professional, a workshop offered by the leaders of the5group and I became familiar with the approach of this organization. Also, thenotions of personal exploration, development of self-awareness and management ofstressors- -all important elements of a healthy lifestyle- -were already a part of mybelief system and quite important in my life. I was not, however, prepared fordealing with the potential and real threats to my well-being that accompanied myown diagnosis of breast cancer. Nor could I, at that time, have predicted thedirection or the destination of my own journey with learning as a result ofmembership in HOPE. I believe the same is true for other members. I value theopportunity HOPE gave me to learn with a peer group of cancer patients andbelieve that other members also value their learning experiences. I wanted tostudy learned in this context.It is partly to honor this group that I have provided a detailed and holisticpicture of HOPE Cancer Health Centre. It is important that more is known aboutthe learning that occurs in self-help groups such as HOPE and this study providesmeaningful material on that subject. I also wanted this study to convey the valueto cancer patients of both giving and receiving help from one another.Site of the StudyHOPE Cancer Health Centre is currently located at 2574 West Broadway,Vancouver, B.C. It was organized through the efforts of Claude Dosdall. In 1978Claude was told that he had an inoperable brain tumour and had a five percentchance of recovery. Instead of accepting the ‘odds,” Claude focused much of hisenergy on regaIning his health. Many of his earliest efforts at self-help techniques6were a result of attending a workshop given by Dr. Carl Simonton, an Americanoncologist, and his wife, Stephanie Matthews-Simonton, a psychotherapist.Together they had determined that their cancer patients who routinely performedvisualization and other positive health practices while receiving medicaltreatments extended their lives and achieved better quality of life (Simonton,Matthews-Simonton, and Creighton, 1978). Claude pursued many forms of“alternative” treatments as well as “medical” treatments during the course of hisdisease. His strong belief in the mind/body connection, the need for stressreduction and the value of personal exploration became the basis for hisleadership in the HOPE Cancer Health Centre. His own success at gainingquality of life and life extension gave credence to his beliefs.The self-help organization began in 1980 when Claude searched for andfound other cancer patients interested in “helping each other.” This was not aneasy task as he was not met with enthusiasm when he first broached the topic atthe Cancer Agency. He states: “The head of the B.C. Cancer Control Agencywould not support a group whose aim was to encourage people to takeresponsibility for their own illness and health, believing the patients would feelguilty if they died” (Dosdall and Broatch, 1986, p. 86). He was eventually helpedby a nurse at the Cancer Control Agency (now called the B.C. Cancer Agency) whohad taken the Simonton Therapist Training Program.The reasons given by Claude for wanting to be with other cancer patientswas a desire to have his situation understood, and to receive positiveencouragement in place of “the sympathy and patronization so commonly given to7cancer patients” (Dosdall, 1984, p. 12). His view was that positive talk andunderstanding could be the most powerful medicine and he had a strong desire toreplace the despair familiar to most cancer patients with hope. In the Simontongroup, he had been told of the value of support. He was also told of the value ofclarifying life purposes and had included in his personal list of goals the desire “towork with people in a group workshop setting” (Dosdall & Broatch, 1986, p. 25).Although the activities of HOPE have evolved over time, the services at theHOPE Cancer Health Centre fall into two categories: informal activities in theoffice and more formal education programs.As a “store front” operation, HOPE’s doors are open to cancer patients on adrop-in basis. All staff are cancer patients and interrupt their office work toanswer questions and talk with people that visit or contact them by telephone.There is a large library available for members to use to extend their knowledgeabout their kind of cancer and about treatments, both conventional andalternative. Staff are often able to connect new members with others having thesame condition or treatment.Weekend workshops are held on a monthly basis and attendance at one ofthese is the basis for beginning membership in HOPE. Interested persons areasked to bring their spouse or another support person if possible, as it is believedthat support is one of the critical elements in cancer care. A fee is charged forthis workshop, but advertisements state that financial support is available.Workshops cover the topics considered critical to “self-healing” for cancer patients8and provide opportunities for cancer patients and their support persons to explorenew ideas and to experience, in the process, the affective benefits of mutual aid.Research QuestionsIn order to understand about HOPE Cancer Health Centre as a self-helpgroup and as the context for learning experiences of the members of HOPE, a fulldescription is needed. Understanding of the phenomenon of adults learning in thecontext of a self-help group must first be appreciated through a collection of theexperiences of members in the situation. To achieve the purposes the followingquestions were used to focus the research:A. HOPE as a self-help organization:I. What are the characteristics of HOPE as a self-help group?2. How does it compare to other self-help groups?3. Have some characteristics changed over time and, if so, what havethe changes been and what has influenced the changes?4. How is the organization maintained?B. Members learning experiences as participants of HOPE:1. What are the characteristics of HOPE as a helping/learning context?2. What is its purpose and what is planned to achieve that purpose?3. What is actually happening in this context and where does it happen?4. What is the ideology of this group and how is it put forth?5. What experiences do members say are helpful?6. What do members say about the way they learn in this setting?97. How are the learning opportunities accessed?8. What do members say they learn in this setting?9. What, if any, are the significant changes that members believe are aresult of participation in this group?10. What is the nature of members’ growth or movement, if any, whichmembers attribute to HOPE?Research Design and MethodologyThe design and methodology or the research reflect a desire to capturethe process of learning in the context of a self-help group. Included in thedesign is the choice of the research tradition or perspective to be followed andthe phenomenon to investigate. Specifying the research methodology and theformat of data collection and analysis was also required.Research perspectives are linked to different ways of thinking andknowing and about the world. The major philosophical traditions havediffering assumptions. The naturalistic-phenomenological philosophy assumesthat meaning is subjective and is constructed personally and socially throughindividual and collective definitions, that there are multiple realities and thatphenomena are best understood from the perspective of the participants(McMilan & Schumacher, 1989). In the naturalistic view, the environment isnot static and readily observed. Experience is inextricably linked to theenvironment and meaning is contextual. Within this tradition the view of theobserver is intertwined with the phenomenon and acts of observation and10listening are interactive. The naturalistic view is different from the traditionalpositivistic paradigm which assumes that “what exists can be extrapolatedfrom its environment and, because it exists, it exists in some measure and,thus, can be quantified” (Owens, 1982, P. 4). Observations in this paradigmare considered to be objective. The naturalistic view, with its qualitativeapproach, is most suitable for study of a self-help group as a part of the healthcare system and as the learning context for its members.The qualitative approach is appropriate to a study seeking to understandholistically a phenomenon that has subjective, interrelated and situatedmeanings (Weiser, 1987). Careful study of one example of a phenomenon is thecase study method, which iS viewed as the design of traditional qualitativeresearch. Merriam states a case study offers a means “of investigating socialunits consisting of multiple variables of potential importance in understandingthe phenomenon” (1988a, p.32).The phenomenon under study is HOPE Cancer Health Centre, whosemembers have in common the disease of cancer. There are two perspectivestaken. One focuses on the characterstcs of the group and the other focuses onthe adult learning in the self-help group. For the second perspective the caseshifts to the individual members of HOPE. Both perspectives are contextualand are suited to use of methods which achieve an understanding from theparticipants’ perspective. Useful methods to collect qualitative data are thoseused by ethnographers: in-depth interviewing and participant observation. TheUphenomenon is not static and it is acknowledged that actions of the researchercreate changes ifl the phenomenon under study.The central method of data collection was in-depth interviews of selectedmembers of HOPE. Other methods of data collection were participantobservation at the HOPE office and two weekend workshops and review ofarticles, HOPE newsletters and the HOPE video.In order to provide a comprehensive description of HOPE, a frameworkof characteristics of self-help groups was developed through study of theliterature. Literature on adult learning was examined for concepts considereduseful for focusing and interpreting the data derived from interviews about themember& experiences of learning in the group. The concepts and propositionsselected were intended to help focus the data collection and assistinterpretation rather than predict outcomes. An interactive process of studyingthe data and the literature began during data collection and continued tocompletion of the study. A need for further exploration of literature wasanticipated but was not necessary.Organization of the ThesisThe thesis is organized in seven chapters. The first chapter provides anoverview of the research problem and an introduction to the research design.The second chapter iS devoted to an examination of the social context of carefor cancer patients. Chapter Three is compromised of a review of the literatureon self-help groups and adult learning that was relevant to the study. Themethodology for the study is discussed in Chapter Four. Chapter Fivedescribes HOPE and its characteristics as a self-help group. Chapter Sixdescribes and lnterprets the data on the learning experiences of HOPE’smembers in the context of the self-help group. A final chapter provides asummary and discusses mphcations of the research.1213CHAPTER TWOCANCER AND CANCER CAREThere are three large fields of study that provide background to this studyof the HOPE Cancer Health Centre: cancer health care, self-help groups, andadult learning. In order to provide a comprehensive and holistic view of thisorganization and what it means to the members, literature from each of theseareas will be reviewed.Literature related to cancer and cancer health care is the focus of thischapter. To understand the existence and purposes of HOPE as a self-help healthcentre for cancer patients, it is necessary to have an understanding of the contextof cancer health care. From the vast amount of literature on cancer and cancercare, some was selected in order to provide a perspective on the care for cancerpatients in cancer control agencies and in the community. This included a reviewof the major factors that influence, over time, the provision of this care. Thefactors can be grouped under three main headings: dominance of the medicalmodel in cancer treatment centres, the New Age movement and notable researchresults in the area of psychosocial care and cancer risk factors. As introduction tothis chapter, a brief description of the ‘aura” or socially constructed reality ofcancer is presented.14The Social Reality of CancerCancer describes a disease process of living cells growing and changing atan unnatural rate, losing their capacity for normal functioning (Cunningham,1985). The disease process is viewed as being out of control and therefore canceris known as a fatal disease. There is an aura that surrounds a diagnosis of cancerthat includes a dread of death and the worst scenarios regarding treatments(Spiegel, 1991). The tendency of physicians and researchers to focus on the acuteaspects rather than the chronic nature of the illness helps perpetuate this view ofcancer as the worst disease one can have (Silberfarb, 1982). In fact, the manycancer diseases vary greatly both in the rate and extent of their natural progressand in the variety and efficacy of available treatments. For some cancers thereare high rates of recovery and treatments that are not stressful, even though, thedominant public view or social reality is that cancer is a horrific disease to beequated with insufferable treatments and eventual death (M. Cohen, 1982).The common feelings of new cancer patients are: fear that cancer isinherently horrible and unnatural, pessimism about survival prospects and fearthat cancer, when terminal, is more painful and distressing than other diseases.There is also a fear of cancer as something shameful, a stigma, or even apunishment (Brewin, 1986, p. 91). The strength of these feelings is evident in thefact that persons with cancer disease are often referred to as “cancer victims.”The aura of cancer contributes not only to fear, anxiety and depressionamong cancer patients but also to feelings of isolation and uncertainty.Uncertainty is grounded in the lack of scientific knowledge of specific causes and a15lack of definite information about the efficacy of treatments (Pruyn, Van denBorne & Stringer, 1986). Some factors have been isolated as “causes” of cancerbut extensive research has failed to produce a simple cause and effect formula.For example, the correlation of cigarette smoking and lung cancer is significantenough to demonstrate a relationship but the fact that not everyone who smokescigarettes develops lung cancer signals the existence of other factors. Currently,cancer is classed as a multifactorial disease involving neurochemical, genetic,hormonal, immunological and emotional factors (Ray & Baum, 1985). This meansthat most cancer patients are faced with questions they do not know the answer toand to which there may not be accurate answers (Pruyn, Van den Borne &Stringer, 1986).There is also considerable fear and stress about cancer treatments.Research in cancer treatments is vigorously pursued and significant progress hasbeen made. Still, most cancers are treated with one or a combination of surgery,chemotherapy or radiation. Debilitating side effects from medications andradiation, and disfigurement from surgery are not uncommon experiences ofcancer patients. The prospect of treatment creates threats to body integrity andcomfort and combined with the uncertainty of outcomes, adds significantly to thepsychological distress of cancer patients (Teich & Telch, 1985).A feeling of isolation is instigated by the threats related to the diagnosisand is fed, especially in North America, by the dominant values of independenceand self-reliance. These values are endorsed by the media where individuals are16portrayed “Rambo-like” and expected to conquer insurmountable odds Montbriand& Laing, 1991).All these notions about cancer meld to form a socially constructed realitythat is shared to some degree by persons receiving a diagnosis of cancer disease(M. Cohen, 1982). This reality, to the degree it is accepted and reinforced, shapesthe further experiences for individuals with cancer.The actual experience of individuals is also influenced by the etiology ofparticular kinds of cancer and the variety and accessability of services that areprovided. Influences on the provision of care for cancer patients are considered inthe next sections.Cancer Health CareThere are certain factors that have significantly shaped the provision ofservices over time, and these factors will be reviewed. They can be grouped as:dominance of the medical model in cancer treatment centres, progress andprominence of research on stress and other psychosocial factors and illness, andpopularization of the mind/body connection by the new age movement. It must benoted that the picture of service provision is different now than it was in 1980,when HOPE was founded.The Dominance of the Medical Model in Cancer Health CareAs the majority of care for cancer patients is provided within health careinstitutions, under the direction of specialized physicians and surgeons, the17influence of the methodology of medicine has been a dominant influence.Schwartz (1982) suggests that medicine is developmental and defines fourstages based on work by Pepper (1947, cited by Schwartz, 1982). The stages hespecifies are: the categorical labelling stage, the mechanistic stage where specificcausal mechanisms are sought, the contextual stage where attempts to understandcomplex interactions are dominant and the organistic stage where recognition isgiven to multidimensional causality and reciprocal influences. Movement throughthese phases is not a tidy linear progression and while there are definite signs ofevolution to the contextual and organistic phases, in hospitals and cancer controlagencies the mechanistic stage is still dominant. The features of the mechanisticphase, also called the medical or biophysical model, are: emphasis on thebiophysical body as the focus for diagnosis and treatment of disease, a positivisticapproach to research into disease causation and the efficacy of treatments andauthority of the “expert” professional in decision making related to care.Emphasis on Biophysical CareThe main purpose of medicine is to cure the body of disease. Based on areductionist perspective which separates body, mind and spirit into distinctentities, the medical model focuses on the biophysical body for both diagnostic andtreatment regimes. While the benefits of care and the advances in medicaltreatment for cancer patients must be highly acclaimed, emphasis on treatmentshas resulted in a tendency to ignore social and psychological factors in theprovision of care Montbriand & Laing, 1991).18Demand for Rigorous ResearchThe medical model is grounded in a positivistic approach which supports amodel of research based on proving results through experimentation. Researchcarried out in the various cancer treatment departments (radiology, chemotherapy,surgery) is grounded in scientific methodology and there is an expectation that allresearch will conform to experimental models and demonstrate evidence ofbenefits (Green, 1984). Schmale claims his biological and medical science peersneed “convincing evidence of predictive relationships achieved by means of simple,brief quick and clear-cut procedures or instruments” (1982, p. 192). The provisionof educational and psychosocial services for cancer patients has lagged becauseresearch in these areas has only begun to provide hard data and because thesedepartments compete with the other sectors of cancer treatment for limitedfunding (Green, 1984). As well, there has been a lack of acceptance of “unproven”treatments such as acupuncture, herbal and vitamin therapy and meditation thatare health enhancing for some (Thoreson, 1984).Professional as Expert in Treatment DecisionsIn the medical model, the physician is the technically competent expert andas such is the principle decision maker for the treatment of the patient. Thisestablishes a “magic bullet” approach to care which places all the responsibility forhealing with the professional. Patients are often unwittingly unaware of waysthey can be involved in the enhancement of their health (Dosdall, 1984). Provisionof information about proposed treatments has become standardized to enable19patients to provide an informed consent to treatments but information about alltreatment options is not always presented. As well, in many cases the patient isnot engaged in exploration of the options. Instead of participating in the decisionmaking process, patients commonly assume “sick role” behavior withaccompanying unquestioning compliance (Roberts & Krouse, 1990). Currentdefinitions of health and wellness emphasize the importance of an enablingprocess to foster personal responsibility and feelings of control in health caretransactions (Epp, 1986). Some physicians and other interdisciplinary teammembers, such as nurses and social workers, are able to promote these principlesbut it is known to be difficult within the authoritarian models of care (Thoreson,1984).Within this frame of care provision, assessment of treatment options isbased on criteria of legitimacy established by the medical authority. Therefore,information about alternative treatments is censured and patients wanting topursue them are often discouraged. The labelling of treatments outside thedomain of medicine as “unorthodox” or “unproven” (Thoreson, 1984) is evidence ofthis. Obviously, only the legitimate treatments are available in the cancer controlagencies, although some other treatments are offered by physicians in thecommunity. Cancer patients do avail themselves of complementary treatments inholistic health centres and vitamin and herb outlets locally and sometimespatients travel to clinics in other countries that offer specialized treatments.20New Age MovementSocial transformation has created a miieux for change in the care of cancerpatients. This social transformation has been called the new age movement(Zuromski, 1988) and it has been widely written about. Popular books referring tothe topic are: The Third Wave (Toffler, 1980), The Aguarian Conspiracy: Personaland Social Transformation in the 1980s (Ferguson, 1980) and The Turning Point(Capra, 1982). The underlying theme of the writers is one of social and personaltransformation. Specific aspects of the transformation range across a largespectrum of issues and include health care. There are underlying themes of unity,individual liberation and empowerment. Social transformation is caused in partby the movement of society from an industrial base to an information base. Onthe personal level the shift is described as a “revolution of consciousness”(Zuromski, 1988). The new age movement promotes a new vision of reality.Capra stated:This new vision includes the emerging systems view of life, mind,consciousness, and evolution; the corresponding holistic approaches tohealth and healing; the integration of Western and Eastern approaches topsychology and psychotherapy; a new conceptual framework for economicsand technology and an ecological and feminist perspective which is spiritualin its ultimate nature and will lead to profound changes in our social andpolitical structures (1982, p. 16).This movement, which can be called a paradigm shift because the underlyingbelief system is changing, has had certain influences on health care.21Paradigm ShiftThe rational-empirical view of the world has been the dominant model forthe last century. From this perspective, the dimensions of human experience arereduced into mind, body and spirit and treated as separate and distinct entities.In the rational-empirical world, reality is understood objectively and is measuredand evaluated quantitatively. In contrast, the new age view as discussed in theAquarian Conspiracy (Ferguson, 1980) is one of holism. Humans are viewed asunified beings with dynamically related emotional, social, cognitive and spiritualdimensions. It is interesting to note that these beliefs are not new; writings at thetime of Hippocrates give evidence of this view.When humans are viewed as unified systems, emphasis is placed on theneed for homeostatic balance in the body. Further, it is believed that whenhomeostasis is achieved there are related “good feelings” (Bennett, 1987).Within this frame of transformation, another important influence on healthhas been progression in the field of psychology. There has been a transitionthrough the schools of psychoanalysis, behaviorism and humanism totranspersonal psychology. Transpersonal psychology includes aspects of the otherthree fields. It is based on the view that the individual is a “unified, integratedself, capable of transcending the narrow confines of culture” (Boucouvalis, 1983,p.6). The notion of “unity” is extended to the parts of the universe which are seenas inter-related and unified.These shifts in humans’ perspectives of self, of society and of the universehave influenced both health and illness care. Newman identified the following99important changes related to underlying beliefs about illness and health:The shift is from treatment of symptoms to a search for patterns, fromviewing pain and disease as wholly negative to a view that pain and diseaseare information; from seeing the body as a machine in good or bad repair toseeing the body as a dynamic field of energy within other fields; from seeingdisease as an entity to seeing it as a process (1986, p. 17).The new age movement has influenced health care for individuals in severalways, One way is by providing a new set of assumptions about human functioningand about health. Interest in heahng with the mind is supported by the belief inthe unified view of humans. A second way results from new trends in health andwellness promotion. A related influence is a new emphasis on personalresponsibility and empowerment.Care for cancer patients is commonly centred in large hospitals orspecialized agencies for cancer treatment. These institutions exist within a largercontext of the health care system and also the larger culture of society.Institutions vary in the degree to which changes are made in response to outsideinfluences.Individuals have, however, been influenced by personal awareness of thenew age paradigm shift. This awareness has been facilitated by publication of anenormous number of books related to healing and self-help. Some cancer patientsmight have been attracted to the new views on health and on healing prior to theimplementation of innovations in the health care agencies.Mind/Body ConnectionInterest in the mind/body connection was popularized with the publicationof books such as: Mind as Healer, Mind as Slayer (Pelletier, 1977), Healing withMind Power (Shames & Sterin, 1978) and Feeling Good (Miller, 1978). One of themost popular books has been Anatomy of an Illness as Perceived by the Patient byNorman Cousins (1980). This book told of the author’s experience of usinglaughter to promote healing. He watched reruns of humorous movies during aperiod of serious illness and reversed the debilitating effects of a collagen diseasecalled ankylosing spondylitis. Two books that focused specifically on cancerdisease were printed around the same time: You can Fight for Your Life (LeShan,1977) and Getting Well Again (Simonton, Matthews.Simonton & Creighton, 1978).All these books demonstrated techniques for healing that were based on thebelief in unity of the mind, body and spirit; examples include: meditation,visualization, biofeedback, self-hypnosis and self-imagery. These techniques areoften called self-help techniques because they can be practiced on oneself. Dreamanalysis, journal keeping and varieties of psychotherapy were often recommendedbecause of awareness of the power of the unconscious on behaviours and thereforeon health.One other way the new age movement may directly influence health care forindividual cancer patients is the increased popularity of specific non-traditionaltreatments viewed to both enhance health and promote healing. They arevariously called “alternative,” “holistic” and “complementary medicine” (Bennett,1987). Acupuncture, reflexology, massage therapy, naturopathic medicine and9,Chinese herbal therapy are some examples. The view of humans as holisticsupports the notion that healthy interventions in one dimension can and willpromote healing in the other dimensions. Individual practitioners of thesetechniques are often called holistic health practitioners although licensing has notbeen well established.Yoga teachings and acupuncture are old traditions in the eastern world anddemonstrate that the holistic view has been dominant there for a long time.However, the reductionist view is still dominant within the institutions of healthcare delivery. Therefore, alternative therapies that are not consistent with thereductionist view become labelled as unorthodox, inappropriate, unproven andquestionable (Thoreson, 1984). This creates tension for patients wanting to usethese therapies as adjuncts to medical treatments, or use them instead of thesometimes invasive interventions of traditional medicine.Health and Weliness PromotionPolicy making in health care has also been influenced by the new paradigm.In Canada, the Lalonde report: A New Perspective on the Health of Canadians(Lalonde, 1974) was published by the federal government in 1974. This reportheralded a new era of thinking that placed responsibility for health on individuals.This emphasis on individual responsibility for health has since been criticized asbeing incomplete; newer health promotion models include social andenvironmental factors as equally important influences on health. The newermodel is well developed in the more recent report: Achieving Health for All (Epp,1986).At the same time, the definition of health evolved from a narrow view ofhealth as the absence of disease to a more inclusive and meaningful definition.Health is defined as “the extent to which an individual or group is able, on the onehand to realize aspirations or needs and on the other hand, to change or cope withthe environment” (WHO, 1984, P. 3).Attention to health risk factors created a wave of interest in individualspotential for enhanced health through improved lifestyle. A number of books havepopularized this trend. High Level Weilness (Ardell, 1977) and The WeilnessWorkbook (Ryan & Travis, 1981) are two commonly referred to and still popularpublications. They provide questionnaires for assessing lifestyle and practicalinformation on ways to enhance health, such as stress management, exerciseprograms, communication and relationship skills and spiritual growth.In these books, health and weliness promotion was focused on efforts toreduce the impact of known risk factors such as smoking, obesity, lack of exercise,over-consumption of alcohol and reckless driving. Furthermore, claims were madethat replacing “bad” lifestyle habits with good ones would not only reduce theincidence of disease but would also move people toward achieving a high level ofpersonal weilness (Ardell, 1977).Because of interest in personal weliness, programs in the areas of nutrition,exercise and stress management are now being implemented in health carefacilities. Guidelines are updated as more research is done. For example, there26are now diet guidelines for prevention of heart disease and cancer disease.Advances in technology have resulted in blood tests that measure immune systemcompetency. Specialized research that determines the impact of several differentfactors like nutrition, cognitive changes and social support on the immune systemhave been undertaken (Levy, 1990).There has been more attention paid to social and environmental risk factorsin health. For example, both institutions and communities have implemented bylaws prohibiting the smoking of tobacco in public areas. Policy makers haveextended their concern beyond protecting individuals against disease towardmaintaining a healthy environment (Epp, 1986). In all these efforts there is atheme of increased personal responsibility and empowerment.Personal Responsibility, Empowerment and EducationAttention to healthy lifestyle changes has prompted a belief that people canand should assume responsibility for their health. The view is that “people can,indeed ought to, take control of and responsibility for their own health” (Bennett,1987, p. 144). This belief has extended to individual and group concern forcommunity health and global health. This belief is problematic because authorityand responsibility has traditionally been held by power groups such asgovernments, elite members of society and some professional groups.The issue of empowerment is not excluded from discussions related tohealth and is partially endorsed by the Epp Report (Epp, 1986). The threemechanisms intrinsic to health promotion were identified as self-care, mutual aid27and a healthy environment. Fostering public participation is named as a strategyalong with strengthening community health services and coordinating publicpolicy (Epp, 1986).In order to help mobilize community groups to identify their specific healthproblems and generate action plans, a model of emancipatory education (Freire,1970) has been used m some areas Minkler & Cox, 1980). Models thatencourage communIty organizatIon, public partcipaton and social action areviewed as most effective. Health related problems such as poor housing at thecommunity level or lack of jobs and unstable economies in certain regions areviewed as socially, culturally, economically and politically founded. Models ofernancipatory education and community development support beliefs thatindvduals should be advocates and equal partners in health care and they fostera consumer approach to health care (Wallerstein, 1990). This consumer approachputs more onus on individuals to be informed about their health care needs. Italso impacts health care providers when they have patients who desire to beparticipants in care planning and some that are no longer willing to be passiverecipients of care in an authoritarian and paternalistic health care system.While community and group empowerment has been a consideration inliterature for some time (Freire, 1970), individual or personal empowerment hasnot received the same attention. Self-control in planning personal health care isportrayed as desirable and worthy in the media. Encouragement of this behaviouris based more on a cultural tradition of independence and self-reliance. Study ofrelationships between perceived control and locus of control and personal healthoutcomes iS a current area of Interest (e.g., Montbriand & Laing, 1991). The focustends to be on control as a factor that influences a person’s capabilities forchanging health behaviors. Sense of personal power as a direct and positiveinfluence on health outcomes requires more study. Researchers interested inpsychosocial risk factors and cancer disease have provided some ground work forstudy of this nature since their research focuses on the mediating pathwaysbetween behaviour and disease (Levy, 1990).Psychosocial Factors and Cancer DiseaWriters have for some time claimed that there are common psychologicalantecedents to the development of cancer disease (e.g., LeShan & Worthington,1956; Greene, 1954). Studies on the influence of similar factors on the progressionof disease has raised the credibility of these works (Borysenko, 1982; Cunningham,1985; Levy, 1990; Ray & Baum, 1985). Psychosocial factors most frequently listedin the studies are: experience of a lOSS, separation, frustration of life goals,inadequate expression of negative emotion, a tendency to depression anddependency and inadequate social support.Psychosocial Risk Factors as Antecedents of CancerStudies on psychosocial antecedents have been retrospective in design.They suffer methodological criticisms because there is no way of correlating othervariables such as age, or class or to take into account relationships of thepsychosocial factors with other possible influences such as environmental factors29(Ray & Baum, 1985). However, the retrospective studies do have value becausethe characteristics of cancer patients described can be tested prospectively and inanimal model systems (Borysenko, 1982).For cancer patients the notion of a “cancer personality” could eitherencourage self-blaming and victimization or be used as a stimulus for self-awareness and personal growth activities which can be viewed as healthenhancement (Cunningham, 1985). This information is not usually endorsed atcancer control agencies for fear of the former (Cunningham et al, 1991). It isthough, available in the popular press. For example, You Can Fight For Your Life(LeShan, 1977), tjnWellA am (Simonton, Matthews-Simonton & Creighton,1978), Imagery in Healing Acterberg, 1985) and Mind as Healer, Mind as Slayer(Pelletier, 1977) are all books that contain, in varying degrees, the notion thatcancer is related to stress and to a passive or lack of expression of negativeemotions. They also present strategies or tools that can be used to bring forthone’s own healing powers.Progress in Research in Psychosocial CareCancer patients have been the subjects in a large amount of the generalresearch on psychosocial interventions because cancer is a disease of highincidence and there is a high prevalence of psychosocial morbidity associated withit. Selye’s work, Stress of Life, was published in 1956 and it demonstratedrelationships between stress and biologic outcome. Still, provision of psychosocialcare for cancer patients has been largely motivated by a search for improved30outcomes in the area of psychological and social functioning. Programs have notbeen viewed as adjuncts to treatment of the disease.The majority of work in this field has been based on models ofpsychopathalogical stress theories, such as social network theory, biophysicaltheory of social support, and the theory of Person-Environment Fit (Bloom, 1982a).A complete review of the complex work in this area is beyond the scope of thisstudy but brief consideration will be given to coping theory and to the concept ofsocial support.Coping theoryBecause of the severe stresses related to cancer disease and its treatments,the dynamics of coping have been a major focus in research. Coping has beendefined as “efforts, both action-oriented and intrapsychic, to manage (that is,master, tolerate, reduce, minimize) environmental and internal demands, andconflicts among them, which tax or exceed a person’s resources” (Cohen &Lazarus, 1979, p. 219: cited in F. Cohen, 1984). Characteristics that influence anindividual’s ability to cope are listed as: cognitive appraisal of the stressor, pastexperience, coping style, internal or external locus of control, self-concept and selfefficacy, emotional control and supports (Rogers, 1989; Schmale, 1982). Defined asmodes of coping are: information seeking, direct action, inhibition of action,intrapsychic processes and turning to others for support (F. Cohen, 1984).Schmale (1982) suggests that coping is both context and person specific. Only31after a large amount of naturalistic research is done will commonalities berevealed to the extent that evaluations can be made regarding best approaches.Social supportThe relationship of social support to stress and illness has recieved centralattention in study of this complex area because there is empirical evidence for apositive relationship between social support and health (Bloom, 1982a; Wasserman& Danforth, 1988). Describing the construct of social support asmultidimensional, and ambiguious, Bloom found the definitions she reviewed tomost commonly include: (a) maintenance of social identity, (b) emotional support,(c) material aid and services, (d) information and (e) social affiliation (1982a, p.136). These elements relate to the broad classes of social support defined byHouse (1981). The types he discerned are emotional support (caring, concernesteem); informational support (advice, information, suggestion); appraisal support(affirmation, feedback) and instrumental support (practical help, money) (cited byRogers, 1987, p. 6). A simple though global definition of support that isacceptable for this study is provided by Weiss (1976). Support is “communication,sometimes nonverbal, by the helper, that the helper’s training, experience, andunderstanding are at the service of the distressed individual as the later strugglesto regain equilibrium” (p. 215).Bloom concludes that “social support is the strongest predictor of copingresponse and has indirect effects on all three measures of adjustment: self-concept,sense of power and psychological distress” (1982a, p. 1336). Social support is32thought to mediate psychological distress, facilitate coping and adaptation anddecrease vulnerability to disease (Goldberg & Cullen, 1985; House, 1981; Weinert& Brandt, 1987).Programs of Psychosocial CareSome psychosocial or human services have always existed in treatmentcancer centres to help ameliorate the distress and morbidity from the stressesassociated with the disease of cancer and its treatments. From this base, therehas been a continual expansion in the amount and variety of programs ofpsychosocial care within agencies and in the community.The literature on psychosocial interventions indicates a wide variety ofprogram designs. Researchers have reported on interventions for individuals(Gordon, Freidenbergs, Diller et al, 1980; Weiss, 1976) and for groups of patients(Blake, 1985; Bloom, 1982b; Levy and Wise, 1987; Teich & Telch, 1985). Someprograms include members of patients families (Berger, 1984). Groups programspromote dynamics that are not as available in individual encounters. They arealso considered to be more cost effective.Several approaches are used to help improve the psychosocial health ofcancer patients. Patient education can include information about the disease,about the treatments and about how to live with the disease. The programs mayinclude specific skills such as colostomy care, diet management or routine breastself examination. Sometimes interventions are directed for specific problemsexperienced by cancer patients; such as pain, nausea, vomiting, disfigurement and33emotional distress (Holland, 1984). More frequently programs are designed tohelp patients “cope with” any number of the problems they may be experiencing.Counselling and referral to other health care agencies are two other interventions.For groups of cancer patients, the two most frequently used approaches areprovision of support and teaching of cognitive behavioral skills. Cognitivestrategies such as logical analysis, reframing, problem solving and effectiveregulation are examples of specific techniques demonstrated (Wasserman &Danfort, 1988). Cognitive appraisal or comparison with others is emphasized as aprocess in support groups. Studies comparing the efficacy of these two approacheshave been done by Telch and Telch (1985) and Levy and Wise (1987). Both thesestudies found the effects of the skill training to last longer than the effects of thesupport group.The use of relaxation and mental imagery has only recently been includedin programs offered at cancer control agencies (Blake, 1985; Bereson, 1988;Berger, 1984; Cunningham et al, 1991). Often referred to as the “Simontonmethod” (Simonton, Matthews-Simonton & Creighton, 1978), these techniques areconsidered controversial because they have been publicized as an effective adjunctto medical treatment and critics say there is a lack of material evidence ofimproved outcomes. Also, questions have been posed about the ethics of raisinghope about “psychological cures” when the techniques appear to be based on theuse of positive thinking skills (Holland, 1984). Leaders of groups where thesetechniques are used suggest that there are direct benefits for the patients wellbeing and that they also provide patients with a sense of control (Bereson, 1988;34Cunningham, et al, 1991). Cunningham and his colleagues recommendterminology like “engaging” or “connecting” with one’s disease and believehelplessness and hopelessness can be avoided when people have an option ofacting on their own behalf (1991, p. 49).All of the above studies involved professional leadership, however, thebenefits of peer support are well acknowledged. Bloom states that “because peergroup members are in the same predicament, they can exchange information,obtain reassurance and reduce feelings of isolation and loneliness” (1982a, p. 140).Patients involved in counselling others by using expertise gained from theexperience of their illness are termed “veterans” (Holland, 1984).In this large number of studies, the research inadequacies are identified asthe absence of control groups, evaluation bias and treatment related issues.Comparison of results of different studies is difficult and is attributed tovariability in the evaluation of outcomes and lack of consistent use ofmeasurement tools (Telch & Teich, 1985; Watson, 1983). Use of broad conceptssuch as well-being, individual coping, and social support compound the difficulty ofachieving specific conclusions.Directions for future research specify the need for methods of defining theindividuals at risk, determining the effectiveness of various methods anddesigning more specialized programs for meeting the needs of those groups andfinding alternative sources of social support (Bloom, 1982a). Watson (1983)concludes that blanket services are not appropriate and must be moreindividualized to be cost effective. To this end, application of the concept of triage35has been proposed as a useful way to design pathways to various supportprograms for cancer patients (Green, 1984).Pychosocial Risk Factors and Biologic OutcomesMost research in the area of psychosocial risk factors has been focused onoutcomes in social and emotional health. More recently, biologic or physicaloutcomes have become a focus in this type of research. Progress in this area ofresearch had been slow, partly due to the complexity of the hypothesizedprocesses, partly due to the lack of measurement tools in the outcome areas andpartly due to limited resources for research in this so called “soft” area (Green,1984). More recognition for professionals interested in the behavioral aspects ofcancer was achieved following the 1975 meeting of the National Cancer Institute.This nation wide organization in the United States chose the behavioral aspects ofcarcer as its central focus that year Borysenko, 1982).Of significance, in this area of research, is the recent demonstration ofrelationships between psychosocial factors and cell mediated immunity and theneuroendocrrne system. Advances in the measurement of the factors and the highlevel of scientific sophistication in these areas has assisted researchers to identifyintricate interactions although, as yet, the mediating mechanisms are onlytentatively defined (Borysenko, 1982; Levy & Wise, 1987; Levy, 1990; Ray &Baum, 1985). The risk factors determined to be influential are the following:perceived inadequate social support, cognitively generated helplessness andrepressed expression of negative emotions (Borysenko, 1982; Levy, 1990). The36interrelations of the factors are complex, although prospective models have beenproposed (e.g., Levy, 1990, Greer & Watson, 1985).Another breakthrough in this area is the recent publication of the findingsof a follow up study of an controlled experiment with women attending aprofessionally led support group. This longitudinal study determined that womenin the treatment group lived twice as long as those in the control group (Spiegel,1991).Knowledge that specifically planned psychosocial interventions caninfluence the progression of disease has provided impetus for both the design ofspecialized programs and more specific research goals (Levy & Wise, 1987; Moms,1986; Teich & Telch, 1985). As a result, programs of psychosocial intervention incentres of cancer treatment are becoming more prominent and are broader inscope.SummaryIn North America, care for cancer patients has been directed by the scienceof medicine, with emphasis on physical manifestations and treatments aimed atcontrolling physical disease. There are other factors that influence the needs andwants of cancer patients for health care. The high mortality rate, the uncertaintyof treatment outcomes and the morbidity of treatments associated with cancerdisease increase the need for psychosocial care. Also impacting the cancer patientis knowledge of relationships between stress and illness and popularization by theNew Age movement, of approaches to self-healing. Reports by medical37practitioners (Simonton, Matthew-Simonton, & Creighton, 1978; Siegel, 1986) ofpositive effects from use of some mind/body techniques have increased awarenessand interest in this area. Level of satisfaction with formal services and awarenessof their own needs and wants in relation to care and treatment can influence acancer patient to seek resources outside of a cancer treatment centre, such as aself-help group.38CHAPTER THREELITERATURE REVIEWIn order to fully understand HOPE as a self-help organization, a broadoverview of literature on self-help groups is provided. It is important that thedescriptive portion of the study of HOPE be such that it can be contrasted andcompared to other self-help organizations. Recent literature on self-help groupshas utilized organizational theory to create models that allow comparisons bothamong self-help groups, and between self-help groups and other care givingsystems (Powell, 1990; Schubert & Borkman, 1991; Suler, 1984). Literature onself-help groups was reviewed with the purpose of developing a framework for acomprehensive description of HOPE as a self-help group. The literature on self-help groups constitutes the first section of this chapter.Self-help groups have been referred to as alternative social environments(Maton, 1989) and as learning communities (Borkman, 1976). The internalworkings of these organizations have largely been explained utilizing social andpsychology theories (Levy, 1976; Lieberman, 1979). Important propositions madein the literature on self-help are mirrored in some literature on adult learning. Itwas this connection between self-help and adult learning that gave use to thisstudy. The focus of the research became the study of the experiences of HOPEmembers as adult learners in the context of a self-help group. This focus triggereda search for literature on adult learning with potential power to interpret thechanges experienced by self-help group members. Selection of the literature on39adult learning was directed by elements found to be common to both sets ofliterature. Review of this literature forms the second section of this chapter.Literature on Self-Help GroupsThere are three purposes for reviewing the literature on self-help groups.The first is to gain an understanding of self-help groups as individual entities andas a part of a larger helping system. This provides background to the study and aframework for identifying characteristics to be used to focus the description ofHOPE as a self-help group. Second, the literature on the inner workings of self-help groups provides direction to the related literature on adult learning. Third,study of this literature provides information on the approaches used in previousstudies.The literature review is organized in the following manner. A brief historyand overview of the literature on self-help groups is presented first. A discussionof terminology and a definition of self-help group is followed by a section oncharacteristics of self-help groups such as purpose, origin and sanction, source ofhelp, knowledge base, basis of power, composition and control. A focus on theinternal processes and mechanisms of self-help groups includes special attentionto the concepts of experiential knowledge and group ideology. These concepts arehighlighted because they provide a bridge to the literature on adult learning andultimately to understanding learning in the self-help group context.The literature review on self-help groups is completed with a brief overviewof the difficulties identified in previous research studies. Literature focused on the40social planning and policy issues of self-help groups is not included in the review.Overview of the Literature on Self-Help GroupsThe emergence of self-help groups became recognized as a socialphenomenon of significant proportion in the early seventies. The amount ofservice and help provided by these groups to their members is vast. In fact, self-help groups mushroomed so fast, they not only attracted but demanded attentionfrom professional human service providers (Katz, 1970). The interest isexemplified in a “special issue” of The Journal of Apphed Behavioral Sciences(September, 1976). The introduction affirms “a commitment to understandingprocesses of individual and social interaction and change, and a belief that peoplebanding together in small and large social systems can provide one another withneeded resources for individual and social development” (Lieberman & Borman,1976, p. 261). Further documentation of the research on self-help groups appearedin a special issue of Social Policy (1976), and in three major books (Caplan andKillilea, 1976; Katz & Bender, 1976; Gartner & Riessman, 1979). The majorcontributors to the field at that time are those whose articles appear in theseseries, for example: Antze, Borkman, Katz and Bender, Levy, Durman, Silverman,Gartner and Riessman. Their writings were complimented with a comprehensiveliterature review by Killilea (1976).The early nineties has brought a renewal of interest in self-help groups witha “special issue” of the American Journal of Community Psycholo (October,1991) and three new texts (Katz & Bender, 1990; Powell, 1990; Romeder, 1990).41TerminologyGroups of individuals coming together to provide support and to help eachother with a common problem are classed as se]f-help groups. They are focused onthe sharing of practical experience based knowledge (mutual aid) and developprocesses based on the values on mutuality and reciprocity (Silverman, 1980).Viewed as peers, the only commonality between the members may be the problemor concern that they share.While “self-help group” is the more widely used term, the terms “mutual aidgroups” and “mutual help groups” are used interchangeably in the literature andpreferred by some researchers (Silverman, 1978; Maton, 1989). Borkman (1991)argues that although mutual aid is a major factor, emphasis on the value ofpersonal responsibility in the form of action or “self-help” is sufficiently dominantto sustain use of the label self-help group. Another dominant characteristic is thatself-help groups are member owned. Therefore, similar groups led byprofessionals or human service agencies are referred to as “support groups” byresearchers (Borkman, 1991). Authors do speak of self-help groups and self-helporganizations synonymously (Borkman, 1991) and for the purpose of this study nodistinction will be made.Definition of a Self-Help GroupA formal definition developed by the U.S. Department of Health and HumanServices (1987) is now used by many professionals. Self-help groups are:42Self-governing groups whose members share a common ... concern and giveeach other emotional support and material aid, charge either no fee or onlya small fee for membership, and place high value on experiential knowledgein the belief that it provides special understanding of a situation. Inaddition to providing mutual support for their members, such groups mayalso be involved in information, education, material aid, and social advocacyin their communities (p. 5).This definition is comprehensive, however, for the purpose of this study a simplerdefinition which captures the essence is selected. A self-help group is a humanservice-oriented voluntary association made up of persons who band together toresolve the problem through their mutual efforts (Borkman, 1976, p. 445).Self-Help Group CharacteristicsDefinitions do not include all the elements considered to be characteristic ofself-help groups nor do they provide a complete basis for comparing these groupsto other care giving systems. The following characteristics provide a frameworkfor defining the unique qualities of a particular self-help group. They can alsoserve to differentiate self-help groups within the three caregiving systems of selfhelp, professional and community (Powell, 1990).Focal ProblemThere are only a few problems of significance for which self-helporganizations do not exist. Indeed, the spectrum of human concerns isencompassed Two qualities that may be considered in defining the focal problemof a group are the degree of social network disruption and degree of related lifestress Jaton, 1989). Either or both of these factors are evident in problems43addressed by self-help groups. Maton (1989) has studied the relation between thefocal problem and the method of problem solving used by groups and claims thereis a fit between the “helping ecology” and the focal problem.PurposeThe overall purpose of self-help groups is to help and support its members.A typology of self-help groups based on purpose has been designed by Levy (1976).He defined four different purposes: behavioral control or conduct reorganization,stress coping and support, survival orientation and personal growth or selfactualization. Katz and Bender (1976) proposed five classes of groups based onthe following purposes: self-actualization, social advocacy, alterations in lifestyle,refuge for outcasts and unclassified.Source of HelpThe most pivotal characteristic of all self-help groups is that as a source ofhelp the members themselves are utilized; sharing effort, knowledge, skills andsupport (Levy, 1976). This kind of help is known as peer support or mutual aidand the role of participant and that of provider are blended. In self-help groups,both roles have a flavour of mutuality and self-direction (Silverman, 1980). Thephenomenon of participants benefitting from helping others is referred to as“helper therapy” and is regarded as a strong basis for both the appeal and successof self-help groups (Riessman, 1965).44Within the professional care system, the role of the provider is explicit andis usually a remunerated position. This means the participant pays and is usuallyin a receptive position. In the community care giving system, the roles areinformal and mutual (Powell, 1990). Professionals are at times involved with se]fhelp groups but they usually have a consulting or temporary role. Focus ofconcern is a term used to describe the reciprocity of helping in the self-help groupsand distinguishes it from a focus on self only in the other two care giving systems(Powell, 1990).Knowledge BaseThere appear to be two bases for receiving help from peers. One is theimmediate understanding that comes from being “in the same boat.” Anxiety isrelieved when members discover the commonalities of their experiences with theproblem of concern. The other form of help is knowledge built upon theexperiences of dealing with the problem or issue of concern. This knowledge hasbeen labelled “experiential” because it has been developed through the experienceof members. It identifies some of the members as “veterans” (Borkman, 1976,Silverman, 1980) or “mentors” (Powell, 1990), those who can demonstrate what ispossible. Powell (1990) uses the experiential basis of the knowledge of self-helpgroups to distinguish them from the other care giving systems which have“professional” and “social” knowledge.The set of teachings of a self-help group has also been called the group’sideology as it is distinctive of the group and is based on the accumulated wisdom45of the people that have been dealing with the particular problem or concern(Antze, 1976; Back & Taylor, 1976; Maton, 1989; Suler, 1984). Suler states: “aself-help group is often founded on an ideology; a system of beliefs, attitudes, andvalues, that helps its members define their problem and how it should bealleviated” (1984, p. 30).Of note here is the fact that many self-help groups have emerged as a resultof a desire to defend themselves against and to change a bad label or designationattributed to them by the larger culture (e.g., gay rights groups, handicappedgroups). Boshier states that “ideology structures our perceptions in particulardirections and often conceals or legitimates unequal power relations. Ideology isusually linked to a pattern of domination which privileges some groups overothers” (in press). There is the likelihood, then, that the ideology of a self-helpgroup wifi be counter to, or in some way at odds with the ideology of the dominantculture. Further, the degree to which this exists will likely indicate the amount ofemphasis and effort placed by the group on social action. Also, in some groups theideology is articulated to a greater degree than in others. Depending on the groupthe ideology may be quite rigid and limit some freedoms of members.Basis of PowerExperiential knowledge has been identified as a significant element in thesuccess of se]f-help group members to help each other and in terms of power, itconfers “referent” power to the provider. The professional care system hasprofessional knowledge and “expert” power. Social power is attributed to the46informal helper in the community caregiver system on the basis of their social or“lay” knowledge (Powell, 1990).CompositionThe groups are composed of members who have in common a problem ordisturbing situation. In some cases, like relatives of alcoholics or parents ofterminally ill children, the disturbing situation may be second hand. As well,some groups have sessions for both members and their support persons. Mostgroups have a mix of newcomers and veterans. The newcomers are essential tothe maintenance of groups as members leave after a period of involvement or“help” and are considered inputs.InputsSystems require continual inputs to maintain themselves and are importantbecause they influence the groups scope and complexity. There are a variety ofways that members of self-help groups contribute, usually by volunteering for jobswithin the organization. This is called “payback” by Powell (1990) and is asessential an input to self-help groups as is financial aid. Mentoring by seniormembers (veterans) is one familiar mode of payback. Money is usually raisedthrough charitable fund raising activities although some groups charge modestfees. In the professional system the inputs are formal, depending on fees forservice; the community system inputs are “altruistic” (Powell, 1990, p. 43).47Origin and SanctionFor the majority of self-help groups, the origin and sanction rests with themembership rather than with an agency or professional. Some groups (e.g., MakeToday Count) are started by professionals but usually they leave once the group isself-sufficient. Self-help groups may share some characteristics of professionalgroups but they rarely possess “societal legitimation so characteristic of formalhelp-giving professions” (Lieberman, 1979, p. 118).ControlSelf-help groups are controlled by their members and usually a democraticprocess prevails. Leadership is indigenous rather than external and egalitarianrather than structured (Katz, 1981). The old-timers or veterans become theleaders; those members “who have the problem and know a lot about it from theinside, from experiencing it” (Riessman, 1987, p. x). Professionals and agenciesmay be utilized for various functions but are often not involved in a centralcapacity.The nature of involvement of professionals with such groups and theattitude of professionals towards the groups has been of constant interest toresearchers (Farquharson, 1990). This arises from acknowledgement that thegrowth of these “aprofessional” groups was in part driven by dissatisfied healthcare consumers who chose self-help over professional help (Vattano, 1972;Durman, 1976). There is also concern that policies supporting increased personaland group responsibility for health diminishes societal responsibility for solving48conditions directly related to health problems, such as unemployment and lack ofadequate housing (Levy, 1976; Checkoway, Chesler and Blum, 1990).A recent work on classification of self-help groups utilized organizationaltheory to differentiate groups on the basis of the kind and locus of power andauthority used in various facets of decision making and leadership (Schubert andBorkman, 1991). Five types of groups are described: unaffihiated, federated,affiliated, hybrid and managed. The above typology will be used by researchers toexamine stages and life cycles of self-help groups.Organization DesignOrganization design is used to describe the degree of formality of theorganization, of which there is great variance between self-help groups. Self-helpgroups classed as formal would be those with an “explicit set of normative beliefs,guidelines for action, and actual procedures” (Powell, 1990, p. 37). Groups thathave many franchises such as Alcoholics Anonymous and Recovery, Inc. areviewed this way. Most self-help groups are less formal than professional agenciesbut not as informal as community caregiving systems (Powell, 1990).Other CharacteristicsKilhilea (1976) identifies collective will power and belief as an importantcharacteristic and stresses the importance of constructive action toward sharedgoals. Katz (1970) states that self-help groups share the qualities of small groupsand concurs that action s directed by the goals of the group.49The process of characterizing and classifying self-help groups has beenchallenging, given the great number and diversity of them. However, the effortsto clarify the characteristics and provide typologies has assisted in providing basesfor understanding them and in focusing empirical research.Developmental Stages or Life CycleAnother approach to increasing knowledge of self-help organizations hasbeen to study the changes that occur to them over time. The notion of adevelopmental process for self-help groups was first documented by Katz (1970).He delineated five stages as origin, informal organizational stage, emergence ofleadership, beginning of formal organization and beginning of professionalism.The fact that many self-help organizations shun professional involvement has beena criticism of this model and Katz now concedes this (1981). In contrasting thedynamics of seff-help groups with professional therapy groups, the “aprofessional”dimension of self-help groups is considered to be an advantage (Gartner andRiessman, 1979). Back and Taylor (1976) proposed five stages of development as:agitation, formation of a group, development of morale, formation of a generalideology and movement to an expressive or political stage. Difficulty with thismodel is evident as a number of self-help groups choose to not become involved insocial action.Borman (1979) suggests that groups can change, over time, on severalfronts: size and structure of program, program focus, nature of membership andleadership, sources of funding and articulation with professionals and agencies.50This approach appears to be the most useful for providing a realistic picture of thegrowth of a self-help group.Processes and MechanismsAs well as by their vast popularity, self-help groups have attracted theinterest of researchers because of their seeming success in helping segments of thepopulation that tended to not benefit from professional psychotherapy (Antze,1976). Researchers were driven to discover the processes and mechanismscontributing to the efficacy of self-help groups.One of the earliest proposals regarding positive effects in self-help groupswas identified by Riessman (1965) as the “helper-therapy principle.” The goal ofhelping others is a strong motivation within the groups and the notion of helpingas being therapeutic in itself is supported by knowledge that helpers benefit byincreases in. confidence, learning, feelings of equality and social approval(Riessman, 1965). Silverman (1978) views the role of helper as a stage in the“mutual aid process” but cautions that not all members move from being arecipient of help to being a helper.Other processes identified (Blair, 1987; Levy, 1976; Lieberman, 1979;Powell, 1987) are common to “small group work” and relate to extensive studies ongroups such as that collected by Cartwnght and Zander (1968). These processesare underpinned by the psychological and educational orientations of behaviorism,cognitivism and humanism and of social learning theory. Behavioral processesidentified are: direct and vicarious reinforcement, training, modelling and personal51goal setting. Processes of a humanistic orientation are empathy, self-disclosureand catharsis. Processes that fit a cognitive learning framework are: explanation,information and advice and problem solving (Levy, 1976). The most frequentlyused processes are empathy, positive reinforcement, self-disclosure, mutualaffirmation, morale building, personal goal setting, catharsis and explanation(Levy, 1976). Impetus for research in this area came from the desire to provideguidance to leaders structuring and facilitating self-help groups.Other researchers Antze, 1976; Borkman, 1976) claimed that focus on theseprocesses alone provided an incomplete picture of the helping potential of thesegroups. They argue that of equal importance is the body of knowledge about theproblem of concern and of the ways the group has developed to solve or amelioratethe problem. Borkmans (1976) focus has been to identify the experiential natureof the knowledge base to distinguish self-help group “treatment” form thatavailable from professionals or lay persons. Antze (1976) amves at a similarposition but uses the term “ideology” to denote the specialized teaching of a group.Both discuss how group processes support the members in learning.Self-Help Group IdeoloAntze (1976) states that the common view of peer psychotherapy “neglectsthe very feature of these groups that their members take most seriously: theideology of the group” (p. 324). In this context, the concept “ideology” is used todescribe the specialized teachings based on the wisdom developed about theproblem of concern to the group. Included, as well as the explicit beliefs, are the52rituals, rules of behaviour, slogans and “even favourite turns of phrase” (p. 324).Back and Taylor (1976) explain that people look for general principles based onsuccess that can be considered a general ideology.Antze (1976) claims that the group is persuasive in promoting its ideologythrough the sharing of experience; that beyond the catharsis and validation ofconfessing there is a subtle form of indoctrination. He has supported hisperspective with the theoretical work of Frank (1961) who argues that effectivetherapy achieves the goal of changing the client’s “assumptive world.” Antze(1976) claims that the effectiveness of self-help groups is both promoted andsustained by their unique ideologies. Lieberman (1979) has noted that one of theways that self-help groups vary is in the degree to which their ideology isarticulated.Demonstrating a similar perspective, Powell (1987), in his examination ofreference group processes, views “personal change as both the cause andconsequence of culture” (p. 72). Levy (1976) also gives support to this proposition.He identified as an important cognitive mechanism “the provision of an alternativeor substitute culture and social structure within which members can develop newdefinitions of their personal identities and new norms upon which they can basetheir self-esteem” (1976, p. 320). Lieberman suggests that a common changemechanism in self-help groups is that of “perspective alteration in which smallgroups offer alternative belief systems about source, cause, and cure of theaffliction or problem” (1979, p. 196). From the perspective of theoreticalorientations to adult learning, studies on transformative or emancipatory learning53may provide explanation in this dimension. Similar to the concept of ideology andalso proposed as a dynamic mechanism in self-help group processes, is the concept“experiential knowledge” (Borkrnan, 1976).Experiential KnowledgeThe concept of “experiential knowledge” was developed and has been usedalmost exclusively by Borkman (1976, 1984 1990). She defines experientialknowledge as: “truth learned from personal experience with a phenomenon ratherthan truth acquired by discursive reasoning, observation, or reflection oninformation provided by others” (1976, p. 446). It is information or know-howgained from personal participation and similar to Antze’s interest in ideology,Borkman believes it is the presence of this dynamic that creates a change processin self-help groups different than the processes in professional therapy.Experiential knowledge, however, is neither well understood nor legitimated bysociety and although it has previously been differentiated from professionalknowledge, it needs also to be distinguished from lay or folk knowledge (Borkman,1990).Three features specifically distinguish experiential knowledge fromprofessional knowledge. Experiential knowledge is: “(1) pragmatic rather thanscientific, (2) oriented to here-and-now action rather than to the long termdevelopment and systematic accumulation of knowledge, and (3) holistic and totalrather than segmented” (Borkman, 1976, p. 449).54Personal participation in a phenomenon is emphasized as the basis ofgaining experiential knowledge and is combined with an attitude of “what oneexperiences does indeed become knowledge” (Borkman, 1976, p. 447). Thesefactors distinguish it from both professional and lay knowledge. Lay knowledge isoften passed from one generation to another as in folk lore or is learned frommedia representation of scientific or professional knowledge. It is often equatedwith common sense or called “recipe” knowledge (Borkman, 1990). Professionalknowledge is specialized and is both developed and transmitted by an establishedoccupation. Professional knowledge usually requires credentials for use inpractice.Within self-help groups there is a conviction of the validity and authority ofexperiential knowledge (Borkman, 1976, p. 447). The dynamic of “membersreflecting on their personal experiences in living through and resolving a problem”is believed to strengthen faith in the validity of experiential knowledge (1990, p.5). Borkman suggests that common language is likely to develop as a sign of“culture” (1990. p. 26). Experiential knowledge is not usually just discussed;action is viewed as important and resulting changes may involve a transformationin a member’s perspective as well as behaviour (p. 25). Lieberman (1979) suggeststhat one mechanism of cognitive restructuring is the exposure of members to theapproaches to a common problem used by other members.Experiential knowledge is gained by involving the emotional sphere as wellas the cognitive sphere in the learning. Borkman states that “feelings are a partof the language of the heart or a language of being that are similar among peers55who have talked with each other about their common predicament” (1990, P. 25).In contrast professional relationships are noted for the qualities of distance andobjectivity.Borkman (1990) believes that the relationship of individuals to a problem orconcern forms the basis for different perspectives or frames of reference. Theexperiential frame of reference is limited to those who have experienced a certainphenomenor and it is therefore, a different frame of reference than that used byprofessionals or lay persons. The need for recognition of the experiential frame ofreference and of experiential knowledge as a distinctive component of self-helpgroups is clearly presented by Borkman (1976, 1990). Recently other researchershave acknowledged self-help groups on a similar basis (Checkoway, Chesler &Blum, 1990; Powell, 1990).Experiential knowledge and ideology are presented as two elements in thehelping processes of self-help groups that can be linked to theoretical writings inadult learning. Since a major focus of this study is exploration of the phenomenonof adult learning within the seff-help group, experiential knowledge and ideologyare used as the signposts for references in the literature on adult learning. Theother notable elements of learning in self-help groups are learning with peers andthe notion of transformation.Research Problems and Directions for the FutureTwo problems in doing research with self-help groups are consistentlymentioned in the literature. Study of these groups has always been hampered by56the problem of their “exclusive” nature and restricted membership. Also, it isdifficult to study outcomes in a comparative way because of the great diversity inthe groups and the fact that the participants are immediately differentiated fromthe general population by their act of joining the group.The need for more research is revealed frequently in the literaturereviewed. Durman (1976) states that if self-help is seen as a direct substitute forprofessional therapy then evaluation of outcomes is crucial and criteria forassessment are needed. Lieberman and Bond (1978) concur with the need forassessment and state that there are conceptual problems because many groupshave different objectives and researchers must work from the perspective of thegroups. Killilea signalled the need for historical studies and “multifactorialanalysis which takes into account psychological factors, charismatic leadership,and chance as well as economic, political, historical, and other social forces” (1976,p. 80). A recent evaluation of the status of research indicated more use ofanalytical techniques and use of theoretical frames from other disciplines. Use oforganizational theory to develop a new typology of self-help groups is evidence ofthis (Schubert and Borkman, 1991).Summary of Literature on Self-Help GroupsThe literature on self-help groups is extensive, varied and illuminating.Characteristics of self-help groups have been delineated in ways that provideframeworks for their study (Borman, 1979; Levy, 1976; Maton, 1989; Powell,1990). The characteristics identified provide a framework for the description of57HOPE as a self-help group in the context of other self-help groups and care givingsystems. The characteristics are: focal problem, purpose, source of help,knowledge base, basis of power, composition, inputs, origin and sanction, control,and organization design.A number of the helping processes and mechanisms active in self-helpgroups have been identified from the perspective of psychology (Levy, 1976;Maton, 1989; Powell, 1987). Learning from peers is the perspective taken for thisstudy. References on change processes in the literature on seff-help groups thatare of particular interest are “experiential knowledge” and “group ideology” asboth these concepts also appear in literature on adult learning. Often in studies ofself-help groups the general term “transformation” is used to describe the personalchanges that happen to group members (e.g., Borkman, 1984). The theme oftransformation is well developed in the literature on adult learning as it forms thebasis for a body of theoretical work on transformative learning (Taylor, 1989,Mezirow, 1978, 1981, 1991; Mezirow & Associates, 1990). Literature on adultlearning which relates to these elements is reviewed in the next section of thischapter.Literature on Adult LearningThis section of the chapter is a review of selected literature on adultlearning. It was intended that understanding of the phenomenon of adultslearning in the context of a self-help group would be enhanced by describing andcomparing the theoretical assumptions presented in the literature on self-help58groups with theoretical works on adult learning. The literature reviewed in thissection was selected for its potential to focus, analyze and interpret the datacollected on the learning experiences of members of HOPE.The features of HOPE that appeared to be similar to those found in otherself-help groups and to connect with various studies on adult learning were:development of experiential knowledge of a shared problem or concern, a groupideology different from that of the dominant culture, the experience of learningwith and from peers (established on the basis of a common problem or concern),and significant changes or transformative experiences of participants.The concepts and theoretical propositions selected from the literature onadult learning were meant to be heuristic in nature. They were used to guide theexploration by directing questions and observations for the data collection. Thissection begins with a brief overview of the literature on adult learning.Overview of Literature on Adult LearningThe literature that deals either directly or indirectly with adult learning isboth extensive and diverse. Merriam, (1987, 1988b) and Merriam and Cafferella(1991), have attempted to describe, organize and evaluate much of that literatureaccording to its ability to distinguish adult learning as different from childlearning and the degree of explanatory power it offers.In a summary article by Merriam (1988a), six main categories of literatureare defined. Three sections are composed of general literature that is widely usedby adult educators. Ordered from low to high in their degree of explanatory59power, they are: definitions and types of learning, concepts related to learningability, and general learning theories. The general learning theories definelearning from the perspective of well known psychological schools (e.g.,behaviorism, cognitivism, humanism) and have been very influential in theformation of adult education programs. Program facilitators often draw on aspectsof one or more traditions but the personality or culture of an adult educationorganization can usually be linked to the dominant values or philosophies of one ofthese theoretical schools (Cafferella & O’Donnell, 1987).There are also three sections of literature that distinguish adult learning asa unique phenomenon. Considered to have the lowest explanatory power but wellinvestigated are characteristics of adult learners such as: motivation, participationand adult development. Considered more useful in terms of explanation are theconcepts that have come to be identified with adult learning such as: self-direction,experience, pragmatism, voluntarism and praxis. The literature reviewed in thelast category is labelled “theories of adult learning” and provides the mostexplanatory power (Merriam, 1988b). Included in this category are: andragogy(Knowles, 1980), Characteristics of Adults as Learners or CAL (Cross, 1981),proficiency theory (Knox, 1980), theory of margin (McCluskey, 1963),conscientization (Freire, 1970) and perspective transformation Mezirow, 1975,1981, 1991).Merriam (1988b) cautions that none of the writings she reviewed completelyqualify for the status of “theory” based on the criteria of practical application,understanding and universality developed by Rachel (1986, cited in Merriam60(1988b). It is notable that these criteria fit well with the positivistic paradigmwhich utilizes scientific methodology to generate principles. Therefore, her worksuffers from criticism for its lack of consideration of important phenomenologicalstudies on learning (e.g., Marton, Hounsell & Entwistle (Eds. 1984)). Byexamining both the content and process of learning as a unified whole, Martonand Saijo (1984) determined different approaches to learning which they havenamed “deep” and “surface.” This study and others focusing on natural learningsituations have created new perspectives on adult learning and study in the field.Also absent from the study by Merriam (1988b) are references to extensivewritings on experiential learning (e.g., Keeton and Tate, 1978; KoIb, 1984).Clearly, there exists a body of literature relating to adult learning that is diverseand extensive.The next sections of this chapter will focus specifically on literature selectedon the basis of a relation to the elements identified as significant in the literatureon self-help groups. The initial selection of writings was organized under theheadings of: experiential knowledge, situated learning which includes the conceptslegitimate peripheral participation and zone of proximal development, andtransformative learning.Experiential KnowledgeIn spite of the abundance of literature on experiential learning (e.g., Keeton& Tate, 1978; Kolb, 1984, Torbert, 1972) the concept, “experiential knowledge” wasdifficult to locate. Burnard (1988) includes it in his proposal of a “theory of61knowledge” as a basis for experiential learning. Using work of Heron (1981), hedistinguishes three kinds of knowledge: propositional, practical and experiential.Propositional knowledge is knowledge of facts or truths such as is stated inpropositions and in the sense that it is verbal, it is language dependent (Heron,1981, p. 158). Although it is abstract, it is extensive and encompasses much ofwhat is known about subjects, persons and things. Practical knowledge is“knowing ‘how to do’ as exemplified in the exercise of some special skill orproficiency” (Heron, 1981, p. 158). These domains of knowledge can overlap or bequite independent. For example, one can know how a car engine works but nothave the skills to fix it or vice a versa (Heron, 1981). Experiential knowledge isdefined by Burnard as that “gained by direct encounter with a subject, person, orthing” (1988, p. 128). Within the domain of experiential knowledge, both thesubjective and affective nature of the encounter contribute to knowledge andtherefore it is personal, idiosyncratic and difficult to put into words (Burnard,1988). Burnard (1988) claims that once experiential knowledge is well articulatedit becomes propositional knowledge. This is viewed as being important because“views and practices are modified in the light of our own and other’s experiences”(Burnard, p. 129). The notion of a shift of experiential knowledge to propositionalknowledge may assist in understanding the developmental process of membersfrom newcomer to veteran.Borkman (1976) claims that in self-help groups, power and leadership isattributed on the basis of expertise with experiential knowledge related to solvingthe problems of concern. This is likely to be “practical” knowledge and62consideration must be given to the possibility that experiential knowledge canbecome practical knowledge. Some acknowledgement of this possibility isindirectly provided by Dewey (1933, cited by Boud, Keough and Walker, 1985) whostated that there are two kinds of experiential learning processes: a trial and errorprocess that results in “rule of thumb” decisions and a reflective process whichinvolves connecting the parts of an experience and perceiving the relationships.Experiential LearningThere is a significant amount of literature on experiential learning,although the literature is variously named “learning from experience” (e.g., Boyd& Fales, 1983; Cell, 1984; Torbert, 1972), “learning by experience” (Keeton & Tate,1978) and “experiential learning” (Kolb, 1984). The literature appears to includetwo large sets. One set focuses on theoretical considerations and defines learningprocesses that emphasize experience as an integral aspect (e.g., Jarvis, 1987b;Koib, 1984). The other set refers essentially to “planned” experience-basedlearning (e.g., Keeton & Tate, 1978). Much of this literature is aimed atenhancing planned learning and experience is often simulated and is referred toas simulation, role-playing, and games (Keeton & Tate, 1978). These writingsprovide direction for practice and debate policy concerns related to credentials, etc.All the writings focus on experience as an essential aspect of learning and promotelearner involvement in processing the experience to the extent that learning ispersonalized.63The essence of experiential learning is learning through “firsthand, full-bodied realities” (KoIb & Lewis, 1986). Keeton and Tate define experientiallearning as: “learning in which the learner is directly in touch with the realitiesbeing studied” and contrast it to “learning in which the learner only reads about,hears about, talks about, or writes about these realities but never comes in contactwith them as part of the learning process” (1978, p. 2). Boud, Walker and Keoughcontrast experiential learning with “classroom learning which concerns symbolic orinformation assimilation” and state experience “consists of the total response of aperson to a situation or event: what he or she thinks, feels, does and concludes atthe time and immediately thereafter” (1985, p. 18). These definitions areconsistent with Borkman who states that experiential knowledge is: “truth learnedfrom personal experience with a phenomenon rather than truth acquired bydiscursive reasoning, observation, or reflection on information provided by others”(1976, p. 446).Processes of Experiential LearningKoib’s model of experiential learning (Kolb, 1984) has frequently been usedas a basis for examination and discussion of the experiential learning process (e.g.,Boud, Keough, & Walker, 1985; Jarvis, 1987b). Based on the work of Lewin inaction research and laboratory training, the model illustrates four stages in theexperiential learning process: concrete experience, observations and reflections,formation of abstract concepts and generalizations, and testing implications ofconcepts in new situations (Koib & Fry, 1975). Kolb has developed this basic64model into a major work titled Experiential Learning: Experience as the Source ofLearning and Development (1984). It is well detailed and therefore difficult tosummarize. The four major steps are illustrated in Figure 1.Figure 1: The Experiential Learning ModelSource: Kolb, 1984, p. 21.More relevant to this study than the details of the steps of the model is theemphasis placed on reflection in the learning process and explicit consideration ofthe affective dimensions of experiential learning (Boud, Keough & Walker, 1985).Reflection is described by Boud, Keough and Walker as a generic term and isdefined as “those intellectual and affective activities in which individuals engageto explore their experiences in order to lead to new understandings andappreciations” (1985, p. 19). The fact that only the learners themselves can reflectConcreteTedng Implications Observations andof Concepts in New (R0)SituationsFo(AC)adon of AbstractConcepts and Gnerallzadons65and personalize learning is emphasized. It is important activity because it is “theworking with experience” in the sense of mulling it over and evaluating it, that isessential to the learning process (p. 19).The importance of reflection is also highlighted in work by Boyd and Fales(1983) who claim it is the key to learning from experience. Boyd and Fales defineit as the “process of creating and clarifying the meaning of experience (present orpast) in terms of self (self in relation to self and self in relation to the world)”(1983, p. 101). Pearson and Smith state that reflection lies at the core ofexperience-based learning and that “without it, experiences may remain asexperiences and the full potential for learning by the participant may not berealized” (1985, p. 83).References to learning in groups, although not emphasized, are positive.Reflection is viewed as a personal and private activity that can be assisted by“comparing notes, roundtable discussion, and informal group discussion” (Boud,Keough & Walker, 1985, p. 8).Attention to the affective aspect of learning is provided by Boud, Keoughand Walker, by naming it as an element of reflection which is delineated as“returning to the experience, attending to feelings, and re-evaluating theexperience” (1985, p. 21). The importance of both reflecting on experience andattending to feelings as an element in the process were considered in the datacollection process for this study.66Situated Learning: Legitimate Peripheral ParticipationOne of the central aspects of participation in a self-help group is learningfrom peers and the resulting phenomenon of growth of the participants,specifically, movement from novice to veteran. Several references to this shiftwere found in the literature on self-help groups but learning from peers is not welldeveloped in literature on adult learning. There is one notable exception. Thework of Lave and Wenger (1991) relates to this almost in its entirety. In theirearly work they attempted to clarify and make useful prior studies onapprenticeship. This led to their presentation of a social practice theory oflearning (situated learning) which hinges on their development of the concept oflegitimate peripheral participation. This concept “provides a way to speak aboutthe relations between newcomers and oldtimers, and about activities, artifacts andcommunities of practice” and “the process by which newcomers become part of acommunity of practice” (p. 29). The conceptual work of Lave and Wenger isexplored further because of its potential value in interpreting the observationsmade and narratives obtained from the participants situated at HOPE CancerHealth Centre.Background of “Situated Learning”Development of the concept of “situated learning” was important early workfor Lave and Wenger. Struggle with both narrow and broad meanings of “situatedlearning” led Lave and Wenger to a conceptualization emphasizing the integralrelationship between learning and the activity in the social situation and the view67that “agent, activity and the world are mutually constituted” (1991, P. 33). Thisconcept became the basis for claims of the relational character of learning andknowledge and of the “concerned (engaged, dilemma driven) nature of learningactivity for the people involved” (p. 33). However, they had difficulty indistinguishing it from “learning in situ” and “learning by doing” although they hadcome to an understanding of situated learning as being much more encompassing.This prompted further exploration and they formulated the concept of legitimateperipheral participation as being more expressive of their central premise thatlearning is “an integral and inseparable aspect of social practice” (p. 31).Legitimate Peripheral ParticipationThe concept of legitimate peripheral participation is central to the work ofLave and Wenger. It is “proposed as a descriptor of engagement in social practicethat entails learning as an integral constituent” (1991, p. 35).It is the linking together of the three words that provides power to theconcept; “its constituents contribute inseparable aspects whose combinationscreate a landscape--shapes, degree, textures--of community membership” (p. 35).No part alone conveys the same meaning and there are not meant to be opposingconcepts such as illegitimate peripheral participation. Peripherality is meant tosuggest the varied and multiple ways of engaging or being located as a participantand when legitimacy is connected to peripheral participation, a demand is createdto attend also, to issues of social organization and control of resources.68Lave and Wenger (1991) caution that legitimate peripheral participation isan analytical way of understanding learning rather than a teaching technique oreducational strategy. The concept is meant to have high potential as an analyticaltool because any analysis would be multilayered and refer both to the developmentof knowledgeably skilled identities in communities of practice and to thedevelopment and reproduction of these same communities. It would also have toaddress how social and political influences impact communities of social practiceover time.LearningIn the view of Lave and Wenger (1991), the analytical focus is shifted fromthe learner as an individual to learning as participation in the social world andaway from the notion of learning as strictly a cognitive process to one thatencompasses social practice: “as person-in-the-world, as member of a socioculturalcommunity” (p. 52). Their theory of social practice emphasizes “the relationalinterdependency of agent and world, activity, meaning, cognition, learning, andknowing” (p. 50). Learning implies personal changes as a result of the potentialsenabled by the interactions in these systems. Meaning is socially negotiated inthe social and cultural world which both acts upon and is changed by the activitiesof individuals. In their words “in a theory of practice, cognition andcommunication in, and with, the social world are situated in the historicaldevelopment of ongoing activity” (p. 51).69The text by Lave and Wenger (1991) has five illustrative cases and in eachexample, learning is a more prominent phenomenon than teaching and it is notedthat the curriculum evolves out of the common practice of the community. Accessas legitimate peripheral participants allows learners to “develop a view of whatthe whole enterprise is about and what there is to be learned” (p. 93). Theoutcome of legitimate peripheral participation is that both learners and thecommunity of practice change. While newcomers change with the acquisition ofknowledgeable skills, the community changes through the activity andparticipation of the individuals involved. Individual learning is important for themaintenance of social practice and the opportunity to learn is essential tosociocultural transformation (Lave & Wenger, 1991).A concept used by Lave and Wenger (1991) and referred to in otheracademic writings on adult learning (e.g., Kolb, 1984; Taylor, 1989), is “zone ofproximal development.” As it clearly refers to learning with peers, it is consideredfurther.Zone of Proximal DevelopmentThe concept “zone of proximal development” was developed by the Russianpsychologist Vygotsky (1978). His work, based on the development of higherpsychological processes, was centered on studies of child development but includesconcepts which can be applied to adult learning. Evidence of this is the frequencywith which this concept is cited by adult learning theorists (e.g., Kolb, 1984; Lave& Wenger, 1991; Taylor, 1989).70For Vygotsky, individual development is rooted in society and in culture andis a result of the interweaving of elementary psychological processes whichoriginate in the biological being, and higher functions which are of social culturalorigin. Basic to learning are the development of language and symbols, for theyare necessary for combining in the mind elements of the past and present and forrepresenting future actions. Also critical to the learning process is interactionwith more capable others.The zone of proximal development is defined as: “the distance between theactual developmental level as determined by independent problem solving and thelevel of potential development as determined through problem solving under adultguidance or in collaboration with more capable peers” (Vygotsky, 1978, p. 86).Individuals differ in their readiness to learn and this needs to be acknowledged inlearning situations. When individuals are in the company of teachers, presentedwith learnings that are in their “zone,” then learning is most likely to happen.This implies careful planning of learning experiences. Also, access to appropriatelearning experiences is necessary. It is this latter aspect that Lave and Wenger(1991) emphasize but this concept is pertinent to this study also because itacknowledges the phenomenon of learning from more experienced peers.Transformative LearningThe central theme of the writings in this area is perspective transformative,a kind of learning that involves a major change in perspective or world view. Theprocess “involves a sequence of learning activities that begins with a disorienting71dilemma and concludes with a changed self-concept that enables a reintegrationinto one’s life context on the basis of conditions dictated by a new perspective”(iViezirow, 1991, p. 193). A diagnosis of cancer, and the ensuing treatment processare at best a “disorienting dilemma” and it was anticipated that at least for somemembers, learning is of a transformative nature. This provides one link to thisset of literature.Another reason this literature appeared to be relevant and useful is thatAntze (1976) identified the adoption of a group’s ideology or set of beliefs by itsmembers as the central mechanism by which self-help groups help the membersachieve their goals (Antze, 1976). A self-help group’s ideology is usually somewhatat odds with the dominant perceptions of the focal problem of a group or definesthe problem in a way that better integrates the experience. Therefore, it wasbelieved the concepts discussed in the models of transformative learning couldhelp explain this process.The growing body of theoretical work on transformative learning (IViezirow,1978, 1991; Mezirow & Associates, 1990; Taylor, 1989) was sparked by Mezirow’sintroduction of “perspective transformation” as a form of adult learning in 1978.Closely related and utilized by Mezirow in his early studies, is the work of Freire(1970) in “emancipatory education” and his development of the concept of“conscientization.” The context of the original work of these two adult educatorswas very different; Mezirow began his theoretical development with a study of awomen’s work re-entry program and Freire worked in “circles of culture” with72peasants in Brazil. Similarity in their work has however, prompted studies ofcomparison and synthesis (e.g., Carrol, 1987 Taylor, 1989).Both Mezirow and Freire describe a developmental or evolutionary processwhich involves acknowledgement of the “cultural assumptions governing the rules,roles, conventions and social expectations which dictate the way we see, think, feeland act” (Mezirow, 1981, p. 11). This recognition may result from an individualawareness of the ineffectiveness of ones current perspective in dealing with certainproblems or from a sudden insight, or may be the result of a “conscientization”process whereby groups are assisted to become more aware of “both thesociocultural reality which shapes their lives and of their capacity to transformthat reality” (Freire, 1970, p. 27). Also both theorists emphasize as integral, theplace of critical reflection and critical dialogue in the process of reframing ortransforming meaning perspectives. Of note is the fact that work on moral andintellectual development (e.g., Kitchener and King, 1990) supports the notion thatcritical reflection and critical dialogue are attributes of adults therebydistinguishing transformative learning as adult learning theory.Emancipatorv EducationFreire’s work has been described as a model of education which focuses onboth processes and techniques. It is referred to as “emancipatory education”because the goal is emancipation from constraining social or political forms(Merriam, 1987). Recently, Mezirow and his associates defined emancipatoryeducation as: “an organized effort to precipitate or to facilitate transformative73learning in others” (1990, P. xv). While this definition links the concept oftransformative learning with emancipatory education, it leaves out the importantcomponents of “problem posing” and social change which are integral to Freire’swork and are what the concept emancipatory education is more commonlyassociated with.The model has caught the attention of health workers seeking to helpindividuals and groups problem solve around the issues that impact their healthstatus. In these cases the goal of action resulting in social change is evident. Ithas already been discussed that some self-help groups evolve into “social action”groups, providing one commonality. Perhaps more pertinent to this study is one ofthe principles that is stressed in the process: “the imperative nature of the totalparticipation of the people themselves in a process based upon dialoguing betweenequals” (Minkler & Cox, 1980, P. 312). Establishment of a milieu of mutuality, or“co-investigation” by leaders and learners is key to Freire’s model (Freire, 1970).Transformative LearningThe term “transformative learning” appears to have evolved as a conceptthat is close to that of “perspective transformation” but by being more general, canaccommodate the work of Mezirow and of other theorists as well. Mezirow and hisassociates define transformative learning as: “the process of learning throughcritical self-reflection, which results in the reformulation of a meaning perspectiveto allow a more inclusive, discriminating, and integrative understanding of one’sexperience. Learning includes acting on these insights” (Mezirow & Associates,741990, P. xv). Perspective transformation has been defined as:the emancipatory process of becoming critically aware of how and why thestructure of psycho-cultural assumptions has come to constrain the way wesee ourselves and our relationships, reconstituting this structure to permit amore inclusive and discriminating integration of experience and acting uponthese new understandings. It is the learning process by which adults cometo recognize their culturally induced dependency roles and relationships andthe reasons for them and take action to overcome them (1981, p. 6-7).Basic to this process of transformation is the concept of “meaningperspective” and what it stands for. Meaning perspective is defined as “thestructure of assumptions that constitutes a frame of reference for interpreting themeaning of an experience” (Mezirow & Associates, 1990, p. xv). This concept isvery close in meaning to that of “personal construct” (Kelly, 1955), “paradigm”(Kuhn, 1962), and “world view” (Osborne, 1985). Related definitions of learningare expressed as a change in world view, a paradigm change and modification ofpersonal constructs. Although the elements are similar, one of the ways thedefinitions vary is in emphasis on the involvement of the different human domainsin the learning process. Mezirow is clear in his discussion of perspectivetransformation that cognitive, affective and conative dimensions are all involved(1990, p. 12) and exploration of the social-cultural base of meaning perspectives isprovided in his later work (1991).The importance of this concept in the learning process comes from theoperative use of meaning perspectives in the everyday lives of adults. These setsof assumptions, or meaning perspectives, structure the way we interpret ourexperiences, and in the sense that they frame our perceptions they create “habitsof expectation” (Mezirow, 1990, p. 1). These habits of expectation evolve from a75biographically based stock of knowledge and are generally useful in everydayexperiences. They allow individuals to respond to their environment and performactivities more or less routinely (Jarvis, 1987b). It is when there is a discontinuitybetween peopl&s habits of expectation and their experiences in the socio-culturaltemporal world that the opportunity for transformative learning occurs. The goalof transformative learning is to take into account how these habits of expectationinfluence our meaning making.The theoretical work on transformational learning has utilized the writingsof other theorists, for example: Kelly, Nichol, Bruner, and Habermas. Detailedexamination of the work of these authors would be both interesting andilluminating but is beyond the scope of this study. Instead, to provide an overviewof transformation learning, a model of transformative learning is introduced.Model of Transformative LearningSynthesizing the works of several theorists and a dynamic personal “case” oftransformative learning, Taylor (1989) has constructed a “model of transformativelearning.” She states that while the model could present a static picture of aprocess that is both complex and dynamic it has the power to clarify the “unique”features of transformative learning (p. 195). It is presented here as a concise wayto develop understanding of transformative learning and the possible relevance ofsome of the concepts to adults learning within the context of a self-help group.Taylor introduces transformational learning as a “cyclical process of changeor transformation in consciousness which takes place in three phases- -generation,76transformation, and integration” (1989, p. 196). These phases are not unlike thesteps that Mezirow first outlined: alienation, reframing, and contractual solidarity(1978, p. 105). In Taylors’s model each of the three phases is comprised of twosteps, resulting in six steps in a continuum (Figure 1). A brief summary of eachstep follows.IV.LEAPORSHIFTOFTRANSCENDENCEShiftgroundsofreality,orleaptonewrealityorperspectivethrough:1.suddeninsight2.gradualrevelationIII.REACHINGTHETRANSITION_POINT3.makedecisiontoleaporshift2.leaporshift“Justhappens”V.PERSONAL_COMMITMENTMakingdecisiontoproceedwithintegration(actofintention,purpose,will)II.CONFRONTINGREAI,ITYPeriodofIntense,concentratedengagementwithexperienceInvolvedin“makingareality”“worid—makiiig”“consciousness-creating”3.self—inducedandself—propelled2.other—Inducedandfacilitated(i.e.,byeducatorortherapist)I.ENCOUNTERINGTRIGGEREVENT(S)Realityde,nan,jsattention(anomaIies,contradictIons.disorlentj,igdilemmas)I.elcteir,aI(social)events2.internal(psychological)eventsVI.GROUNDINGANDDEVELOPMENTNurturingthegrowthofthenewrealitythrough:—tryingoutnewvisioninownlire-space—lettinggoofoldpatterns—acceptingandactingonnewpatterns—InterweavingoldandnewpatternsFigure2:Modeloftransformativelearning.ØONflessnSSource:Taylor,1989,p.217.78Phase one: Generation of consciousnessStep one of this phase is called “encountering trigger events” and is apreparatory period where there is some demand for attention to life events.Examples of trigger events are: life shattering events involving major upheavalsuch as war, rapid social change or environmental disaster; or upheaval at a morepersonal level such as divorce, death or a serious illness; or a disorientation inmeaning systems resulting from personal introspection (Taylor, 1989, p. 196). Thenotion of trigger events is consistent with other learning theories, for example,Jarvis speaks of “disjunction between individuals own biographies and the sociocultural-temporal world of their experience” creating the potential for a learningexperience (Jarvis, 1987a, p. 168).Following this trigger event, there is a necessary “confronting reality” step.This consists of “a period of intense engagement with experience in which there isa heightened concentration and focus of the learners’ energies on the issuesprovoked by the trigger events” (p. 198). Although this step may be entered bythe learner alone, others including educators, may become involved in facffitatingthis step. Integral to this step, are reflection, dialogue and the “fusion ofreflection and action” (Taylor, 1989, p. 199).The importance of critical reflection and critical self-reflection is flagged bythe publication of a text devoted to fostering critical reflection in adulthood(Mezirow & Associates, 1990). Mezirow (1981) previously delineated seven levelsof reflectivity, with the last three involving critical consciousness. A recent textprovides the following definitions:79Reflection: Examination of the justification for ones’s beliefs, primarily toguide action and to reassess the efficacy of the strategies and proceduresused in problem solving.Critical reflection: Assessment of the validity of the presuppositions of one’smeaning perspectives, and examination of their sources and consequences.Critical self-reflection: Assessment of the way one has posed problems andof one’s own meaning perspectives (Mezirow & Associates, 1990, p. xvi).For this study, however, the specificity of these concepts is not so important as isan emphasis on reflection as a key element in the process of transformativelearning. The results of critical reflection are intended to create “alternativepossible new realities” (Taylor, 1989, P. 199). This process is considered to be apersonal process, in that it takes place within the mind of the individual.Communication and language skills are basic to learning processes and areespecially emphasized by theorists using social models of learning (e.g., Vygotsky,1978). Critical reflection and critical self-reflection are enhanced by dialogue withothers through the sharing and generating of meaning. Mezirow emphasizes theimportance of critical dialogue because “in communicative learning there are noempirical tests of truth; we rely on consensual validation of what is asserted”(1990, p. 11). He suggests that transformative learning is not a private affair likeinformation processing is, but is “interactive and intersubjective from the start”(Mezirow, 1990, p. 364).Another feature of this step in transformative learning is a fusion ofreflection with action. Fusion is characterized by the integration of all elements ofexperience: thought, feeling and action, and is necessary throughout thetransformative learning cycle (Taylor, 1989, p. 220).80Phase two: Transformation of consciousnessThe two steps identified in this phase are “reaching the transition point”and “&‘shift or leap of transcendence” (Taylor, 1989, p. 202). The first step isdescribed as the point of transition between the confronting of reality and theshift. This step is characterized by the quality of a shift in energy and tension,indicating a readiness to take the next step. The next step is characterized by anawareness that a new perspective has developed in the consciousness. It is thisstep that is variously described as “conscientization,” the “development of possibleworlds” and a “transformation of perspective.” In this step, the affective quality ofexperience is often dominant as individuals become aware of the transcendence(Taylor, 1989).Phase three: Integration of consciousnessTaylor states the new knowledge, consciousness or vision must be“nurtured, grounded, implemented, extended, and developed or integrated into thelife pattern of the individual” (1989, p. 204). It happens over time and requiresthe steps of “personal commitment” and “grounding and development.” Thechallenge of turning the new vision into reality requires commitment and theenergy of this commitment is needed in the final step which involves both lettinggo and exploring options. At this time, the fusion of reflection and action areagain involved but the emphasis is on action. “Praxis” is a dominant concept inFreire’s work. To him, it meant “the action and reflection of men upon their world81in order to transform it” (1970, P. 66). Praxis is central to his work as the goal ofemancipation education is essential social change.Although explicit references to peer groups are not found in this set ofliterature, there are references to both social support and reference groups.Mezirow states:Moving to a new perspective and sustaining the actions which it requires isdependent upon an association with others who share the new perspective.Not only do you take their way of seeing for your own, but you must havetheir support and reinforcement to enable you to take action the newviewpoint reveals is in your interest” (1978, p. 105).Knowledge of the contributions of membership in a reference group in the processof transformative learning can be utilized to better understand the dynamics oflearning in a self-help group. The other links between self-help groups andtransformative learning are the various elements of the process that appearsimilar to the experiences of members of HOPE. The elements are a disorientingdilemma, a search for new meaning and opportunity for exploration of old and newmeaning perspectives.Themes from the other sections in the literature on adult learning were:the development of experiential knowledge, the transition of participants fromnewcomer to veteran status, readiness to learn from experienced peers and accessto learning experiences. All these elements have been explored as theoreticalpresuppositions to focus and organize the observations and narrative explorationswith the participants of HOPE.82CHAPTER FOURRESEARCH DESIGN AND METHODOLOGYThe qualitative approach to research was chosen for this case study. Thischapter discusses the methodology, why the method was chosen and how it wasapplied in selection of the research site, selection of the participants and design ofthe data collection and analysis.Selection of the Research MethodResearch methods are born out of certain assumptions belonging to themajor philosophies or traditions. Quantitative research is grounded in theempirical-rational paradigm. Qualitative research is consistent with thenaturalistic paradigm which assumes that reality is “a multi-layered, interactive,and shared social experience that can be studied from participant’s perspectives”(McMillan and Schumacher, 1989, p. 179). Meaning is personally and sociallyconstructed by individual and collective definitions of experiences (McMillan &Schumacher, 1989). Understanding of specific social phenomenon is best achievedby discovering the perspective of the participants in the situation (Merriam,1988a)The phenomena under investigation in this study are HOPE Cancer HealthCentre and the learning experiences of members of HOPE. As a self-help group ithas certain qualities and characteristics that can be described objectively.However, as a context for learning, some of its characteristics, such as its ideology,83can be determined only from the perspective of the members. Meaning of theideology is personally and socially constructed by the members in the context ofHOPE. The beliefs in the ideology may first be taken on faith by the members,but they become grounded when members validate the beliefs through their livedexperiences with cancer and cancer care. Therefore, the phenomena of interest,which are HOPE itself and the learning experiences of the members viewed asmultiple realities, are best studied within the naturalistic paradigm using thequalitative approach.Research DesignThe design of the research is case study. In order to provide full, richunderstanding of a phenomenon, one “unit of analysis” related to the researchfocus is selected by the investigator (Borg and Gall, 1989, p. 180). In this study,the unit of analysis is the self-help group, but two perspectives were taken. Thefirst perspective is HOPE as an organization in the larger context of other self-help groups and care giving systems. The second perspective is the innerworkings of this group. In this perspective, the self-help group is the context ofthe learning experiences for the members of HOPE and the focus is on adultlearning.One of the strengths of qualitative research is its discovery approach.However, the subjective nature of the data leads some to question the validity ofthe findings. External validity can be enhanced through “making explicit theconceptual framework which informs the study and from which findings can be84integrated or contrasted” (McMillan and Schumacher, 1989, P. 189). A frameworkof self-help group characteristics was developed from the literature on self-helpgroups to focus the collection of data for the description of the HOPE CancerHealth Centre. In order to focus the data collection on the learning experiences ofmembers of HOPE, writings on adult learning were searched for concepts andpropositions with explanatory potential. This search was directed by themes onindividual and group change found in the literature on se]f-help groups andliterature on adult learning. The theoretical concepts acted as heuristic devices inthe early stages of the research and were used later to help analyze, organize andinterpret the data.Another method of increasing adequacy in qualitative research is use of avariety of data collection methods. Participant observation of activities and reviewof written and videotaped materials complemented the planned interviews. Thedata collection methods will be discussed in a following section.Identification of SiteSelection of a self-help group as a research focus was directly related to myown participation in the HOPE Cancer Health Centre. I was both professionallyand personally interested in learning more about HOPE as a self-help group andmaking a description of HOPE available to others. As a health care practitioner Ihave been interested in personal lifestyle changes and health promotion activitiesfor some time and believed that exploring the learning experiences of members of85HOPE who were considered to be successful learners, would be illuminating tomyself as well as others.HOPE Cancer Health Centre is currently located at 2574 West Broadway,Vancouver, B.C., Canada. It was founded in 1980 after Claude Dosdall sought outother cancer patients interested in “helping each other.” Gartner and Riessmanstate that “both self-care and mutual aid activities are movements away from‘mediocentrism’ (health care that is medically centered) and emphasize the powerindividuals have for their own well-being” (1979, p. 91). This self-help group forcancer patients and their support persons emphasizes self-care and healing. Theword “HOPE” is significant for members because of both its literal meaning and asan acronym for: “helping ourselves psychologically everyday.”Both formal and informal learning and support activities are provided byHOPE and all activities are facilitated or organized by the veterans currentlyassuming leadership. As the unit of study, HOPE did not just provide “subjects”for the research; it provides the context for the learning experiences of themembers. HOPE was studied both as a group within the larger context of caregiving systems and as an organization providing learning opportunities for theparticipants.Characteristics of ParticipantsThe membership of HOPE is composed of both cancer patients and theirsupport persons. There were two sets of participants in the study: thoseinterviewed and those who attended the workshops which I attended.86The fourteen members interviewed were purposefully chosen for theirreputation as learners and their willingness to discuss their experiences as amember of HOPE and what their participation meant to them. One of themembers interviewed was a support person. Her husband died of cancer twoyears ago, which was about nine months after they joined HOPE. The otherthirteen members interviewed have had a diagnosis of cancer, twelve are currentlyin remission. The group of cancer patients interviewed was composed of theDirector of HOPE, the two other paid staff members and ten regularmembers. Since there are many different malignant diseases or cancers, it is notsurprising that the participants varied in the kind of cancer they had or have.They also varied in the stage of their disease and the health deficits experiencedfrom the disease and the treatments. One participant had been classed as“terminal” at the Cancer Agency and some others had cancers considered to bevery serious (e.g., liver metastases, brain tumour).Three of the members interviewed lived outside the vicinity of Vancouver.The interviewees varied in the degree of their involvement with the programs andactivities of HOPE. The age range in the group of members interviewed was 37 to73 years. Two on the interviewees were men. The interview participants have allbelonged to HOPE for more than two years.A total of 26 individuals participated in the two introductory workshops Iattended as a participant-observer. Thirteen of the participants at the workshopswere cancer patients. Two of them were men. In one workshop the range of ageof the cancer patients was 39 to 67 years. The time from their original diagnosis87ranged from 2 to 28 months. In the other workshop, the age range of the cancerpatients was 37 to 68 years and the time since their diagnosis ranged from 3 to 36months. One of the support persons in that workshop had been treated for breastcancer twelve years ago and is well. None of the participants were interviewedbut several completed a post-workshop survey.All the participants were viewed as a set of unique cancer patients andsupport persons. On the basis of their decision to become members of a self-helpgroup (HOPE) they may have characteristics that are different from the generalpopulation.Participant SelectionIt is common in case study design, when the purpose is to explore aphenomenon in depth, to purposefully select the participants for the contributionthey can make to the study. “Reputational-cases” are one kind of a “purposefulsample” according to McMillan and Schumacher (1989, p. 397). Therefore, for theinterviews, members that were reputed by others to be learners or thatvolunteered because of their interest in HOPE were chosen as “participants.” Theleaders of HOPE were consulted in the selection process. In activities where Iassumed a role of participant observer, the participants were considered to be selfselected through their attendance at the event.88Methods of Data CollectionTechniques used for the collection of data were those common to qualitativeresearch: participant observation at the site, in-depth interviews with selectedmembers of the group, and review of documents and media material. Use of thisvariety of methods helped achieve a holistic view of HOPE, a view whichacknowledged the differences in the learning experiences of the members of HOPEand also acknowledged some similarities as a result of the contextual qualities ofHOPE. Learning experiences of the members are embedded in the context ofHOPE, and HOPE is embedded in a larger system of providers of care for cancerpatients.Each data collection method is discussed in more detaiLReview of Documents and Media MaterialsArticles, newsletters and media material such as videos and pamphletswere reviewed to discover the foundation of HOPE and its evolution over time.This material also provided some data on the purpose, the ideology and theactivities that are carried out. Personal testimonials of members were found inHOPE newsletters and magazine articles. The book My God, I Thought You’dDied, co-authored by Claude Dosdall (Dosdall & Broatch, 1986), was read.In-Depth Interview with the Remaining FounderMoyra White, the remaining co-founder and current director of HOPECancer Health Centre, was interviewed for data on the evolution and89characteristics of the organization and a perspective on becoming a leader of thegroup.In-Depth Interviews with Current StaffThe other two paid staff members were interviewed for their perspective onthe operation of the organization and more specifically for their perspective of thepurpose and the activities that are planned to achieve the purpose, facilitatelearning and maintain the organization. They were also asked to provide theirperspective on becoming involved as leaders at HOPE (see Interview Guide(Veterans), Appendix A).In-Depth Interviews with Selected LearnersEleven in-depth interviews with the participants purposefully selected fortheir interest in this topic and their reputation as active participants in HOPEwere carried out. This group included ten cancer patients and one support person.Semi-structured, open-ended questions were developed to guide the interviews (seeInterview Guide (Learners), Appendix A). All interviews were audiotaped andtranscribed for analysis. One audiotape did not transcribe well and most of thatmaterial was not useable.Participant ObservationI assumed the role of “participant observer” at two weekend workshops andat the office of HOPE on several different days. Because of the breadth of this90case study, it was advantageous to complete the data collection in a focused way.I could not attempt to capture everything that happened. Direction was take fromresearch literature regarding the usefulness of conceptual frameworks inqualitative research. It is suggested that theoretical concepts be identified earlyin the research so that “salient” observations could be made (McMfflan &Schumacher, 1989).Concepts used to characterize self-help groups, such as knowledge base andcomposition, were located in the literature on self-help groups and developed intoa framework which focused the collection of descriptive data about HOPE as aself-help group. Theoretical writings on experiential knowledge, transformativelearning and situated learning were chosen from the literature on adult learningas the lenses for observations and discussion related to the phenomenon of adultlearning in this context. Field notes were made during and following theworkshops.SurveyWorkshop participants who chose to completed a survey aimed atdetermining their expectations and satisfaction in relation to the workshop (seeWorkshop Participant Survey and Consent Form (Workshop Participant) and(Support Person), Appendix A).91My Own ExperienceMy own experiences as a member of this group and my knowledge of theactivities and inner workings were treated as valid data. This was most useful forthe design of the data collection tools and selection of the literature review. Datafrom the other sources was used for the description of HOPE and the learningexperiences of the members of HOPE.The role of the researcher in the qualitative approach to research is not oneof “objective” observer. The researcher is interactive in the research process and isas much a participant as an observer. The fact that I was a member of HOPE,and as such had some existing roles and responsibilities, could be viewed as alimitation in this study. Owens (1982) claims that in qualitative research validityis not achieved by objectivity brought about by methodology but through“personable, intimate understanding of phenomenon stressing ‘close in’observations” that result in data that are confirmable and reliable (p. 10). It isbelieved that my sharing of the experience of cancer and my longstandingmembership in this organization enhanced the dialogues with other members.During the data collection process I made a conscious effort to be open todiscovering the realities that were presented and to minimize the influence of myown experiences.Ethical ConsiderationsInitially, permission was granted by HOPE staff for me to attend twoweekend workshops and to interview some members. All of the members of92HOPE that were approached to participate were offered an explicit choiceregarding their participation in the study and they were assured that nonparticipation would in no way jeopardize their membership.The interview participants were given an option to remain anonymous or beidentified with their own name. This option was based on the followingassumptions. In an interview situation, relative control over the structuring ofmeaning rests with the interviewer. One way for members of a culture to retaincontrol or to “own” their ways of “naming the world” is through identification ofthemselves (lVlishler, 1990, p. 124). Some members chose to be named. Thenames of those who wished to remain anonymous have been changed. Only insome cases where the name is attached to a position (the leaders and the supportperson) can the difference be noticed. All three paid staff members and thesupport person consented to be identified. No distinction is made between the realnames and anonymous names of the other participants.All letters to participants, consent forms and interview schedules wereapproved by the staff of HOPE and the Behavioural Sciences Screening Committeefor Research Involving Human Subjects at the University of British Columbia.They are included in the report as Appendices.Analysis and Interpretation of the DataMcMillan and Schumacher speak of the “emergent design” of qualitativeresearch (1989, p. 179). The steps of selecting participants, collecting data andanalyzing data are expected to be circular and interactive rather than linear.93Researchers are meant to be sensitive to signals from the data of changes inemphasis as the research progresses and interpretations are made. It is believedthat simultaneous data collection and analysis increases the productivity andrelevancy of the data collection (Merriam, 1988a).Collection of the data was carried out according to the design. Twoadditional short interviews were held with the Director of HOPE, Moyra White.Analysis of the data involved a dynamic interplay between the data, the themesthat emerged and the conceptual frameworks used for interpretations. Thecollection and analysis of the data took six months.Unlike experimental research based on random samples, case study designdoes not intend to provide conclusions that can be generalized to all groups.Instead, data are collected to provide rich descriptions of the phenomena ofconcern. Conceptual frameworks were selected to focus and organize the data forthe purpose of providing greater understanding of a context-bound phenomenon, inthis case, HOPE Cancer Health Centre.In some case studies the descriptive data are used to illustrate, support orchallenge existing theoretical assumptions (Merriam, 1988a). This was notattempted in this study because clarification of the findings were first required.The data were refined and interpreted using selected concepts and propositionsfrom theoretical writings. First, the data describing HOPE as a self-help groupwere linked to the framework of characteristics on seff-help groups. Second, datafrom the participants on their experiences of learning were organized andinterpreted using the concepts and propositions from the literature on adultlearning.9495CHAPTER FIVEHOPE CANCER HEALTH CENTREHOPE Cancer Health Centre is a community based self-help organizationthat is believed to be unique in Canada because it was organized by cancerpatients and is still operated by cancer patients. This chapter begins with a briefpreview of HOPE. The rest of the chapter provides a more comprehensivedescription of HOPE Cancer Health Centre as a self-help group in the largercontext of care giving systems and as a “learning community” for its members.The descriptive data are organized in the framework of characteristics of self-helpgroups which was developed in the review of literature on self-help groups inChapter Three.HOPE Cancer Health Centre: PreviewHOPE Cancer Health Centre is a voluntary organization for helping cancerpatients. It grew out of a small group of people who came together to help eachother fight cancer. This section is a brief overview of HOPE and includesinformation about the origin, purpose, activities, maintenance and funding, andmembership of HOPE.OriginThe HOPE organization began in 1980 when some members of a smallsupport group realized they might be able to help other cancer patients by telling96them about the ways the members had helped themselves. They recognized thatthey had developed knowledge through their own experiences of fighting cancer.They had practiced self-help and were impressed by the power of self-help andgroup support and this encouraged them to assist others. They also wanted tohave a place where cancer patients could come to find help, to learn and to just be.For several years Claude Dosdall, the original leader, operated an office forHOPE in his home. His vision of a more accessible location for HOPEmaterialized in 1987 when they moved to the present “store front,” identified by alarge blue awning at 2574 West Broadway. From a beginning as a small supportgroup of terminally ill cancer patients, HOPE has successfully transformed itselfinto a community based organization with an educational focus.PurposesThe purposes of HOPE Cancer Health Centre have been formally defined inthe registration document for the B.C. Societies Act. They are:1. To provide hope for cancer patients.2. To provide a support network.3. To provide a forum for exchange of information about cancer.4. To encourage hope and positive attitudes as an aid to self healing.5. To encourage active participation by the patient in the process of gettingwell.6. To do whatever is necessary to aid the patient in dealing with cancer andregaining health.97ActivitiesIn order to achieve these purposes, a variety of activities and programs havebeen planned and carried out at HOPE. As in most charitable organizations, theactivities have changed over time, often depending on the resources of money andstaff. The following is a list of activities that have happened over the years atHOPE:• HOPE information evenings for prospective members.• Introductory workshops (evening sessions and weekend format).• Monthly meetings with speakers.• “Drop-in” and on-going support sessions.• Special focus education sessions (e.g. death and dying, self-esteem).• Special focus activity sessions (e.g. yoga, therapeutic touch, meditation).• Open office hours for “drop-in” contacts and telephone contact.• One to one counselling service.• Loaning of library books, audio and video tapes.• Production and circulation of a quarterly newsletter.Through these activities, the leaders of HOPE, to the best of their abilities,provide opportunities for cancer patients to learn about their disease, abouttreatments for their disease, and about ways they can involve themselves andparticipate in their recovery. The introductory workshop is the centraleducational program and attendance at an introductory workshop is the means toformal membership in this group.98Funding and MaintenanceMaintenance of the organization has been largely influenced by thededication of the leaders in overcoming two main hurdles. They began withoutsanction or support of other agencies of cancer care and have had to workcarefully to attain credibility in the community. Currently there is moreacceptance of their philosophy and many members are referred by health careprofessionals. The organization depends on word of mouth advertizing and doesnot attribute funding to formal advertizing. A film made by the KnowledgeNetwork in 1986 is still shown on community television channels and frequentlycancer patients contact HOPE after viewing it or after seeing or hearing one of theleaders discuss HOPE on a television program or radio talk show. The secondhurdle has been financial.The funding for the organization, which comes from several sources, is notconsistent. Currently there is a charge for the introductory workshop. In 1980the fee for the workshop was $35.00; it is now $385.00. A $135.00 subsidy madeby the Fraternal Order of Eagles reduces the cost to members to $250.00. This feepays for a support person to attend with the cancer patient. The fee can bewaived by HOPE for those unable to pay.Another large source of funding is donations and bequests from membersand members’ families. Several service clubs and social clubs connected to privateenterprises have made generous lump sum contributions, often targeted for capitalexpenditures such a furniture or office equipment. Recently, the “Face the World99Foundation” and the “John and Lotte Hecht Memorial Foundation” have madecommitments to contribute monies to HOPE.The leadership of HOPE has become more formalized over time. The threepart-time “leaders” currently receive remuneration. A office support person isemployed when funding is available. Volunteers help with office duties such asmail outs and phone lists. The operating budget of HOPE has varied dependingon the amount of funding received. Tn 1993, which was defined as a “trimmedback” year, it was $135,000.00. Planning is contingent on anticipated income;$250,000.00 is the target for 1994 (M. White, personal communication, March 24,1994).Only estimates of the numbers of members of HOPE are available becausekeeping membership statistics has not been a priority of the service-orientedorganization. Attendance at workshops ranges from 12 to 24 participants(including support persons) and from six to ten workshops are held each year. Itis estimated that around 2,000 cancer patients have been helped at HOPE since itbegan fourteen years ago. There are no records of the total number of members,living or deceased.It is known that the members of HOPE vary in several ways.Unfortunately complete records do not exist to provide specific data. It is knownthat more women than men join. Members range in age, in the seriousness oftheir prognosis and the length of time from their original diagnosis until the timethey join. Many members come after exhausting the available traditional100treatment regimes. Neither the socioeconomic level nor the education level ofmembers is recorded.HOPE as a Self-Help GroupA framework of distinguishing characteristics of self-help groups has beendeveloped out of the literature on self-help groups in Chapter Three. Thesecharacteristics can be used to describe and compare individual self-help groups(Borman, 1979; Levy, 1976; Powell, 1990) and to differentiate self-help groupsfrom other care giving systems: professional care and informal care (Checkoway,Chesler & Blum, 1990; Powell, 1990). The framework includes the followingcharacteristics: focal problem, purpose, source of help, knowledge base, basis ofpower, composition, inputs, origin and sanction, control, and organizational design.Each characteristic focuses a portion of the descriptive data.This comprehensive description is needed in order to fully understand thefunctioning of a particular self-help group, in this case HOPE Cancer HealthCentre. It is also a useful way to identify the uniqueness of each group.Focal ProblemThe focal problem of a self-help group is that area of human concern aroundwhich the activities are focused. People living with cancer have a number ofdifficulties. The physical, emotional and social manifestations of the disease arecompounded by the often devastating effects of the traditional treatments.101Maton (1989) suggests that the focal problem of self-help groups can bedescribed in terms of the degree of social network disruption and the degree ofrelated life stress. Use of these descriptors helps to differentiate self-help groups.Evidence that a diagnosis of cancer in our culture precipitates a high degree ofboth these symptoms was found in all sources of data. This is an example takenfrom the transcripts of Maggie’s interview:I think cancer is a very isolating disease. People sort of pussy foot aroundit and don’t really want to talk about it and even relatives and that. Well,it’s like with me, the word cancer just had that connotation of death, nomatter what. . . . Therefore [people] are afraid and they don’t really want totalk about it (V2, 184).Her words clearly illustrate the central problem experienced by most cancerpatients. Five themes emerged from the data that describe the focal problemwhich HOPE is organized to address. They are intensity of feelings, difficultyexpressing feelings, loss of control, lack of knowledge and limited resources.Intensity of FeelingsOne HOPE brochure states “A diagnosis of cancer fills one with feelings offear and isolation.” This statement was supported many times by theparticipants. Barbara spoke of the “sense of isolation and desperation that manyof us come with” (V3, 361). Shame and shock are other feelings described.Phyllis stated that a cancer diagnosis is “a shock because you don’t think it canhappen to you” (Lii, 24). Bridget stated “I was just--I guess, shocked--even thenpart of me was saying this isn’t true, this isn’t happening to me” (L2, 47).102Fear of death and fear of coping with the disease are both very real forcancer patients. An older woman expressed her own feelings in the context of herage:At my age the big thing in my mind wasn’t am I going to die--whereas it iswith someone in their forties. It’s always an issue but it wasn’t a big thingin my mind. It was the illness and how was I going to face it (Lii, 40).Glenda remembered telling a helpful social worker: “Listen, I know I look all rightand I know I feel okay and everything but during the day I put on this brave frontbut at night every time the lights go off, I lie there in bed awake all nightthinking, ‘I’m dying, I’m dying, I’m dying” (L9, 106). David stated that “At firstyou think, you know, cancer, it’s just, ah, it creates connotations and pictures ofeverybody dies from cancer sooner or later or maybe sooner so at first when Iheard the original diagnosis . . . I thought, ‘Well, I’m a goner,’ and left the doctor’soffice feeling that way” (L5, 164). It is apparent that feelings are deep and areproblematic for cancer patients especially in the early stages of diagnosis andtreatment.Feelings experienced when cancer growth recurs after treatment may beeven more devastating. After hearing that a biopsy revealed cancer, Alex relatedher reaction as “pretty devastating. I was shocked. Then, three years later . . . Ihad a recurrence, that was to my liver so that was a real blow, worse than theoriginal” (L3, 22). Phyllis also experienced a recurrence and stated: “I wasdamaged by that recurrence. I couldn’t believe it happened to me. A lot of womenfeel that way about the original diagnosis--not me. I felt that way when I got therecurrence; it wasn’t supposed to happen” (Lii, 175).103There are also difficult feelings related to the effects of cancer therapies.Julia, who underwent chemotherapy treatment, said this: “But the worst thing isthe hair loss. I don’t think I could bear that again. It’s such a distinguishingthing about being a cancer patient. I just think this is the hardest part” (L6, 105).Difficulty Expressing FeelingsCompounding the problem of having intense feelings of fear, isolation andshock is that cancer patients seem to have a hard time expressing their feelings.Some writers suggest that this tendency is a personality trait that many cancerpatients share (Borysenko, 1982; LeShan, 1977; Simonton, Matthews-Simonton &Creighton, 1978). Also contributing to the problem is an apparent difficulty in ourculture of speaking freely about cancer; for some reason there is stigma.Reflecting on her feelings after being diagnosed, Maggie stated: “There is thisidea, that, which I don’t know where it came from, that cancer somehow was, ah--what’s the word I’m looking for- -a shameful kind of condition that over the yearsit was hidden if somebody had cancer” (V3, 247). Jim stated: “At first when I wasdiagnosed, I was ashamed of the fact. I think I was ashamed, that’s all I can say.I didn’t want anybody to know I had this horrible disease” (L7, 76).In most cases family members and friends, although they try to be helpful,also have great difficulty dealing with the emotions. Bridget expressed this whendiscussing her need for support. “When I was at home, if I would express fears,[my husband] would, not try to shut me up and not negate what I was saying, butI think that he couldn’t, I mean he couldn’t deal with the fact that I might die”104(L2, 279). Jane said “My husband was a support in his own way but not the way Ineeded. He wouldn’t let me talk about it. He didn’t want to see me cry or talkabout it. He would discuss other things rather than it. But I needed someone totalk about it” (L8, 33). Barb P., who lives alone and has no family in Vancouver,said:I didn’t know who to talk to. I didn’t want to talk to anyone at work aboutit and they were sort of starting to wonder why I was taking so much sicktime off but I only told a couple of close colleagues. Then when I startedloosing my hair with my chemotherapy and I bad to start. Because I wentto work during my chemotherapy. But I guess the two would be fear andthe aloneness: the two big emotions that I felt (L4, 53).Sense of Loss of ControlAnother theme expressed in the interviews was a great sense of loss ofcontrol as the participants manoeuvred within a medical system that focuses onphysical cure and is mostly delivered in an authoritarian or paternalistic style.Glenda’s first request for support focused on this feeling. She recalled to meher statement to a social worker at G.F. Strong Rehabilitation Centre. “I said, ‘Ican’t go on like this.’ I said, ‘I just hate it. I feel helpless. Everything is beingdone to me and I can’t do anything for myself. I am on medication, I am on painpills. I just hate this” (L9, 109).Lack of KnowledgeOne cause for feelings of loss of control is a lack of prior knowledge aboutspecific cancers and their treatment. Knowledge is necessary for full participation105in decisions related to the treatments and care, yet cancer patients may remainexposed only to information provided by the medical care system. They often donot know that additional information is available. Further they may not be awareof where to get more information and sometimes are discouraged from doing so.This theme was also expressed in the interviews. Jane stated: “I was in thehospital two days later and had a mastectomy. At that time I didn’t questionanything because I didn’t know any better. I didn’t know what questions to ask oranything. I just wanted it off’ (L8, 13). She continued to say that during herchemotherapy treatments, “I started getting very, very depressed during thattime. I think it was because I didn’t know what questions to ask or anything” (L8,27).In my own search for knowledge in 1988 about the kind of breast cancerthat I was diagnosed with, I experienced a challenge finding literature in thelibrary at the Cancer Agency. Initially I was told by the Cancer Agency librarianthat the service is provided only for the professionals in the agency. After Iexplained to him my interest and how I had not found anything at the universitylibrary, he agreed, with some hesitation, to make an exception and do a computerbased literature search for me. At the time I wondered if other patients would beas persistent in their searches.In is worth noting that access to information has improved. Since 1991 thelibrary at the Cancer Agency has had a computer with the Medline CD Romdatabase available to patients as well as staff (B. Morrison, personalcommunication, April 4, 1994).106Limited Resources and OptionsLimited resources compound the problems of difficulty sharing feelings andfinding information. For instance, the large number of cancer patients treatedeach year at the Cancer Agency results in overtaxed resources. Maggie expressedthe problem:Well, it may just be the sheer numbers of people who are diagnosed withcancer and the legitimate orthodox agencies are having trouble dealing withthem. Because they are just overbooked and there isn’t the time to spendwith people and there definitely needs to be some better way of dealing withpeople when they are diagnosed particularly if there is not much that canbe done medically. It is really scary (V2, 131).Of great significance to cancer patients is the fact that there are alsolimitations to the numbers and kinds of medical treatments available. A diagnosisof “terminal” is a signal that the current treatment regimes are not effective forthat particular kind of cancer and its stage of development. The problem of beinglabelled “terminal” by professionals within the medical system is that it is “builton the assumption that illnesses can be treated by time-limited, episodicinterventions that have a definitive effect” (Levine, 1988, p. 168) and peoplebecome conditioned to think that only a physical cure will help. Patients arerarely encouraged to seek other means of healing or told of ways they can helpthemselves. Yet, it is evident that some persons become seekers after receivingthis diagnosis. Marilyn told me “I had a lot of treatment and nothing seemed tobe working. That’s when I joined HOPE” (Li, 19). Moyra related her situationprior to joining HOPE:Chemotherapy wasn’t working for me and most of the people that came tothe first group [of HOPE] were all considered terminal and there really107weren’t a lot of treatment options left. There was palliative care. So it wasmore like, it was like trying to go beyond it and to be told that there wasnothing that could be done. I know personally for me, it was verydemoralizing. So I don’t think HOPE would have been founded if weresponded well to medical treatments (Vi, 24).She continued to say: “There were a lot of people willing to support us in dyingbut no one that was willing to support us in staying alive. So, that is why we hadto do it ourselves” (Vi, 40). The founders of HOPE, described as “alone andafraid,” searched for support in the community but found no one willing to helpthem. They then formed their own self-help group.PurposeHOPE’s newsletter, which is published bimonthly, carries the logo “HOPE:Fighting Cancer.” “Staying Alive” is the title of the introductory workshop offeredby HOPE for cancer patients and their support persons. The advertising brochurefor the workshop suggests that “through this workshop participants will gainexperience, insight and information to help them deal effectively with cancer on apersonal level.” It further states that “After years of operation HOPE is able tooffer help and encouragement to all cancer patients who wish to take an activepart in their cancer treatment and recovery process.”These purposes of helping and encouraging cancer patients to dealeffectively with cancer on a personal level are identffied in written materials andare supported by interview material from HOPE leaders and participants inHOPE.108The data emerged in response to interview questions about the mission ofHOPE and also about the benefits for members. The two objectives that appear tobe related to the purposes are to stay alive by fighting cancer and to improve thequality of life for cancer patients.Fighting Cancer and Staying AliveMoyra, the current Director of HOPE and the sole remaining foundingmember, recounts the early stages of HOPE and how the members turned to eachother for support in what they all viewed as a singular challenge- -wanting to stayalive. Moyra recalled that:At the beginning it was more for mutual support with the idea that peoplethat believed in the same thing as we did, which was trying to stay alivewith cancer, and it would be easier to talk amongst ourselves, that weneeded support, we needed somebody else to believe in it (VI, 5).These people continued to meet and they named themselves HOPE. As ananagram it stands for “Helping Ourselves Psychologically Everyday” but as theorganization has been called the HOPE Cancer Health Centre for some time, theHOPE part does not get translated as often. There is a lot of evidence for the factthat the term HOPE has a great deal of meaning in itseff. It was a frequentlyexpressed outcome and appears to replace the despair commonly felt by memberswhen they first come to HOPE.Eventually sessions for new members were developed on the basis of theexperience of the founding members and their own success with prolonging theirlives. Although the number is not known, there are several members who are109living examples of the benefits of belonging to HOPE for the purpose of stayingalive. Moyra is alive and cancer free after being told in 1980 that her cancer hadspread to her lungs and there were no available treatments. The participants forinterviews were selectively chosen for their reputation as successful learners andcancer survivors. Barbara, Maggie, Alex, Bridget, Phyffis, David, Glenda, Barb P.,Jim, Jane, Julia and myself all have “clear” reports. It was also known that thereare people who are still alive but no longer participate in HOPE activities.Maggie stated:We haven’t kept a record, . . . I think there are many people alive today andthey pop up periodically. We had one woman come in not long ago who saidshe had been given up on. This is before my time, which is about 8 yearsago. And here she was hale and hearty and if it hadn’t been for HOPE, youknow she wouldn’t have done that (V2, 93).All made changes in their lifestyle and in their lives and attribute at least some ofthe changes to their participation in HOPE. Bridget stated “It has made adifference in as much as I am here five years post diagnosis and in remission, Imean recurrence free. And it is a good feeling for me to think that I participatedin that” (L2, 524). Marilyn reflected: “Well, my health turned around and I didn’tknow exactly what changed it but I wasn’t about to let go of anything that mightbe keeping me well so HOPE was part of it” (Li, 252).It is also known that many participants sooner or later die from theircancer disease. Many come to HOPE as a last resort at a time when their canceris already very advanced and their energy is diminished. Claude Dosdall, one ofthe founders and the Director of HOPE for twelve years, died in August, 1993,fifteen years after his diagnosis of a brain tumour.110Improved Quality of LifeIn his book, Claude wrote about being discouraged about the numbers ofparticipants that came late in the progression of their disease and soon after died.He stated: “Every time someone died I went through this agony of doubt. FinallyI decided that in the HOPE groups I should also focus on improving the quality oflife as well as on prolonging it. Over the years we have had wonderful feedbackfrom people, relatives, and friends, who have assured us it is a worthwhile goaland that we are succeeding” (Dosdall & Broatch, 1986, p. 91). In speaking of herdeceased husband, Avril said: “He really believed that almost to the end, youknow, the things he learned at the weekend workshop could help him and itcertainly improved the quality of his life” (L10, 302). A rather special testamentto the success of HOPE in improving the quality of people’s lives was the largenumber of relatives of deceased cancer patients at Claude’s funeral.When recounting successes of this organization, Maggie focuses on bothobjectives: “The successes are that there are still people alive who would not havebeen alive had HOPE not been here. The successes, even for a brief period oftime, we have helped people to cope with the disease in a better way” (V2, 85).These statements help put into perspective the overall thrust of HOPE CancerHealth Centre as a self-help organization. Levine (1988) has identified the twocentral purposes of self-help groups to be assistance to individuals to cope withdifficult life circumstances and social activism usually focused on changing thepublic definition of certain conditions viewed as deviant. The above data providesolid support for the first purpose. Although there is evidence of advocacy forillcancer patients, it cannot be said that HOPE has social activism as a centralpurpose.In order to achieve its purposes HOPE established both programs and aplace in the community. Moyra considers both these aspects to be significant: “Tohave people with cancer have some assistance and support and a safe caring placeto be, I think could make the difference between extending their lives or themdying in despair” (Vi, 483). An actual physical location is also viewed asimportant.Safe Comfortable PlaceMoyra reflected:There was only a handful of us and we needed a place where we could talkhonestly and openly about what was happening. To provide a forum or asafe place to talk about our beliefs and the belief of extending or trying tostay alive when we had cancer, considering we were all terminal at the time(Vi, 12).Moyra believes this is still true. She also said, “And I think it might give peoplewith cancer a place of their own, because there isn’t anywhere to go. There is noAA or halfway house or club” (Vi, 606). She provided a current example of “a ladywho last week told me things about having cancer that she had never told anyoneelse before because she felt that ease. That, in fact, we ended up killing ourselveslaughing over some of the things she has done” (Vi, 598).The significance of having a location where people can go to was highlightedby participants as well. When asked at the end of the interview for any otherimportant information, Bridget replied: “I guess what’s important to me--I may112have felt the need for it only once--that HOPE is a safe place that you could cometo, no matter what or when or why” (L2, 688).This location also provides space for the activities of HOPE which aredesigned to help achieve the purposes. Barbara mused about the opportunitiesthat are provided.Well, that opportunity to connect with others, . . . to know that you are notalone in it, that you can benefit from other& experiences. That it isinherently useful and helpful to talk, to tell your story, to talk about what ishappening. To become more informed about cancer, and about yourparticular cancer. To know that you have access to a lot of information thatyou might need, both traditional approaches and alternative approaches. Sothat, those are all benefits that people seem to be able to recognize right atthe beginning. Once they have been through the workshop and time goeson the contact develops. It is also, I think, the additional benefit ofbeginning to learn more about oneself and that opportunity to grow a littlebit more; to come to grips with one’s mortality; to look at our spiritualnature, our spiritual needs (V3, 220).The purposes of HOPE are underpinned by beliefs about the value of cancerpatients becoming participants in the healing process by helping themselves.Study of the beliefs that formulate the programs and activities developed byHOPE Cancer Health Centre will be presented in the later section “KnowledgeBase.” The next section focuses on the source of help which is the membersthemselves.Source of HelpA distinctive feature of self-help groups is that the source of help is thegroup members themselves. Members are attracted to self-help groups on thebasis of identification as peers and a feeling of oneness and mutual assistance113which is possible because of the similarity of their experiences. These experiencesare with the problem itself and ways of dealing with it. Compared to professionalhelp where the focus of concern is on the client and help usually moves in onedirection, self-help groups imply a reciprocity. In the give and take of sharing, themembers are both receivers and givers. Concern by some professionals that self-help groups emerge as a substitute for professional help in a climate of scarceresources has been countered by the view that the knowledge base has a differentand valuable quality (Borkman, 1976; Powell, 1990) and the fact that membersreceive benefits from participating in both roles: the role of participant and therole of provider (Riessman, 1965).Mutual AssistanceConcrete benefits accrue from receiving help from peers through knowledgeand information that is grounded in experience. Benefits also result from thepositive feelings of having one’s own experience validated by hearing about otherswith the same experiences. Barbara spoke of the benefits of mutual assistance bypeers, meaning those who have certain experiences in common:It really eases that sense of isolation and desperation that many of us comewith. When they hear somebody else’s experience, they can identify withthem and that is helpful in easing that sense of isolation and desperationthat they often come with. . . to know that you are not alone, that you canbenefit from others’ experiences (V3, 362).These sentiments were also expressed by workshop participants. Recalling hisexperience in the workshop, David said “I was so excited that there were otherpeople who had experienced the same things as me, whereas you always think you114are the only one” (L5, 141). Other more recent workshop participants describedwhat they liked best about the workshop as “free flow of information and thecamaraderie,” “sharing of experiences,” “meeting others in the same situation,”“comradeship,” “the warm feeling of sharing experiences, thoughts and emotionsopenly” and “being in a group where we had experiences in common.” It wasespecially moving to hear one gentleman say: “This is the first time we havespoken with others about cancer.”Evidence of receiving help about treatments or other ways of dealing withcancer was significant. Many global statements were made about membership inHOPE, such as “it turned my life around,” and many statements referred tospecifics such as “help with visualization,” “information about diets” and“encouragement to seek more information about my cancer.” There were alsoexamples of specific help from other members. Bridget talked about attending theintroductory workshop:Through HOPE I learned of a naturopath. . . that one of the otherparticipants in the workshop had been to, who was a lymphoma patient. Infact he was really toxic after his chemotherapy, . . . The treatment almostkilled him, even if the disease didn’t. So he was really, really toxic and hewent to this naturopath and he said he came out feeling fantastic after hehad gone through the detox[iflcation}. So that was what I did after going toHOPE (L2, 171).In self-help groups the aspect of mutual aid that includes responsibility for othersas well as for yourseff is called reciprocity (Powell, 1990). This “give and take”aspect creates a third benefit for members in self-help groups: the satisfaction ofcontributing to someone else’s knowledge and to their good feelings. Thisphenomenon was first identified by Riessman as “helper therapy” (1965). Bridget115talked about being in the group: “You have a feel for what somebody is goingthrough. And also, you come and you share your feelings with the group membersbut you are also there for them and so that is the giving and the taking of thatrelationship” (L2, 598).LeadersBorkman (1976) posited that the more experienced members of groups,those that have participated for a period of time and have a greater amount ofexperiential knowledge, become recognized as oldtimers or as veterans. It isusually these individuals that provide leadership to the group. This is true atHOPE even though Claude and Moyra began leading workshops less than a yearafter they formed the support group. The other staff positions are filled by non-founding veterans, Maggie and Barbara, and other veterans help in a volunteercapacity.Factors other than length of time in the organization also influencetransition to leadership positions. Confidence in their knowledge base is identifiedas one of these factors. This could be related to their experiencing and learningover a longer period of time but is also related to success in dealing with cancerand to developing knowledge about assisting people. Moyra said “Because of ourexperience over the years, I feel we now can provide, ah, a lot of direction,leadership” (Vi, 107). Moyra was the only leader to express a sense of her role asbeing quite different than it had been. She related this:116But it is certainly not the same for me as it used to be. I don’t feel that Ican tell people that come in the same things I would tell them years ago, Idon’t feel that they are here to hear what I have to say in the sense of myown personal stuff. They are here to get some guidance and some advice asto how to handle cancer. So it has changed a lot in that sense, though as Imentioned before, it is to learn from people but it is not the same kind oflearning. I no longer feel like a peer in the sense, even though I have hadcancer I don’t feel that I am on the same level as someone who has justbeen diagnosed and that is not meant to say I’m better or worse it is justthat I feel that I have developed skills to assist people whereas before, itwas very sort of a mutual exchange and I feel a lot more different about myposition and the way I interact with people (Vi, 127).The actual teachings of HOPE are called the knowledge base and will be exploredin the next section.Leadership can be encouraged through the attraction of members tooldtimers who appear to be confident in their knowledge. Maggie states: “BecauseI believe so strongly and I am so enthusiastic about it; therefore people look to methen for help, so it just sort of happens” (V2, 493).Another factor influencing movement to leadership positions is a desire tobe of more help. Some examples of the benefits of helping have been presented.Marilyn, who has been a member of HOPE for over four years, is in the process ofchanging her role. She stated: “I am helping out and I would like to do more of aleadership role because I feel I can share and I have time now and I want to bedoing something positive and constructive with my life, not just keep myself busy”(Vi, 245).Commitment to maintenance of the organization is another motivatingfactor. Because of the need for leaders to maintain the organization, this isdiscussed in the section on inputs.117Although all the leaders state that the work is difficult and emotionallydraining at times, they express direct benefits of helping as well. Maggie said:I think it keeps me on my toes. I think it keeps me enforcing myself someof the things that I need to work on. And also from a, just a personal goalspoint of view, I mean, I like what I do. I feel good at being able to helppeople. For me there are benefits (V2, 588).And Moyra said: “It is still a ‘selfisht thing that I am doing in some ways. So it isstill fulfilling my mission if you want to call it that. It is still helping me and it isstill helping other people find something that they can do” (Vi, 68). Furtherreflection revealed: “I am realizing too that, urn, to have confidence in myself andto believe and use my own ideas before other people as being very, veryexhilarating” (Vi, 499).One commonality in the experience of the current leaders is a slowtransition toward leadership, where tasks were assumed over a period of time andencouragement was a recognizable ingredient in the process. Barbara said this:I guess it was the encouragement of Claude and Moyra and I think they didit well--smartly and very wisely--by simply inviting me to sit in on theworkshops as, just a backup, just to tell my own story and gradually I reallyliked it too. And gradually become more confident and took more part,more active parts in the workshops as time went on (V3, 143).It could be assumed that the majority of helping is done by the leaders butthe leaders maintain the view that there is strength in the members and that thecontribution of all members is important and critical to the success of the group.Barbara said: “Everyone who comes to a workshop is a teacher as well. We try toexplain that to them when they come through, that people come not just to learnsomething but also to teach something, to share their own experiences” (V3, 351).118More specific examination of the content of what is shared and espoused byHOPE Cancer Health Centre is discussed in the next section.Knowledge BaseAntze (1976) suggests that the specialized teachings of the group are basedon the developed wisdom about the focal problem; he refers to this as the ideologyof the self-help group. This body of wisdom has also been designated experientialknowledge (Borkman, 1976, 1984, 1990; Powell, 1990). The experiential qualitydifferentiates it from professional knowledge and lay knowledge and is based onthe element of “personal participation in a phenomenon” and the attitude that“what one experiences does indeed become knowledge” (Borkman, 1976, p. 447).Prior to the data collection, the depth to which the ideology of HOPE CancerHealth Centre could be identified as “based on experiential knowledge” was notevident. It is now apparent that the teachings of HOPE are experience based.The focus of this section is the content of the knowledge that collectivelycould be called the ideology or teachings of the organization. These teachings areintegral to the learning experiences of the members of HOPE, which are the focusof Chapter Six. The members developed the ideology and continually inform itthrough their personal experiences.Knowledge of Cancer Care and RecoveryAs an introduction to this section, a statement from Claude’s bookdemonstrates both the conviction with which members hold experiential119knowledge and also some of the content of the knowledge base that is the basis ofHOPE’s teachings. He stated:I know that knowing myself is the best insurance program for getting welland staying well.I know now that I have a personal power that I never before realized.I know that I can rely on my own judgment more than I ever thought.I know that confronting anything makes it less frightening.I know that positive thinking in many cancer patients is only pretendingthat everything is fine.I know that wishes are useless.I know that cancer demanded that I change my life or die.I know that humor is important to survival.I know that we are all connected to some higher power.I know that what I believe is what I am.I know that the first step in knowing is knowing that you don’t know.And much, much more (Dosdall & Broatch, 1986, p. 6).Claude recognized the experiential nature of his knowledge, as is demonstrated inthis passage from the same book.I have come to know the incredible power with which the mind caninfluence the body. My personal experience has taught me aboutpsychoneuroimmunology. My psyche and emotional self directly impact onmy brain and my nervous system and in turn my brain gives messages tomy immune system. My immune system keeps me well when it functionswell and leaves my body vulnerable to disease when it doesn’t (Dosdall &Broatch, 1986, p. 5).Moyra displays confidence in her own experiential knowledge in this statement: “Ithink that perhaps people should realize that experience is just as valid as goingto school in a sense. And if there is no school to go to that perhaps what we haveformed is a place where people can come and learn from us” (Vi, 299).The experiential knowledge of the founders and the members has becomethe collective wisdom of HOPE. As the basis of the teachings of HOPE, it is alsoreferred to as the ideology of the group. Certain themes emerged from the data120related to this knowledge base that are interrelated. Some of the themes areidentified in Moyra’s comment to a group of new members at a workshop:“Actively fight if you are to stay alive. Use your own resources, be alive, want tolive, come together to share feelings, especially fears, . . . put faith in yourselves”(M. White, personal communication, October 1, 1993). The beliefs are organizedunder the following themes: choose to be alive, know yourself, help yourse]f self-help techniques, get information and know resources and be human. Collectivelythe ideology could be expressed as “self as active participant in healing.”Choose to Be AliveIt is believed that in order to actively participate in healing it is necessaryto consciously choose to be alive. Otherwise people may not make the necessaryeffort. David expressed it this way: “Because if you don’t want to live or you don’tfeel that you have got something more to do then maybe you can get into that rutof giving up or whatever” (L5, 238). When asked about important learnings atHOPE, one of the items listed by Maggie was: “Learn to live, and I believe, likeBernie Siegel says, it is a question of learning to live, not trying to not to die. Andin that process, if you lived as well as you can for however long you have left, thenit’s okay” (V2, 319).Claude explained that not wanting to die is a passive rather than activestate and so it is important to discover one’s purpose in life. Thereforeparticipants in the workshops are challenged to think about their purpose in lifeand to examine their deepest feelings about life and death. Maggie suggests this121exploration needs to include the question “do I really want to live?” because somepeople in the workshops discover that they do not have a strong purpose or desireto live. She also believes people can make an informed choice: “It has to be aninformed choice and I feel everybody has to have that knowledge and then, makethe decision: ‘It is too difficult for me,’ or ‘Oh, no, I don’t want to do it,’ orwhatever. That is their choice” (V3, 313). Quality of life is stressed and it isbelieved that making a choice to be alive supports quality of life.Know YourselfCausation of cancer is known to be multifactorial. It is believed that notenough emphasis has been place on emotional, social and spiritual factors inconsideration of the etiology. Therefore, examination of the self along withenvironmental factors is suggested and this requires examination of the cognitive,emotional and spiritual dimensions. Barbara states “Well our focus is apsychological and emotional one, to look at what that means. It is a holisticapproach. . . . We think it is important that people do that [examination]” (V3, 64).Learners talked about this inner examination. Jane said:I had to re-evaluate my life just like they say. I had to take a look at mylife. There was stress there, . . . So really going to HOPE made me sit upand realize what these people are doing for themselves and as you say youtake a look at yourself and what is happening there (L8, 85,125).David said:I think the whole process of self examination came from HOPE. . . I had noclue that what was happening to me was somehow detrimental or that Ishould take a step back and have a look at it and say analyze it a little bitmore and no clue what I was doing and then all of a sudden when the122cancer happened that is exactly what I did is I had a look and “Holysmokes!” I was in trouble there (L5, 650).Some health care professionals criticize this kind of self-examination, sayingit puts too much onus on the patient and leads to self-blame. Moyra stated:I think some people think you are asking them to do too much and that allthe onus is on them. I don’t feel it is. I think ultimately it is, but I thinkas far as blame goes, I really disagree with that. We try, at least, I’mtrying to not blame people (Vi, 636).The notion that individuals can take responsibility is a concept that is meant to beapplied in the present and the future and recrimination over past events isdiscouraged. The self-examination is meant to provide insight and some ideas forsome changes that might be helpful. I myself have struggled with self-blame andhave been gently discouraged from dwelling in that mode.Members are encouraged to find means of accessing inner information bywriting journals, practicing meditation or watching their dreams. Consultationswith psychologists or psychiatrists are also recommended as adjunctive help forboth knowing oneself and for strengthening personal resources.Help YourselfIt is believed that shifting from the mode of being a patient or “victim” intoa mode of helping yourself is necessary to mobilize resources for healing. The selfhelp position is viewed as a position of strength or empowerment. Claude quotesKenneth Pelletier in saying: “when the hopeless-helpless cycle is altered, there is achance to engage in self-healing” (Dosdall & Broatch, 1986, p. 25). Moyradiscussed this aspect of healing and said:123I also feel that I wouldn’t be alive if I hadn’t taken myself out of thatpatient [victim] mode. . . . The people who really learn what self-help is takethemselves out of being a sick person and they start realizing that theyneed to form another image of themselves, another persona (Vi, 325, 378).Barbara states “the mission is to help people with cancer to empower themselvesto take part in their own healing process, and that we as a group can help them”(V3, 13). Maggie said this:What we try to foster is taking charge ourselves no matter whether it isdeciding what treatment we will accept or not, what vitamins we will takeor not, whether we will change our diet or whatever. We accept and makethose decisions, it is empowering so therefore you don’t have that kind of“poor me,” victim syndrome (V2, 197).Moyra states the workshops are a motivating force but the self-help mode has tobe continued outside the group. She states the goal is:To motivate people to help themselves and to continue to do so. I see it as amotivation force for people, not sort of the end of the line. For people likeyou just don’t come here and do the stuff, you come here to be motivatedand then because it is self-help then it is up to you to do and to seek outother ways of doing it. You might get the ideas here but you are still goingto have to go to other places (Vi, 186).Maggie stated that “most people when they finish the workshop they have thatsense of purpose. ‘Yes, okay I’ve got this to use, this is what I can do” (V2, 236).Maggie mentioned that there is a danger too. She said:I mean I recognize that people might have a sense of failure they can’t do it.So we try not to say that. We try to say it is a question of doing certainthings that may influence the course of your disease and can make adifference in your disease but that there are other factors that we don’tknow about (V2, 784).The majority of “things to do” could be classed as self-help techniques. Itcould be argued that these techniques were not developed by HOPE; thereforethey should not be considered knowledge that is experientially based. It is firmly124believed that the knowledge of the techniques becomes experiential and that thisis the basis of the learning in the group. The members use the techniques andthen can speak from experience when telling about them. They can makeknowledgable statements about benefits of using the techniques.Self-Help “Techniques”Several self-help techniques are presented in the introductory workshops.The following topics are listed in a brochure that advertises the workshops:Visualization as it applies to cancerStress and cancerRole of the support personEffective communication for health professionals and patientsRelationships and family dynamicsDiet and exerciseEmotions and their role in disease and recoveryPreventionMeditation, visualization and positive thinking are all related activities that arebased on the same concept: activities of the mind have a direct impact on theinternal workings of the body. Maggie emphasizes, as most important, learningabout the mind/body connection.Well, the biggest one of course is learning that you have some control overthe disease perhaps. I shouldn’t say perhaps because I do believe you do.Learning there is a connection between the mind and the body, . .psychological health and the physical body. Because most of us havedivorced that (V2, 219).When asked to describe the beliefs of HOPE, Phyffis said this: “The belief thateverybody can help themselves. Some to a much greater extent than others butthere is help inside of each person if they want to reach in and get it” (Vii, 131).125Bridget said “We have capabilities within us. . . . Here the belief is that we havethat power” (L2, 307).The visualization techniques that were first described by Carl Simontonsuggest positive results from picturing in the mind an activity that representsdestruction of the cancer cells. Barb P. practiced this. “When I was having myradiation I would lie on the table getting my radiation and I would just envisionthose radiation rays just going in and just getting rid of that tumour and I wasreally positive” (V4, 316). Other forms of visualization are used to achieve deepstates of relaxation thought to be conducive to mobilizing the body’s healingenergies. A similar “mind” technique is that of positive thinking.Positive attitudeOne session of an introductory workshop was devoted to discussion focusedon “What do you believe positive thinking is?” A point of contention appeared to bea popular misconception that if you just put the cancer out of your mind and think“good” thoughts you will be cured. Moyra states: “It is not about pretending thateverything is fine when you are very sick and hurting.” Maggie says:Well, I believe, yes, that a positive attitude is necessary but it has to comefrom something inside that you believe that you can do that makes you feelpositive. I mean there is no good someone saying to you that you have gotto be positive. How can you be positive when you are scared stiff and youare thinking this thing is growing or whatever (V2, 262).Glenda believes that what worked for her was to emphasize the positive side of anevent rather than the negative. She said:126The HOPE centre is definitely about positive attitude and teaching you toturn your negatives into positives. . . . My kid is a straight A student and Iknow why. Maybe he wouldn’t have been if I hadn’t taken the HOPE[course] where it is positive self-talk, where ‘Gee, you got 14 right’ insteadof ‘2 wrong.’ It is just learning to focus on the positive (L9, 184).Exyression of emotionsThe holding-in of emotions is believed to cause harm to the body and createan atmosphere for cancer to grow. Persons usually have most difficulty expressinganger and disappointment, emotions often associated with the experience ofcancer. An information brochure about introductory workshops states: “Peoplewho learn to deal effectively with these emotions have a better chance of survival.”Maggie states: “So what they learn to do is to talk openly about what they arefeeling first of all and whether that be anger or resentment or sadness or fear orwhatever” (V2, 179). Barbara said: “It is inherently useful and helpful to talk, totell your story, to talk about what is happening” (V3, 222).Support as an important adjunct to self-help has been mentioned severaltimes and it reflects the beginnings of HOPE and the need the members felt forhaving understanding and support for their ideas. To expand the cancer patients’circle of support, spouses or close friends are invited to the workshops. Maggiestated: “That is why we have the support people come to the workshop because ithas to be communication between the two” (V2, 253). Marilyn discussed theimportance of having her husband attend the workshop.My husband participated with me at the group and this was absolutelyessential because he now has an understanding of it. He was not intopsychology, . . . I get continual encouragement from him to keep doing my127meditation and great encouragement to go to my support group. I feelwithout him going to the workshop, he wouldn’t have the understandinghow important it is to me (Li, 102).Know and Use ResourcesKnowing and using resources is an important aspect of “being in control”and another concrete way of supporting the notion of being actively involved inhealing. Barbara states that getting information is an important goal: “To becomemore informed about cancer, and about your particular cancer. To know that youhave access to a lot of information that you might need, both traditionalapproaches and alternative approaches” (V3, 220). The information is needed tobe able to participate in decisions related to treatments. In reference to thesedecisions, Claude explained: “I had to know as much as possible because I believethat those who want to take control over their own health and lives must knowthe facts” (Dosdall & Broatch, 1986, p. 74).In talking about the early mission Maggie said: “Their role was toencourage people to, not to necessarily not take medical treatment but to look tosee what they could do in addition to it--taking medical treatment was notenough” (V2, 28). Moyra confirmed this view.People also believed that we were encouraging people not to take thetreatments which wasn’t true, we were encouraging people to look at thetreatments and be sensible about them and also realize that perhaps therewere more resources beyond what our cancer society could offer (Vi, 97).The members reported benefits from pursuing information sources. Davidsaid this: “What I learned is that, typically the type of tumour I had doesn’t128spread from the brain. It stays there. So I was kind of confident that mine wasn’tgoing anywhere, was staying there and I could beat it where it was and I wouldn’thave it” (L5, 292). Barb P. claimed that she learned a lot, “especially about newage medicine” which she always thought “was ‘hippy’ type,” says that her goal now“is to educate people about what I learned in my experience” (L4, 371). Shestates: “They may not have the same experience and may not respond the sameway but I feel that they should know what is out there and let them decide if theywant to try” (L4, 374).Being HumanAlthough not explicitly said, being “human” seems to be an umbrella for thebelief that it is healthy to recognize the negative feelings that accompany cancerand at the same time it is health promoting to enjoy as much as possible in life.There is a normality about the fears, about the tendency to feel ashamed of havingcancer and about the despair that accompanies a diagnosis of cancer. It alsoincludes permission to be cheerful and have fun. Moyra said: “It is perfectlypermissible to have a good time though you may be ‘dying’ or very sick” (Vi, 632).These beliefs about cancer care and recovery become the knowledge base ofHOPE. As such they are the body of the teachings to which new members areintroduced. This system of beliefs is called the group’s ideology and can besummarized as “self as participant in healing.” The ideology is central to thelearning experiences of the members of HOPE. Different forms of learning, suchas integrating the central beliefs and extending learning within the frame of the129beliefs, are all related to the ideology.There is also a set of beliefs that relate to the ways that the members areassisted and define the roles of the leaders.Assisting Peoiile with CancerWhile the main body of knowledge used by HOPE in the teachings isfocused on dealing with cancer, the leaders all acknowledged some expertise inhelping people. In other words, the process of helping other members learnbecame an area of interest for the leaders and they say that over the years theyhave accumulated knowledge in this area.All the leaders commented on their learning about helping other cancerpatients. Moyra said: “I feel we can now provide, ah, a lot of direction, leadership.And observing people over the years and observing what works and what doesn’twork, we have been able to put a program together which we didn’t have before”(Vi, 292). Maggie spoke of her improved communication skills; Barbaramentioned “a growing expertise, . . . We learned more about communicating withpeople in groups” (V3, 30). When asked where they have gained this expertise,Barbara said: “Well, a lot through experience of working with people, with selfeducation and with courses as well: taking courses and workshops. . . . and takingpart in a lot of the research as it developed” (V3, 37). She cites the growingexpertise of the public as a reason to become more knowledgeable and “come up totheir expectations as well” (V3, 46). Even with training, their own experience in130healing is what is highly valued. Moyra said: “I think to become a veteran self-helper you have to have really helped yourself’ (Vi, 341).Value of SharingThere is a high value placed on the activity of sharing. It is hoped that theprocess of learning from each other in the group and getting messages of lookingat their own lives will be motivating. Maggie said “That from their ownexperience of what had helped them to stay alive that they could seecommonalities, that people could look at and see if they applied to them and seehow we could change so people could try something” (V2, 20). The leaders telltheir own stories to help stimulate sharing within the group. Moyra openly says:“I made a lot of mistakes and had a lot of difficulties. It helps people to hear thatand I think perhaps my willingness to tell about some of the things that havebeen very hard in my life helps put the other person at ease and does make themon the same level as a peer” (Vi, 404).Sgie “Normalizing” MilieuNew participants said they enjoyed the “camaraderie,” and said theatmosphere was “relaxed and very human, very safe.” Words such as “caring,”“open,” “warm,” “interested,” “concerned,” “inspiring” and “vibrant” were used todescribe not just the leaders but members in the groups within the organization.“Having a chance to speak out without being censored” and “the honesty withwhich people spoke and did not have to hide their emotions” were two comments131about what participants “liked best” about the workshop. This aspect is fosteredby the actions of the leaders who are described as “open and honest.”When asked about what works for new members, Barbara said: “Well, thekinds of things that worked for me. . . . First and foremost it is validation of theirsituation, where they are now, what they are going through. The sense that atlast somebody is hearing what I am going through” (V3, 212). Bridget said: “I amjust talking about the power within everybody that we have and they just, wellthey encourage those beliefs. I mean, they don’t- -you feel safe having those beliefsand expressing that you have those beliefs” (L2, 311). She continued to talk abouther workshop experience.I remember when we came to the workshop I was absolutely terrified. Ithought, “Boy, am I going to be, you know, judged, about a cancerpersonality” or “What have you done to yourself to get cancer and thosethings.” I thought “Oh, it is going to be a really morbid weekend. Youknow, people sitting around crying and--well, we laughed, we cried but welaughed so much that weekend it was, it was amazing (L2, 413).Importance of Peer RelationshipIt is interesting that while they acknowledge their expertise, the leaders arecareful to not take on the expert role. Leaders provided two reasons for this.First, Moyra clearly believes that people have to shift from wanting help to beingable to help themselves.It is harder for me to go through all the steps with people now and I knowthere is a danger, I can see after all these years of doing it, there is five orsix things that if people do them they have a good chance of survival. Youcan’t just say to do them, because people have to go from wanting help tohelping themselves to getting free of this disease in some shape or form orgoing on the path of dying and dealing with that (Vi, 376).132She says that she no longer identifies herself as a cancer patient [italics added]but chooses to say she is a person who had cancer and adds: “I think you needsomeone who has helped themselves but who isn’t so set in their ways that theyno longer can see what it is like to be in that person’s shoes” (Vi, 359).Barbara discusses the second reason, which is to not become distanced ininteractions in a “professional” way. She stresses the importance of focusing onthe peer relationship rather than portraying oneself as the expert:I think of myself as a teacher but also as a learner, I guess. I feel that bothroles are important. I have to see myself as first, as a human being first ofall, in the same sort of situation as people who come to see us. I think to beable to connect and to empathize with people on an equal level, on a peerlevel is really important. So I see myself not just as a teacher but as a peerto people who come here. I think there is a real danger when you start tothink of yourself the expert then you become just like all the other expertswho are just giving out and never willing to learn from their clients or theirpatients or whatever. So it is a give and take role (V2, 313).Maggie had a very similar view:When I first started out on this path and had got, well, I mean I felt that Iwas in the position to sort of tell people, well, you have to do this, this andthis and I found that that is not necessarily so that because I took a certainpath does not mean that somebody else has to take that path. So yes, in myhead there are the teachers and there are those who don’t know andtherefore the teachers teach and the students learn and now I see that itgoes both ways that the people we deal with can teach us in some ways aswell (V2, 56).Moyra also expressed a concern to not be too forceful in her ideas. She said:I think probably I am less--what do you call it--I hate the word missionary,but there’s a missionary zeal. Before it was so important for me to convinceother people that what they did was make a difference and now I feel it isup to them to make a choice and even though I still try to put it out in avery positive and very forceful way in some sense, what they do now is notso much a, not to say I don’t care, it is not so important for me to convincethat person that they could stay alive because I no longer think that it ispossible for everyone to do it. I realized that at the beginning but I just133thought that if you, that if I could somehow get it across, it might make adifference. I think therefore I could be more relaxed with the person andless in a sense of maybe manipulating them and urn, I, they don’t have tosee my point of view, it is here as information, we care what happens butit’s not a personal affront if someone doesn’t do it or if they die or what (Vi,219).The beliefs about assisting persons with cancer also have a strong influenceon the learnings of the members of HOPE. The ideology of the group is not onlyput forth by experienced peers; it is put forth in a certain atmosphere whichvalues safety, sharing, peer relationships and knowledge grounded in experience.Base of PowerThe kind of power attributed to self-help group members is called “referent”and is said to differ from the “expert” power of the professional helper and “social”power of the informal helper (Powell, 1990, p. 40). Referent power is based on theperceived likeness of the new members and the veterans of the organization.There is an attraction accompanied by a “desire to become closely associated with”(French and Raven, 1968, p.266). Jane said that after hearing a presentation inNanaimo:I came out feeling that there is someone who understands how I feel, likethese people know what I am going through and they know. I am sure thatI could talk to them and I knew there and then that I wanted, they saidthat they do these workshops in Vancouver and I knew whatever it costs Iwanted to go to one (L8, 68).Maggie expresses this similarly from the leaders’ viewpoint:But the benefit of HOPE or the uniqueness of HOPE that it is cancer survivors that are running it. It is not just another professional telling youwhat to do, it is somebody who has actually taken steps to do it that I thinkis one of the things that might draw people to HOPE, that might make134them want to see some value in what we do. . . . I think that the really bigfactor is in people accepting the idea is that they have living proof of peoplewho have done it and it is not just some intellectual exercise. It’s kind of ahands on kind of thing (V2, 734, 755).Of interest in this organization is a distinction made by French and Raventhat “conformity with major opinion is sometimes based on a respect for thecollective wisdom of the group, in which case it is expert power” (1968, p. 266).Members certainly recognized an “expertness” in the leaders. And the valueattributed to the knowledge was enhanced by the fact that this knowledge wasexperiential rather than theoretical, which is the basis of professional expertise.This was certainly the case for David, who said that after talking with the leadersin the ROPE office: “I thought ‘Wow,’ I want to check things out further withthese people because their insight was there, they had the experience” (L5, 132).The leaders acknowledge and value both kinds of power. Maggie’sunderstanding of referent power is revealed in her comments about the kind ofempathy she can provide:Being able to talk to somebody about, you know, well I’ve lost all my hairtoo. And yes, I know that people said to me, “Oh, it will grow in again.”You don’t realize how traumatic that is. I know, when I see somebody whois going to lose their hair or has lost their hair. I mean I can empathizewith them, I can express that, “I know, I was there” and I think that is good(V2, 755).Moyra agreed that “Your experience in dealing with cancer is pretty valid whenyou are well yourself’ and “even though I am not a professional, I feel I have a lotof expertise in this particular field” (Vi, 292). It is important to note that theexpertise that the leaders identify is of two kinds. One is their experience indealing with cancer and the other is experiential knowledge developed from135working with cancer patients and discovering methods that work for them.The leaders also presented an ethical perspective in relation to theirposition. Moyra said: “And I guess another thing that has progressed me to beinga veteran, ‘walking on a cane,’ is that I’m constantly undergoing examination,asking myself ‘Why am I doing this?’ and ‘What benefits people?’”(Vi, 453).Barbara said:It is also important for me to recognize that I may not be able to have allthe answers, and that I don’t have the power over changing other people. Ican only do the best that I can and to help people to the best of my ability.I think sometimes that the way that I can best help people is to be a humanbeing, be a person (V3, 344).These data describe a base of power similar to what is described in theliterature on other self-help groups. The profound importance of the experientialnature of the knowledge base is underscored by this same data.CompositionIn the context of self-help groups, the source of help is the membersthemselves and the composition of the group is some mix of new and oldermembers. The older members who take an active role in assisting new membershave been labelled “old-timers” and “veterans” (Borkman, 1976).HOPE has not maintained a “scientific” record of the status of theirmembers; therefore information about the total numbers of living members or ofthe ratio of newcomers to oldtimers is not available. The mailing list for thenewsletter has between 450 and 500 names, but includes some interestedprofessionals as well as cancer patients and relatives or other support persons.136One of the difficult realities of HOPE is that many members die from the diseaseand there is a continual drain on membership. As well, not all persons whoattend an introductory workshop stay in contact and are lost as active members.In HOPE there are currently three paid staff positions that are ifiled byveterans. And there are other members that qualify for veteran status on thebasis of length of time of their membership. Not all these members are activelyinvolved; there are a few reasons for this. One is a lack of regularity of ongoingactivities for members to attend. Also, persons come to Vancouver from out oftown to attend workshops and their participation is restricted by their location.An older member attributed reduced energy due to age as a factor in her reducedparticipation. She said: “Through the five years, of course, I’ve lost a lot of energyand I don’t have the energy to be as active as I would like to” (Lii, 120).There are two other aspects of the composition that emerged from the data.One is that support persons who attend the introductory workshops with cancerpatients are also viewed as members of HOPE. At times there have been ongoingsupport groups led and attended by the “support” members of HOPE but there arenone presently operating. Support people attend other special sessions such asthe learning circle on “death and dying” and get involved in “payback” worksimilar to cancer patient members. Avril is one such member. The only supportperson interviewed, Avril related her desire to share in the work of theorganization.After Maurice died I just felt that I wanted to come back, it was just a placethat I was drawn to. It just made me feel positive and good and although ithadn’t gone well- -Maurice was not cured--it certainly had given him some137hope for the time he was alive and I felt very positive about it and I wantedto share it with other people (L1O, 365).She has been doing clerical work on a volunteer basis one day a week for twoyears.Another aspect of composition revealed in the data is a variation in theseriousness of prognosis for the cancer patients coming to HOPE. It has beenstated that members of the initial group had “terminal” cancer, in the sense thatthey had been told by their medical helpers that there were no more curativetreatments available. While many newcomers to HOPE come at this very samepoint, now more come on the basis of an awareness that what HOPE offers mightalso be helpful in preventing recurrence of cancer. Bridget is a health careprofessional and knew of HOPE’s work before she got cancer. She also had caredfor many cancer patients.I knew that I had to take charge and be responsible for my own health,that the medical profession had done what could be done. In fact, Dr. R.said to me, . . . well he didn’t say when it recurs, he said if [italics added]but it was, . . . He said you will know that you have done everything thatyou could and I knew that I hadn’t done everything. I knew that they haddone everything they could but now it was up to me. And, urn, I felt that Ineeded to come to HOPE for the support (L2, 240).Phyllis said when a medical person suggested she attend HOPE after her firstdiagnosis: “I did. I’m like that, when I hear about something I’ll pursue it” (Lii,50).HOPE depends on their newsletter, spotlight newspaper articles and wordof mouth promotion rather than on media advertising. This influences the138composition of the organization. It has probably also affected the number ofmembers, a topic of discussion in the next section.InputsLike other organizations, self-help groups require certain inputs in order tomaintain themselves. The most important inputs for self-help groups are newmembers, volunteer or “payback” work by senior members and money. Knowledgeof the influence of these factors in the HOPE Cancer Health Centre enhancesunderstanding of the organization.MoneyFor the majority of self-help groups, money is not a problem because iowoverhead expenses allow them to function on limited budgets. This is not the casefor HOPE. Barbara revealed: “Finances have always been difficult: just keepingourselves established, just keeping ourselves going and maintaining our centre”(V3, 90).In 1987 the leaders decided to move the office of HOPE from Claude’s homeon York Street to a “store front” location on West Broadway. This move was bothchallenging and rewarding. The leaders were sure that a larger and moreaccessible space would enhance the organization by attracting new members andwould allow them to provide better services to all members. By choosing to havesuch a “centre,” they have a substantial monthly overhead.139Powell (1990) states that fee for service distinguishes the professional caregiving system from most self-help groups which operate with no fee or a verysmall fee for members. HOPE began charging a fee for their introductoryworkshops in 1983 because leaders were using their own money for expenses.Charging fees has led to two types of negative responses. Some believe theyshould not have to pay because the leaders are not experts and others view it as ahealth care service and feel that it should be free. Moyra expressed such concern:That is a difficulty and what we have received criticism over the years for,is the fees. . . . And that causes us a lot of discomfort and a lot of hurt, toobecause people say you know they don’t think they should pay for what wedo. . . . because people don’t see us as anything but people that have hadcancer (Vi, 692).Even with the fees, the organization suffers financial constraints. Barbaradescribes the other sources of funding as: “Donations primarily. . . support fromservice clubs, from things such as the casinos. . donations from individuals,bequests and from businesses. Some of it is donations to do the workshops.” Shesaid that also there “is an association with the United Way. . . . we do get somefunds if they are designated for HOPE” (V3, 95). HOPE has been significantlyhelped by the Fraternal Order of Eagles who now designate yearly fundingspecffically towards reducing the charge to members for the workshops. Otheragencies that make specific contributions are the “Face the World Foundation” andthe “John and Lotte Hecht Memorial Foundation.” These more dependablefunding agencies have made a significant contribution to HOPE’s viability.The financial position is more stable now than ever; however, two problemshave emerged. Maggie stated: “the one draw back is the financial that we have to140be concerned about financial affairs and that sort of stuff. We don’t put all ourenergy into the helping part” (V2, 530). The other problem is that the workshopfee may deter some cancer patients from joining despite the brochure stating thatfees will be subsidized when necessary.New MembersAs HOPE is shifting its focus from a support group to an educationalprogram, a large, active membership is not as important. A problem will arise,however, if an active membership is not somehow maintained to fill futureleadership positions. Maggie discusses the current situation:So I think the difficulty is getting people in the first, or has been, it’sbecoming easier now, more people hear about us now from differentagencies but when I first started it was the difficulty of getting the word outthat there is something that you can do. One of the difficulties has beenthat we have to charge for our services because people have been broughtup with the idea that medical illness is treated free cause of our medicalsystem (V2, 98).VeteransGenerally self-help groups depend almost entirely on volunteer work bysenior members to keep their organizations going. This work is termed “paybacks”(Powell, 1990, p. 43) and takes the form of office services such as publishingnewsletters, coding library materials, preparing handout materials and makingphone calls. Barbara reported: “We did rely a lot on volunteers and not a heck ofa lot of that to start with. Of course it was a very informal kind of leadershipwith Claude and Moyra. . . . And then I think they began to draw on additional141leadership and help from people who came through HOPE themselves” (V3, 124).Maintenance of the organization through tough times was really dependentupon the commitment of Claude and the other leaders. Moyra said:I think in order for it to have lasted this long we had to put part of oursouls into it and also I see for myself, maybe not so much with the peoplethat have come after Claude and I, we did in a sense sacrifice quite a lot toget it going, though I don’t regret it (Vi, 263).Maggie stated in her interview: “I mean I had to do it. I felt I had to do it becausethis organization had to continue and this was really important” (V3, 506).As in many other self-help groups, the kind and number of activities thatcan be planned for HOPE members is dependent upon the number of workers,either volunteer or paid. Jim, who spoke very appreciatively of the leaders and ofthe social and fun activities that he had attended, lamented the need for moreworkers: “It is just a shame that there aren’t more people on the HOPE staff sothat they can plan more fun things. . . . But you have to have the bodies toorganize it. It is work and you need the bodies to do it” (L7, 498). Some self-helpgroups developed in size and formality to the degree where the programs arestandardized and several franchises exist. Alcoholics Anonymous and WeightWatchers are two examples.Some out of town members of HOPE have participated in or led groups forcancer patients in their towns as a result of their involvement in HOPE. Thisaspect is included in a section called “Organization Design.” The nextcharacteristic described is origin and sanction.142Origin and SanctionThe origin of most self-help groups has been the indigenous people, thoseconcerned with the problem. This is the case with HOPE. Claude Dosdall hadbeen a cancer patient for four years prior to gathering together the other cancerpatients for support. He tells of the beginning of HOPE in his book, My God IThought You’d Died (Dosdall & Broatch, 1986).One of the things Carl Simonton had emphasized in the June 1980 seminarwas that cancer patients need a support system, one made up of peopleother than family members. I had so often longed to share my experiencesand compare notes and I needed more than my casual contacts in clinicwaiting rooms. When I discovered to my surprise that there was no suchgroup in Vancouver, I decided to start my own (p. 86).One of the significant ways that self-help organizations differ is in the kindand degree of affiliation or association with professionals or formal agencies.Borkman (1976) refers to groups of peers that are actually led by professionals assupport groups, excluding them from the self-help group classification. However,many self-help groups are developed by an agency or establish some degree ofaffiliation with a professional or an agency. The CanSurmount groups that aresponsored by the American and Canadian Cancer Societies are examples. Suchgroups have the advantage of the sanction provided by professionals andestablished community organizations. Some groups function quite independently.HOPE Cancer Health Centre now fits into the independent category,although in the very beginning a nurse was involved. At various times affiliationwith service clubs and other cancer groups has been considered but HOPE iscurrently an independent organization.143There are statements made by both Moyra and Claude about the lack offormal support from the Cancer Agency at the time of origin. Claude said: “Thehead of the B.C. Cancer Control Agency would not support a group whose aim wasto encourage people to take responsibility for their own illness and health,believing patients would feel guilty if they died” (Dosdall & Broatch, 1986, p. 86).Moyra recalls the climate at that time, “I think that some of the concerns wereone, that patients didn’t know what the hell they were doing and two, that it wasnot accepted that the person’s actions or thoughts or emotions had any impact onthe outcome of cancer. . . So it went against their policy” (Vi, 991).Claude states that “a nurse at the Cancer Clinic who had taken theSimonton Therapist Training Program helped spread the word and was invaluablein starting and helping that first year.” (Dosdall & Broatch, 1986, p. 87). Moyrawas told of the group by this same nurse and adds: “It was a very secretive ‘hushhush’ thing in those days.” She also elaborates that this nurse clearly took abackground position: “It really was just a self-help group without any leadershipreally. Though this nurse that I mentioned before was supposedly the professionalbut she mostly listened. She didn’t interfere” (Vi, 76).This early wariness and lack of acceptance by the formal cancer agencieshas changed significantly since the beginning of HOPE. Jim thinks that “HOPE,in this part of the country anyhow, were the originators of the, for the philosophywhich you can get into remission and suppress cancer just by holistic healing. . .Now doctors are becoming enlightened” (L7, 185,198). Barbara said this whenasked about successes of this group: “The growing acceptance of our organization144and our services by professional organizations such as the health careorganizations, social workers, nursing groups, even doctors. So that is one bigmeasure of how I think we have succeeded” (V3, 80).At one time the leaders considered affiliating with the central agencyproviding support services to cancer patients. The advantage of such a movewould have been twofold: stable financial support and an extension of thelegitimacy of the central agency would have been available. The importance ofautonomy is one reason identified in the literature for many self-help groupsachieving or maintaining independence. Barbara answered a question aboutexisting affiliations with funding agencies this way:No, none at all. It has been attempted in the past and it hasn’t reallyworked out. We think its important to keep our autonomy to, ah, in the pastI think when we did make attempt to go under somebody else’s biggerumbrella, there seemed to be so many demands for change to conform to thebigger organization. We came to feel it wasn’t worth it for the financialsupport. Plus one of the things that I think makes it really appealing topeople too is that we are an autonomous group. We are different from thecancer society. We are not associated with a big bureaucratic organization.So we have come to see that it is much more to our benefit to remainautonomous--small and struggling, but unique (V3, 103).The notion of sanction or legitimacy extends beyond the issue of formalassociation with professionals or formal agencies to the web of relationships in thecommunity. Now there are more cancer patients coming to HOPE by referral fromhealth care professionals. That this is viewed as a success attests to the effortand conscientiousness of the HOPE staff to continually project a positive image oftheir work with cancer patients. Another factor that has significantly contributedto their acceptance as a legitimate organization is an overall increase in the145general acceptance of the ideas that HOPE has always espoused.It has been posited that self-help groups arise out of need of the membersfor services that are not available from professionals, either in amount or kind(Katz, 1970). The self-help ethos is by nature at slight variance from professionalcare. The degree of this variance is related to how much acceptance of theproblem of concern and the methods of solving it are at variance from the view ofthe dominant culture. Acceptability of the teachings of HOPE are far moremainstream now than they were in 1980 when HOPE was founded. One of thegreatest positive influences was the widespread popularity of the writings of Dr.Bernie Siegel (1986, 1989) and others, such as Dr. Jeanne Achterberg (1985) andDr. Joan Borysenko (1987). It is believed these writings influenced cancerpatients and health care professionals alike.Gradually, more programs have been developed within the formalinstitutions which reflect acceptance of the mind body connection and the value ofself healing approaches. In 1988, classes and ongoing sessions of relaxation andhealing meditation were introduced at the B.C. Cancer Agency. In fact, the personresponsible for these classes attributes agency support for beginning them partlyto similar services being offered in the community (by HOPE) and the reports thatparticipants found them helpful (L. Smith, personal communication, April 4,1994).ControlThe existence of HOPE as an independent unaffiliated self-help organization146has already been established. Therefore, the control of activities is within theorganization. HOPE is registered under the Societies Act of B.C. and thisregistration permits participation in certain fund raising activities and thedistribution of tax deductible receipts for donations. For example, HOPE, as aregistered charitable organization can participate in the B.C. Lottery sponsoredcasinos. In exchange for volunteer service on designated days of operation,organizations receive 50% of the profits for these evenings. This is usually asizable amount of money. Along with these rights are certain responsibilities,mainly in the area of financial accountability.The descriptive data considered in this section are related to the internaldynamics of the HOPE organization: the leadership style and input into theorganization by the members.LeadershipIt has been established that the leadership in this organization comes fromwithin. Dynamics related to this, such as the give and take of roles in self-helpgroups, are evident. Another dimension of leadership in self-help groups is thepersonal commitment of the persons assuming these positions. Some of thedialogues collected support the presence of this dimension in the HOPEorganization.The credit for the initial formation of the support group goes to Claude. Inhis book, Claude identified as a goal he set in 1977: “I want to work with people ina workshop setting” (1986, p. 25) and suggests that the movement of HOPE from a147small support group to an organization with programs was the realization of thisgoal. He writes that its work and growth had become his full time “occupationand pre-occupation” (p. 87). Although Claude and Moyra were co-leaders forseveral years, Claude was somehow identified by the members as the dominantleader.The decision making is largely controlled by the leaders. Both a Board andan advisory group exist and all their members have had an affiliation with HOPE.Member InputUnfortunately the kinds and number of programs that HOPE is able to offerdepends on the number of members that are able and choose to be involved. Keydecisions about HOPE’s day to day operations are made by the staff however,input from the membership is also considered. Of significance, in terms of focusfor this group, was the acceptance of one member’s proposal to lead a series ofmeetings on death and dying. There was initial resistance to this idea because itwas believed to be at odds with the central focus of “fighting cancer actively.”Since the first group was held and positive feedback was received, more sessionson death and dying have been held. Another example of member input is a recentdecision to have “drop-in” sessions because this member thought they had beenvaluable to her and she was now willing to help lead some sessions.Organizational DesignThe organizational design does not clearly distinguish self-help groups from148other care giving systems because the degree of formality extends from veryinformal to very formal. As a rule, professional systems are formal and caregiving by family and friends is by nature informal.A change over time in degree of formality and association with otheragencies or professionals is consistent with self-help groups and HOPE exhibitsseveral examples of ways that it has changed. Barbara suggests one such change:“We emphasize more education and more encouragement to self-help than tosupport group as such, like a peer support group” (V3, 17). Moyra states: “It haschanged from being sort of an unstructured program, a drop-in program, to beingwhat I see as a very structured program” (Vi, 111). HOPE as an organizationconsistently scrutinizes its purpose and its resources to determine what it can bestachieve and how this can be done.The program changes and the increased membership have created otherchanges. Moyra states: “What has changed also is it has changed from a smallsort of almost like a family group to more or less like an organization. So in asense, what we may have lost is some of the closeness and mutual support” (Vi,119). Barbara disagrees about the loss of closeness:At the same time, I think we are very fortunate to have such a closerelationship so even though our organization has got to be a more of aformal organization and more structured, we managed to keep that close,that closeness that was there at the very beginning. That is so importantfor us to see ourselves, first of all as needing and also being able to providesupport for each other and I think that has been absolutely vital to keepingus as an organization and recognition that we really have to keep lookingafter ourselves and each other. I have never been in any other place thathas provided that kind of recognition of our, both our personal andprofessional needs (V3, 301).149Moyra believes another change is that HOPE is more of a communityorganization: “I think it has grown into a community service or whatever and theself-help idea is still there but there is guidance to get to the point where peoplecan help themselves” (Vi, 156). Moyra no longer feels like “just a small littlecancer patient trying to change the world” (Vi, 176). Now as leader of anorganization with a store front and a variety of services she feels like “we are justanother part of the group” of a larger care giving system (Vi, 178).Some of the participants interviewed wished for the return of someactivities that are no longer held. Bridget said:And I guess because the staff is small their work load is heavier and wehave only had that one big retreat in Squamish. There wasn’t an interestafter that. And I often wonder if that is because the monthly meetingsstopped. Because you would get together, there would be the same, more orless the same people coming to the monthly meetings and so maybe whenthey stopped, people stopped . . . it just changed. The whole structure ofHOPE changed. The workshops have stayed the same but they used tohave yoga classes here, and the drop-in evenings (L2, 651).When asked what had influenced the changes in the organization, Barbaraidentified three factors: the numbers of learners, the increased knowledge of themembers and the growing expertise of the leaders.Sheer growth of the organization, the numbers of people that have come toHOPE. So we have had to formalize it more. We have had to develop moreof an educational program, a more structured approach than was itoriginally when it started. I think that is one of the big reasons, thenumbers of people. Also, I think is has been the growing expertise of thepeople in HOPE. In the people that run HOPE. As we have learned moreand there has been, we learned more about communicating with people ingroups. I think that it has helped to change it too to a more structuredapproach. . . . Plus everyone has become more knowledgeable andsophisticated too and they are more knowledgeable (V3, 25, 45).150Other CharacteristicsThe action orientation of HOPE and the determination with which theyhave continued to achieve their purposes is also characteristic of self-help groupsin general.Developmental Stages or Life CycleVarious studies done on the life cycle of self-help groups have producedmodels of development of self-help groups. The first four stages in a model byKatz (1970) are origin, informal organization and emergence of leadership and thebeginning of formal organization. At HOPE, all three of the current staffmembers spoke of a change to a more structured program and toward a morefocused educational program rather than provision of mutual support. Also, atransition from having office space in Claude Dosdall’s home to having a storefront office on West Broadway was a significant change. It signalled acommitment to provide ongoing service in the community.Katz (1970) suggests the beginnings of professionalism is a final stage forself-help groups and there is some indication of movement towards this. Thecurrent director, Moyra, just recently stated she would like to make some changesto further refine the education programming by developing packaged materialsand a leader training program so that workshops could be held in other locations.She also stated she wanted the organization to be more “professional.”The model defined by Back and Taylor (1976) is similar, but the last twosteps in their model are formation of a general ideology and movement to an151expressive or political stage. In the section on purpose, it was concluded thatHOPE’s central purpose has much more to do with helping members cope with theproblem than with social activism. The need for social activism has lessenedbecause of the greater acceptance in the general public and by health careprofessionals of the beliefs on which HOPE’s programs are based. In thebeginning, this was not the case and the discrepancy was noticed on a personal aswell as a global level. As Claude said: “My 1970 self would have looked at mypresent self and called me a nut!” (Dosdall & Broatch, 1986, p. 7).Still, advocacy work is a theme. As in most self-help groups, the thrust atHOPE is to help people shift the responsibility for their health from theprofessional to themselves. Group members are told to become involved in thedecision making for their treatment plans and care in order to regain a sense ofcontrol. Also, the values of the self-help approach are continually promoted toprofessional health care workers.HOPE’s leaders have the desire for services similar to theirs to be availableto all cancer patients. This means they have tended to work carefully towardsgaining acceptance from the health care community. Barbara spoke candidly oftheir desire to be accepted:One of the major drawbacks in the past is resistance from the medicalestablishment, our mainstream health outlook. In the past that was a realstumbling block and I guess we have always found it important in the pastto be accepted by the establishment. The establishment doesn’t seem asimportant now but maybe it doesn’t seem as important because we in factare more accepted (V3, 84).152Other advocacy work for cancer patients has been achieved by havingmembers participate in panels at seminars, or in television and radio talk shows,speaking about their work with HOPE and telling their personal stories. Justrecently five women with breast cancer participated in the filming of adocumentary called Breast Cancer: Silence Broken.SummaryAny attempt to summarize a detailed description is difficult and bound to beinadequate. The description of the characteristics of HOPE has demonstrated itsuniqueness and underscore its identity as a self-help group. As a whole, theyexplain how HOPE presented itself as a self-help organization to fill a vacuumcreated by a paradigm shift from the pure medical model of treatment for cancerpatients to a model of more holistic understanding of cancer of multifactorialcausation and treatment.Certain characteristics warrant review. The central purpose of HOPE hasbeen identified as offering help and encouragement to all cancer patients who wishto take an active part in their cancer treatment and recovery process. HOPEbegan as a mutual support group. It has evolved over time and the leaders havedeveloped educational programs and are interested in providing more professionalservices. The mutual assistance aspect is still stressed although there are fewongoing support groups.Programs and activities are designed to foster interaction between cancerpatients and to create an atmosphere where cancer patients can be comfortable153and begin to feel normal. Emphasis is placed on becoming knowledgable aboutcancer and cancer treatments and some special techniques for self-help areintroduced in the sessions. Hope and a sense of control are considered to behelpful in the healing process and are emphasized in the programs.The knowledge base derived from the personal learnings of members ofHOPE can be called its ideology. The ideology provides the frame of reference forthe learning experiences of the members and it is integral to the changes thatmembers experience. The learning experiences of the members of HOPE is thefocus of the next chapter. Because of the importance of the ideology as the frameof reference for learning at HOPE the central beliefs are reiterated here.• Human beings have personal resources for healing that can be accessed andstimulated.• Mind, body and spirit are dynamically interconnected and healing thathappens in any domain affects the whole being.• Positive emotions support healing and the body is healthier when emotionsof all kinds are expressed rather than withheld.• Active participation in treatment is essential to gain a sense of control,believed to be important for healing.• Development of personal and other resources contributes to feelings of hopeand empowerment considered conducive to healing.• Causation of cancer disease is multifactorial therefore psychosocial andspiritual needs require the same attention as physical needs.154CHAPTER SIXLEARNING WITH PEERSThe focus of this chapter is the learning experiences of selected members ofHOPE. The learners’ perspective has been taken; this revealed the multiplerealities and subjectivity of learning within the context of a group. Thedata are rich in themselves. With the addition of interpretive commentary basedon literature in adult learning, a meaningful and illuminative picture of thelearning experiences of members of HOPE is provided. Four themes emerged fromthe data and will be used to establish a broad frame for organization of thematerial in this chapter.A large element of interest in self-help groups focuses on the outcomesachieved by members of self-help groups and the processes that effect theseapparent changes. Also of interest is how the processes differentiate self-helpgroups as a care giving system from professional care and from care provided byfamilies and friends is also of interest. The processes found to effect changes inself-help group members have previously been studied using concepts frompsychology and sociology. Application of concepts from small group theory is oneexample (Blair, 1987; Levy, 1976; Lieberman, 1979). While useful, these analyseshave tended to limit the explanation to the positive results of sharing experienceswith like minded people, such as reducing anxiety and promoting more effectivebehavior. Some studies have identified other mechanisms of change in self-helpgroups. They are the experiential knowledge base (Borkman, 1976) and the155ideology of groups (Antze, 1976). Discussion of these propositions and the relatedconcepts has been provided in Chapter Three.Educators have tended to show little interest in self-help groups becausethey seem to exist within the care giving system as opposed to the educationsystem. However, there are many concepts and propositions in the literature onadult learning that appear to have potential for illuminating the elementsconsidered to be key in the change mechanisms and processes studied in theliterature on self-help groups. On this basis, adult learning was chosen as thecentral focus for exploring the experiences of members within the context of aparticular self-help organization, i.e., that of HOPE.For this study, learning is defined as “the process of making a new orrevised interpretation of the meaning of an experience which gives subsequentunderstanding, appreciation and action” (Mezirow, 1990, p. 1). To help focus thedata collection and analysis, literature on adult learning which containedconceptual work on elements similar to concepts found in literature on change inself-help groups was selected. Three perspectives on adult learning were reviewedin Chapter Three. They will be reintroduced again following discussion of theorganization of this chapter.It is noted that an in-depth analysis of the phenomenon of adults learningat HOPE Cancer Health Centre was not within the scope of this study nor werethe data intended to validate the selected theoretical works on adult learning.Questions asked HOPE members were not so specific as to solicit responses thatwould tightly fit any one of the theoretical frameworks; rather open-ended156questions were used to encourage the participants to reveal their own perceptionsof their learning experiences. As such, the data are in narrative form and notspecific in a way that would validate specific concepts or relationships posited by aparticular framework.Organization of the material in this chapter presented a challenge.Typically data on learning would be presented as processes and outcomes. Thiswas attempted but was not effective for two reasons. First, the categories weretoo large and lacked definition. Second, the different perspectives on adultlearning selected to provide interpretation overlap; meaning was lost when morethan one perspective related to certain data.An effort to organize the material according to the theoretical writingscreated a different problem. It presumed that the data were meant to support orvalidate the concepts and propositions in the different perspectives on adultlearning. However, the intention of this study was to gain understanding of thephenomenon by providing a rich description from the perspective of the learners.The theoretical writings are meant to be secondary to the data. The data do,however, support the theoretical writings; therefore, this direction has been takento some degree.During the process of moving back and forth between the perspectives onadult learning and the data, four themes emerged in a way that allows forpredominate explanation by one of the three selected perspectives on adultlearning: experiential, transformative and situated learning. The four themes are:the group’s ideology as a frame of reference to learning; personal and shared157experience as the test of knowledge; the power of the affective dimension ofexperience in learning; and the significant contributions of learning with peers asthe context of learning.Preview of the Four ThemesParticipants were asked what benefits they had received from being amember of HOPE and what they had learned. The questions asked emerged fromthe literature on self-help groups and on adult learning. Therefore, the themesthat emerged from the data are closely related to the theoretical writings whichpresent the perspectives of experiential learning, transformative learning andsituated learning. To reiterate, the four themes are: the group’s ideology as aframe of reference to learning; personal and shared experience as the test ofknowledge; the power of the affective dimension of experience in learning; and thesignificance of “learning with peers” as the context of learning.The first theme to emerge was that the learning was centrally connected tothe ideology of HOPE. The ideology has been discussed in Chapter Five as theknowledge base of HOPE.One way of viewing learning in relation to ideology is to focus on outcomes.There was evidence of a variety of outcomes. Some outcomes demonstratedsignificant transformation of meaning perspectives and some related to expansionand integration of the new meaning once it has been adopted. Therefore, aframework of forms of learning provided by Mezirow (1991) that includes forms oftransformative learning is used to organize the data and explain the data within158this theme. Processes related to transformative learning will be discussed brieflyto expand the understanding of learning related learning connected to theideology.The second theme which emerged is the experiential basis of knowledge inthis learning context. The experiences of cancer as a disease and the newexperiences related to learning are both known and transformed through personallived experience. Thus, personal experience becomes a medium of learning andthe test of knowledge. The accumulated wisdom of the group which is expressedas the group’s ideology is experientially based. It is passed on by the veterans ormore experienced members and the knowledge is viewed as credible because it istheir own, grounded by their own personal experiences. At first the beliefs may betaken on faith because they are attractive, but the new members then personalizeand make them their own by grappling with the beliefs in the context of their ownexperience.Almost inseparable but worthy of separation for the purposes of discussionis the significance of the affective dimension in the learning experiences of themembers of HOPE. The experience of cancer is profoundly emotionally laden andit follows that this dimension of learning emerge as integral and inseparable inthe learning processes and in the products. In fact some feelings that surface asoutcomes appear to be important as key elements in the process of learning.Hope, inspiration and sense of personal power are examples. The affectivedimension of learning is given attention in all the selected conceptual frameworksand to the greatest degree in the literature on experiential learning.159The fourth theme is expressed as “being with peers” and encloses theprocesses of learning relating to the aspect of a self-help group as the context oflearning. In all cases, this context of learning was valued mostly for the benefitsof being with peers in the experiences of learning. Being together with likeminded people is significantly beneficial in all the dimensions of learning:cognitive, affective, social and spiritual. The view of learning as being inseparablefrom the communities of practice in which learners participate is the perspectivetaken in the literature on situated learning. It provides the frame and theconcepts to best consider and understand the significance of this aspect of thelearning experiences of members of HOPE.The concepts developed in situated learning are also useful for considerationof the phenomenon of members shifting from newcomer to veteran in anorganization like HOPE. The process is important for the maintenance of theorganization in a purely practical way and also is critically related to the ideology.Ideology is viewed as both the cause and effect of learning and movement bymembers in the group. Lastly, self-help groups as learning communities aresituated in a larger community of other service providers and implications ofaccess to learning can be addressed within this theme.Before each theme is presented more fully, brief reviews of the theoreticalperspectives are needed in order to emphasize the concepts considered to be mostvital. It is believed that the data and the varied contributions of the writings onadult learning, in combination, provide an exciting and illuminating picture ofadults learning within the context of a self-help group: adults learning with peers.160Three Perspectives of Adult LearningThe initial search of literature on adult learning was directed by the keyconcepts of peer groups, experiential knowledge, ideology and transformation. Theliterature recognized as having explanatory power for these elements focuses onexperiential learning, transformative learning and situated learning.Perspective of Transformative LearningTransformative learning provides another perspective on adult learning. Itdescribes a learning process that begins with a disorienting dilemma and involvesacknowledgement and examination of the “cultural assumptions governing therules, roles, conventions and social expectations which dictate the way we see,think, feel and act” (Mezirow, 1981, p. 11). Through activities that involve criticaldialogue and critical reflection, meaning perspectives are reformulated to allow amore discriminating and inclusive understanding of one’s experience. This usuallyresults in new attitudes and behaviors. Transformative learning concepts havevalue for this study because they provide a frame for viewing the learningexperiences of the members of HOPE as they grapple with the ideology of HOPE.In his early work, Mezirow (1978) identified three steps in the process ofperspective transformation. The steps are alienation, reframing and contractualsolidarity. In her model of transformative learning, Taylor (1989) delineates threevery similar phases and names them: generation, transformation and integration.Some details of the steps in this process have been presented in the literaturereview in Chapter Three.161There are references in this set of literature to learning in groups andMezirow contends that consensual validation of what is asserted is essential whenthere are no empirical tests of truth available (1990, p. 11). This is achievedthrough critical dialogue. It is noted that experience itself is not emphasized as atest of knowledge and, as has been suggested, the profound role of experience asthe medium for the learning of members of HOPE requires consideration.The model of transformative learning also develops the concepts of criticalreflection and critical self-reflection as central processes. Mezirow considersreference groups as an essential way of fostering these processes. He sees theseadvantages:Role modelling, uncritical group support and solidarity; helping learners tolink self-insights with internalized social norms and to understand thatothers share their dilemma; and providing a secure environment thatfosters the trust necessary for critical self-examination and the expression offeelings (Mezirow & Associates, 1990, p. 360).Another contribution from this set of literature is a frame provided byMezirow (1991) of four forms of adult learning. This frame was not discussed inthe original review of literature. The relevancy of literature is not always evidentprior to the actual research but it has become apparent that this frame has powerto organize the learning outcomes in a meaningful way. The four forms oflearning will be described in a later section alongside the data.Perspective of Experiential LearningThe literature on experiential learning was selected for review because ofthe attention to experiential knowledge in literature on self-help groups (Borkman,1621976; Maton, 1989; Powell, 1990). In discussions of self-help groups theexperiential knowledge that is recognized as characteristic of self-help groups ispractical “how-to” knowledge developed from a trial and error process whendealing with the problems of concern (Borkman, 1976). Review of the literatureon experiential learning revealed that experiential knowledge can also bepropositional in nature. In this case, learning involves integrating personal orvicarious experience into a frame of propositional knowledge in a way thatpersonalizes it and makes it true. Examples of both practical and propositionalknowledge have been identified in the data and both are viewed as experiential.Kolb’s model of experiential learning, which is widely used, has four steps:concrete experience, observations and reflections, formation of abstract conceptsand generalizations, and testing implications of concepts in new situations (Kolb &Fry, 1975). Detailed attention will not be given to each step, but reflection in thelearning process and attention to the affective dimensions of learning asemphasized by Boud, Keough and Walker (1985) is important. They provide amodel that illustrates the relationships they view as integral to experientiallearning. It is shown in Figure 3.163Figure 3: The reflection process in context.Source: Boud, Walker & Keough, 1985, P. 36.The sharing of knowledge by peers is rarely referred to in this body ofliterature except for a few references to the value of peer groups in the stage ofreflection. Boud, Keough and Walker (1985) noted that reflection can be enhancedby “comparing notes, roundtable discussions, and informal group discussion”(1985, p.8). They emphasize the critical importance of reflection to personalizeand transform experience into knowledge and note that it may take place inassociation with others or in isolation.Boud, Keough and Walker (1985) clearly emphasize the affective dimensionof learning. They view the emotional response of the learner to be critical:Depending on the circumstances and our intentions we need either to workwith our emotional response, find ways of setting them aside, or if they arepositive ones retaining and enhancing them. If they do form barriers, theseExperience(s) Reflective processes Outcomes164need to be recognized as such and removed before the learning process canproceed (1985, p. 29).The members of HOPE placed high value on learning with people who understoodprecisely what they were going through emotionally. Therefore, attention to theaffective dimension in the learning process is significant.Perspective of Situated LearningThe notion of others learning from expert peers is best addressed in Laveand Wenger’s work entitled Situated Learning: Legitimate PeripheralParticipation (1991). In their view, learning occurs through participation in asociocultural community which is dynamic and ongoing. This notion isunderpinned by the belief that knowledge is socially constructed. Therefore, boththe community of practice and the larger community change as a result of theparticipation of the members.The concept “legitimate peripheral participation” designates a participationin a social practice which includes characteristics of legitimacy, accessibility andmovement. Participants move from a peripheral position to a central one as theychange through acquisition of new knowledgeable skills. This picture appears tobe congruent with that of self-help groups where individuals not only learn, butbecome “teachers” as their proficiency in the practice of “helping yourself’ bringsthem successful outcomes and they begin to have more confidence in their ownexperiential knowledge base. Also, the notion of learning as both the cause andeffect of practice (Lave and Wenger, 1991) creates a fluid and dynamic picture of165this process: one which appears to fit with the learning of members within self-help groups.Part of the work of Lave and Wenger (1991) builds on a concept firstdeveloped by Vygotsky (1978). Zone of proximal development is defined as: “thedistance between the actual developmental level as determined by independentproblem solving and the level of potential development as determined throughproblem solving under adult guidance or in collaboration with more capable peers”(Vygotsky, 1978, p. 86). It places value on interaction between peers in thelearning process. Ability to learn is not wholly defined by what an individualalready knows, but takes into account a potential to learn collaboratively.Learning occurs more readily in situations where individuals with similar “zones”are together.The three perspectives on adult learning provided ways to focus andinterpret the data. Four themes emerged from the data but because thetheoretical perspectives overlap in some areas, the themes are not discreet in thesense of being tied to only one. The following sections attempt to provide anunderstanding of adults learning with peers in the context of a self-help group.Ideology as the Frame of Reference for LearningThe ideology, or set of teachings of a self-help group, has been suggested tobe a major mechanism for the changes that occur for members in self-help groups(Antze, 1976). Lieberman states that it provides pathways “akin to the pathwayoffered by professionals as to how change can occur and what about the affliction166needs to be redefined” (Lieberman, 1979, P. 218). References to transformationand redefinition in the literature on self-help prompted interest in a possible linkto the writings on perspective transformation and transformative learning(Mezirow, 1978, 1981, 1988, 1991; Taylor, 1989).The ideology has been presented as the “knowledge base” of HOPE inChapter Five. The ideology is based on two central elements about cancer andcancer care. The first is that cancer as a disease is not always fatal even whenmedical treatments been exhausted. The second element is that there are a lot ofways to promote healing that a person can independently and interdependentlyparticipate in. Summarized as “self as participant in healer,” the ideologyprovides a frame of reference for the learning of the members of HOPE.They have a sense of, a sense of their own selves, a sense of their ownpower, their own ability to take charge again. They realize that they don’thave to be helpless and hopeless victims. They can become informedconsumers. They can become more knowledgeable about themselves, abouttheir needs, and can express what those needs are, what those wants are,perhaps more effectively to their loved ones, to their helpers, to their healthcare providers (V3, 236).In the early 1980s when HOPE was founded, these ideas were clearlycontrary to popular conceptions of cancer treatment and still are for some people.It must be noted that the popular conception is strongly tied to the medical modelwhich emphasizes physical and chemical interventions aimed at treating thephysical manifestations of the disease. Power is attributed to and assumed by themedical community for their “expert” scientific knowledge.Data support transformative learning which is defined as “the process oflearning through critical self-reflection, which results in the reformulation of a167meaning perspective to allow a more inclusive, discriminating, and integrativeunderstanding of one’s experience” (Mezirow & Associates, 1990, p. xv). The“learning includes acting on these insights” (p. xv). The data also suggest thatself-help groups help members to proceed to action.In the discussion of the forms of learning, Mezirow utilizes terms that arespecific to his theoretical work and they are presented here for clarity. The term“meaning perspective” is defined as “an orienting frame of reference made up ofsets of schemes, theories, propositions, beliefs and evaluations” (Mezirow, 1988, p.223), a “personal paradigm for understanding ourselves and our relationships”(Mezirow, 1978, p. 101) and as “the structure of assumptions that constitutes aframe of reference for interpreting the meaning of an experience” (Mezirow &Associates, 1991, p. xv). “Meaning schemes” are “made up of specific knowledge,beliefs, value judgments and feelings that constitute interpretations of experience”(Mezirow, 1991, p. 5-6).Significant change was not defined as a concept early in the study althoughmy knowledge of the relative significance of some outcomes had prompted theinclusion of the research question “What if any, are the significant changes thatmembers say are a result of participation in HOPE?” The data demonstrate thatmembers of HOPE did make significant changes and many were related to a shiftin their perspective or redefinition of certain ways of experiencing and living withcancer that were in alignment with the ideology of HOPE.As meaning perspectives are formulated through socialization, memberscoming to HOPE have a variety of original stances. Jarvis (1987b) suggests that168for some individuals the discontinuity between their current stock of knowledgeand what is presented in the socio-cultural milieu may be too great for them tohave meaningful learning. Occasionally individuals come to HOPE workshops andleave for this reason. For other members, there is variance in the degree to whichthey transformed their perspectives; for some the ideology was entirely new andfor others there was a familiarity with the beliefs prior to their joining HOPE.Although it is not reflected in the data, it can be assumed that some membersstruggle more than others to adopt the new beliefs to the extent that they guidetheir action.Mezirow (1991) suggests a frame of four forms of learning that placesperspective transformation at one end of a continuum. The data have beenorganized within this framework for the purposes of clarity and discussion. It isnoted that designation of the data to categories is somewhat arbitrary sincespecificity was not sought in the data collection. Sections which focus on a formof learning are introduced with a brief definition of that particular form.Four Forms of LearningThe first form is defined as “learning through meaning schemes” andrepresents learning within our acquired meaning schemes, or differentiating andelaborating meaning schemes (p. 92). The second form, entitled “learning newmeaning schemes” involves creating new meaning schemes within alreadyaccepted meaning perspectives (p. 92). It does not negate existing meaningperspectives. The beginning of questioning of assumptions as being inadequate to169a current way of functioning is the focus of the third form called “learning throughtransformation of meaning schemes” (p. 93). Transformation of meaning schemesis classed as a type of transformative learning along with the fourth form which is“learning through perspective transformation,” the essential focus of the work ofMezirow (p. 93).The general focus in this section is learning outcomes; the data relating tooutcomes are presented within the frame of four forms of learning. The datawould fit into the frame tidily only if the concepts had been used in a morefocused way to design the data collection. Instead, the frame is used to organizethe data as it fits best in order to demonstrate the differences and diversity of thelearning outcomes and their relatedness to the ideology of HOPE. As well, ithighlights the evidence of transformative learning.In order to more fully understand perspective transformation and itsapplication to learning in self-help groups, a discussion of some of the processelements of perspective transformation follows the sections on different forms oflearning.Learning within Meaning SchemesThe learning that Mezirow calls the first form produces outcomes within thestructure of existing meaning schemes. Many of the outcomes achieved bymembers of HOPE are related to changes made as a result of their adoption orincreased commitment to the perspective of “self as a participant in healing.”Examples of these outcomes, such as lifestyle changes, are included in this section.170The amount of stress in her job was a concern for Barb P. and she explainedovercoming it:When I wasn’t working I was doing my relaxation, . . . now if there is a dayat work that I am feeling particularly stressed out I’ll go out in my car andif I’m out doing my visits I’ll stop at the front of the road or stay in my carin the garage for 15 minutes--I’ll close my eyes and I’ll just do my relaxationfor 15 minutes. And that sometimes is enough to get me going again (L4,310).Bridget said:I did a lot of reading as far as diet is concerned and have actually changedmy diet drastically from being a meat eater. . . to being a vegan vegetarian.I have always known that exercise was important but I didn’t reallyknow about the effects of exercise on the immune system. So I have learnedthe importance of that. That’s very important to me. And certainly I havelearned to recognize stress, when I am under stress and dealing with it.You are never going to be stress free. But picking up on it and cluing inthat I am stressed (L2 482).Jane also experienced many changes as a result of what she first learned. Shestated:I try to do far more for myself now than I used to. . . . My diet, I changedmy diet. I am far more aware now of what I eat. And exercise . . . now Iwould rather be outside walking and connecting with nature and that ismore important to me (L8-123).Like many cancer patients at HOPE, Jim became aware of the frequency ofrecurrence of cancer even after “successful” treatments. He stated:One thing I picked up right away from Claude was maybe you are inremission but don’t throw away your crutches and yell “Hallelujah, I’mhealed” because 80% of the people with cancer have a recurrence. So theimportant thing is to build up your natural defences. And that is reallywhat I have worked on ever since my first HOPE workshop is to try andbuild up my natural defences both through attitude and exercise. Hikingand this sort of thing, cutting fire wood (L7, 121).171Jim also stated he listened to a number of stories of persons that had notbeen diagnosed when they first had symptoms or had waited to seek help for someperiod of time. From this he learned that:You take charge of your own treatment- -you don’t wait until the doctor saysI think you better have a bone scan, or I think maybe we better check thatout. . . . And I think it is important that you be aggressive with yourtreatment. . . . I take every test that I can to keep monitoring, to keep ontop of it and then if anything does start to act up, nip it in the bud (L7,430).Exyanding Meaning SchemesIn expanding meaning schemes, Mezirow speaks of “creating meanings thatare sufficiently consistent and compatible with existing meaning perspectives”(1991, p. 93). In other words, expansion and elaboration are within the existingmeaning perspective but some beliefs or attitudes may be changes. It must beremembered that for some members, learning of this nature occurs after a majortransformation of perspective. For Phyllis, it appears that her learning was morea development of new meaning within her existing meaning frames. Phyllis said:“It’s not so much what you didn’t know before you went, it’s confirming a lot ofthings you did know but in a wonderful way. Ala, the people who lead, are theleaders of HOPE, are inspirational really” (Lii, 150).While Glenda was telling about her experience of the introductory workshopshe asked if Claude had talked about “the gift of cancer” in the introductoryworkshop that I attended. When I said that he hadn’t, she told me about herexperience.172Also, one of the things I loved about the HOPE centre is writing down thegifts that cancer has given me. And first you think “This is nuts, what kindof gifts can you get?” and then when you start writing and you write andyou write and you write and you think “Man I am a way better person forhaving had cancer than I ever could have been before!” Then what Claudedid that I just loved too was he said “Now I want you to thank the cancervery much for coming and giving you these wonderful gifts. Keep the giftsthat the cancer has given you and you can let the cancer go.” And [I said]“Are you sure you can do that?” And he went, “Yes absolutely. You cankeep all those benefits that cancer has given you and not have the cancerbecause now you are aware, because now you know what you needed tolearn from the cancer.” And it just made so much sense that of course lifeis all about learning and as soon as you get it you can let the teacher go,you know. “Okay, I am going to do that--the teacher is going” (L9, 187).This statement provides evidence that her new view of cancer is an extension ofprevious beliefs: “I do have that belief, a very strong belief that this is ourlearning ground. This is when we are in flesh form and we can make choices thatyour spirit grows in this life and that is what it is all about is getting the spirit tosoar” (L9, 519).Barb P. talked about extending knowledge she used in her nursing practiceand applying it to herself.I have always thought of the type of nursing I do as [an] holistic type ofthing in the community with people, that it wasn’t just sort of the disease.I have to sort of think about the person as a whole, their social, their familyconnections, their community connections. But as far as me and my illness,I knew about it but I didn’t give it much thought because I really didn’thave any reason to until I got sick. And then the more I read about it andcame here the more I realized the importance of it. I always knew about it.Because it never effected me personally maybe I didn’t give any sort ofpersonal thought to it. So certainly that helped and it made me realize howimportant that you have to have it. Because you are sort of on a rollercoaster all the time, up and down and you have to have that emotionalsupport (L4, 249).173Changing Meaning SchemesAnother form of adult learning identified by Mezirow (1991) and classed astransformative learning involves the transformation of meaning schemes that arefound to be no longer adequate for understanding one’s experience.Jim, who had stated that when he was first diagnosed he “didn’t wantanyone to know he had this horrible disease,” said:After I got to know all these cancer patients and saw what exceptionalpeople they were, especially the long term survivors, I was kind of proud tobe part of the community. It changed my attitude completely. I was quitehappy to talk about it, about cancer (L7, 76).Jim was already familiar with the notion of helping yourself and had changed hislifestyle around diet and stress management. At HOPE he changed his attitudeabout expressing emotions. He stated:Well, I guess one of the things that I have learned from them is it doesn’tdo you any darn good at all to choke down your emotions and I guess thiscame out a bit at Cortez and at the workshops. Let it all hang out. If youfeel good express it and if you feel really sad it’s okay and if you want to cryand even if it is a man, cry. Get rid of it, let it come out. And I think thatis important not to suppress emotions when you are dealing with cancer(L7, 158).Changes viewed as significant to members tended to be personal. Bridgetmade changes in relation to her role in her family and her ability to express herneeds.I have learned to ask for my needs to be met and that is probably thebiggest thing that I got out of the HOPE workshop. Now I go off on ourweekend retreats. The old me, prior to my diagnosis, would never haveconsidered that my family could survive without me for a weekend. And Inever actually even saw the need. And now I often, oh, I just love to getaway on my own for the weekend. So that is a big change for me. Butdefinitely asking or setting limits on what I will do and what I won’t do;what I can manage and what is too much (L2, 502).174Perspective TransformationThe process of perspective transformation ends with the integration of anew perspective which will allow “a more inclusive and discriminating integrationof experience” and more meaningful actions (Mezirow, 1981, p. 6-7). This form oflearning is viewed as transformative and usually results in major changes inthinking, feelings and actions.The following examples of dialogue from conversations with members ofHOPE, point to some aspect of this kind of transformation. It is interesting tonote that feeling outcomes, such as hope and confidence, are often included alongwith the references to new ways of thinking or like phrases.Alex suggests adoption of a new perspective and relates several smallerchanges related it:That changed my life, that whole weekend--really, it changed both of us. Itwas just--I was almost euphoric for the rest of the week and I did change. Ichanged everything. I changed my diet, I stopped eating meat, got on avitamin program. I tried to eat natural health foods and it wasn’t alwayseasy but I did okay. And I got a hold of a psychiatrist and I did a lot ofchanges. I read everything I could- -took a year off work. . . . And I try to--one of my biggest problems I always felt was I can’t, you know, I kepteverything in. So I make an effort to talk now (L3, 40).Glenda lost one leg and a large portion of her bony pelvis as part of hercancer treatment. She said this about her workshop experience:It was like a light in the dark. All of a sudden you go “Yeh, there is hope!”They are so aptly named. It is just perfect because I had no idea that Icould fight back. I felt really hopeless so when they showed you thevisualization, the meditation and how to turn it around at night instead ofthe defeating self talk to positive talk--well--I was so excited (L9, 138).175In this passage she extols the changes she has made:It all made so much sense, it was just like opening a door. “Yeh, this iswhere I belong, of course.” It was almost like I knew that if I had a choicenow to go back and have my leg back and not know what I know, I wouldnot do it. I would say, “Un uh, it’s just not worth it,” I would much ratherhave the knowledge then the leg--so, yeh, HOPE opened a whole vista forme; just unbelievable! The fact that I ski better on one leg than I ever didon two and just things like ah, that I do volunteer work at schools. I go intothe schools. I just finished a whole week at a high school and talking tostudents there about smoking and cancer and it is just so neat and be ableto reach out and effect changes and people will come up to me and say “Youknow Mrs. S., I’m still not smoking!” It’s so neat--I just love it and I go tothe little wee kids, right from kindergarten. I start with the positive selftalk and I tell them about positive lifestyle choices and diet and things.Right from Grade 1, I hit all the schools in our district here and dokindergarten to seniors. And then I go in and I talk to different seniorcentres, lodges and things like that and women’s groups and they will phoneand say “We sure would like a guest speaker today,” and “Yep, you got it. Iwill be there.” It is really neat. I feel so passionately about this sort ofthing and it’s the ripple on the pond and the rock goes in and it spreads out.HOPE was the big rock (L9, 249).David has been a survivor since he was struck with polio at the age of oneand it left him with little use of his body from the waist down. After he received adiagnosis of brain cancer he decided to join HOPE. He first said he had been alittle anxious about participating in the workshop and then claimed two benefits:“I just really enjoyed it actually. I really enjoyed that and it gave me new hope:that I could beat this disease just with my own inner strength . . .“ (L5, 162). Hetalked about changes he made in the way he was living with his disability as aresult of his rethinking his life situation:So, I became a little more at ease with my disability. . . . Whereas, beforefor me there was fighting it a little bit, . . . still wanting to disregard it asmuch as possible. An example there was a wheelchair. My mother hasbeen preaching for years that I should get a wheel chair because I couldprobably do a lot more things maybe get into some sports and stuff likethat. I thought no way that is a step backwards getting into a wheel chair,176forget it. And I thought that and all of a sudden after I have been throughthis I thought “Well, yeh, I will try it. Holy smokes, this is excellent. Ishould have done this years ago.” I am not in it full time by any means butI can just get around a whole lot better. I can go over to the malls and stufflike that, wander around. Before it was just too hard and now it is a pieceof cake and a lot of stuff, I almost use it like a bike. You go out for a bikeride, I go out for a wheel and I am wanting to get into sports now.Pursuing getting into basketball and all kinds of things. . . . I want to beable to ski, I want to do basketball, I want to do tennis so I have all thesegoals now in sports because I am a sports fan and my family is quiteathletic but I have always been on the side lines and never been able to doanything. So that is the biggest thing (L5, 452).He also suggested he was able to focus his life more.As a result of not just getting well and beating the disease I have got somechanged attitudes towards my life as well. So it was a real learningexperience as far as that goes. . . . I have never been one to be able to haveany major goals or careers so I have just been floating around most of mylife and not really too much direction and just kind of said “You have to getwith it (L5, 387).During our interview Jane exclaimed that for her the HOPE workshop was:The best thing I have ever done for myself. I mean it. It really was. Iwent there and came out a different person, because for some reason thatwas for me. . . . I got so much out of it. Just what I needed and the wholething has changed my ways of thinking. You know I realized then that Ihad to do things for myself as well and not just sit back and think “Oh, it isnot going to happen to me again.” I had to more or less take more control,far more control. It turned my world around - it really did (L8, 61, 76).The ideology of “self as participant in healing” does not exclude receivingthe help of professional health care providers or traditional medicine. As Moyrasaid: “It wasn’t like we were disregarding the medical, it was like trying to gobeyond it, [we had] been told there was nothing that could be done” (Vi, 28).Marilyn described her experience like this:You can take control of your life, you aren’t at the mercy of the system.There are alternatives that you can work within the medical community. Ithelps to share and there are actual techniques - the importance of a healthy177lifestyle and reducing stress and techniques to reduce stress. The sharingexperiences and knowledge can be very beneficial (Li, 192).She also said:I actually have never really discussed what I do with my doctor. .. . I am avegetarian and she (doctor) knows that I have done lots of things but wehave never taken the time to discuss it. The only thing, I feel like I am ontop of it more, more in control. I changed doctors when I started to feelmore confident and when I started to feel better. . . (Li, 81).At the same time, “self as participant in healing” is a strongly held messageand the relationships between members and their doctors, who usually have theauthority in health care decisions, often shift.Commenting on her current relationship with her physician Jane statedthat she had changed:I learned to speak up more now and realize that we should get moreinvolved in our care and what kind of questions we ask. When I think backnow how I was when I was diagnosed I just sat there and everything theysaid was “it” and I never questioned anything. So, yes it has changed, I ammore assertive (L8, 225).Bridget reported this outcome:I have learned about using alternatives like naturopaths. And I never, Iguess with my nursing background, I never would have thought of going toa naturopath before. . . . I have learned to go look for things. Like my GPwhen I was first diagnosed wasn’t open to anything other than theconventional treatment. Anything I would ask him, . . . his pat phrase was“Nothing proven--no statistics.” So the old me, tied to my diagnosis, wouldhave left it at that. But the new me, because he wouldn’t give me what Iwanted, I went to another doctor. I didn’t change my GP, I stayed with himbecause I like him and I had a good relationship with him but I went toactually--Claude’s doctor (L2, 456).It is important to note that members may have had experiences of all fourforms of learning. They come to the self-help group for different reasons and withdifferent meaning perspectives. An example of this is provided by Marilyn: “1178started reading Siegel and Simonton and I tried to do meditation and I felt Ineeded some instruction on how to do it. I needed some help so that’s when Idecided [to join HOPE]” (Li, 23).The data relating to outcomes have been organized into the forms oflearning provided by Mezirow (1991). Because the learning is so connected withexperience the data could also be explained by models of experiential learning.The importance of experience in relation to the learning of members of HOPE willbe discussed within the next theme. But first, the process of transformativelearning will be used as a frame to present some data focused on processes.The Process of Perspective TransformationThe process of perspective transformation has been a focus of study forseveral years; Mezirow first proposed it in 1978. The recent publication of twotexts is evidence of the theoretical development since that time (Mezirow, 1991;Mezirow & Associates, 1990).A summary of the process has been provided in the literature review. Inrelation to the data collected, the two elements of the process which appear to bemost relevant will be discussed. Disorienting dilemma is the most common “firststep” in the process and critical reflection and critical dialogue are key elementsthroughout the learning process.179Disorienting DilemmaAlienation is the first phase of perspective transformation. A disorientingdilemma or trigger event results in a disruption in meaning resulting in analienation which demands attention and creates a potential for learning. Theseexcerpts of dialogue can be understood as examples of the disruption that canoccur with an experience of cancer. Bridget said:And I knew that I couldn’t do that, that I couldn’t just get on with my lifeand not make any changes because I felt sure that, urn, if I didn’t, a fewyears down the road, because I had seen it happen so many times- -peopleare diagnosed and [told] “Everything is fine, just carry on with your life”and that’s what they did and two years down the road they would have arecurrence (L2, 264).Glenda expressed her dilemma like this:Listen, I know I look alright and I know I feel okay and everything butduring the day I put on this brave front but at night every time the lightsgo off I lie there in bed awake all night thinking “I’m dying, I’m dying, I’mdying” and the morning the light goes on and “I’m alive, I’m alive, I’malive.” But it is no good, I said “I can’t go on like this,” I said “I just hate it,I feel helpless” (L9, 103).While it is suggested that the more traumatic dilemmas have greaterprobability for inducing change (Mezirow, 1981), there may be a critical upperlimit to the amount of dissonance that can promote learning (Jarvis, 1987). Someindividuals handle distress with denial or other psychological defense mechanisms.Belonging to a peer group can benefit individuals in distress in two major ways: byhelping the person reduce the stress through understanding and emotionalsupport and by providing solutions to the problem of concern.180Peer Group as Reference GroupCritical reflection is identified as an integral activity in the learning processbecause it is key to the person acknowledging the dissonance between currentmeaning perspectives or schemes and actual experience. Critical reflection is usedlater to help integrate the new meaning perspectives. It has been suggested thatthe activities of critical reflection and critical dialogue are fostered within areference group.Because reflection takes place in the mind, it is considered to be personal,but Mezirow (1990) states that the whole process of perspective transformation isinteractive and reflection is enhanced by the sharing and generating of meaningwith others. Mezirow suggests the following ingredients to foster criticalreflection:Role modelling, uncritical group support and solidarity; helping learners tolink self-insights with internalized social norms and to understand thatothers share their dilemma; and providing a secure environment thatfosters the trust necessary for critical self-examination and the expression offeelings (Mezirow & Associates, 1990, p. 360).Responses that included “thinking” covered a variety of topics. Marilynsaid: “I don’t think in my busy life I had stopped to think ‘What was I doing?’ Ihad dealt with a particular illness at the time through medicine and doctors” (Li,201).Jane talked about re-evaluating:I had to re-evaluate my life just like they say. I had to take a look at mylife. There was stress there, there still is and there always will be I’m sure,but it is learning how to handle that stress. And I did look at thingsdifferently. I thought about my married life where there have been lots ofproblems, . . . and we did separate for awhile and I tried to work on myself.181• . . and eventually we did get back together and it has been much better.Obviously there are still stresses and there always will be, you can neverget away from it. So in that way I tried to take a look at where I was andwhat I was doing with my life and I try and do far more for myself nowthan I used to (L8, 85).In the context of a self-help group, the group is also the medium forpresentation of the new perspectives needed to reframe the experience. Mezirowcontends that consensual validation of what is asserted is essential when there areno empirical tests of truth available (1990, p. 11). Study of the data reveals thatfor members of HOPE, knowledge is grounded and owned through personalexperience. Recognition of experience as the medium of learning and the test ofknowledge is an important insight.Experience as the Condition of KnowledgeKnowledge is defined as “the certainty that phenomena are real and thatthey possess certain characteristics” (Berger & Luckmann, 1967, p. 1).Information is not recognized as knowledge unless it has meaning and isverifiable. There are three conditions or tests for knowledge: experience,experiment and logic (Scheffler (1965) cited in Jarvis, 1988). It appears that themembers of HOPE may, at first, take beliefs in the ideology as rational knowledge,but they continually use their own lived experiences and the experiences oftrusted others to verify the beliefs. They also build, both individually andcollectively, a body of experiential knowledge of a practical nature. Thisknowledge is based on their own experiences of solving problems related to cancer.It can then be said that the epistemology of knowledge for the members of HOPE182is one of personal confirmation based on their lived, “moment-to-moment”experiences.Other writers (Boud, Keough & Walker, 1985; Burnard, 1988; Heron, 1981)agree that experiential knowledge can become propositional knowledge. Itemerges from the process of reflecting on and integrating experiences with thebeliefs initially taken as rational.The members also exchange very practical information about dealing withthe problems and concerns related to cancer. This knowledge is viewed aspractical “how-to” by Borkman (1976) and is the basis of her proposal ofexperiential knowledge as the knowledge base of self-help groups. She has usedthis quality of the knowledge base of self-help groups to distinguish their provisionof care from professional care and informal care. This kind of practical knowledgewhich is learned from experience by a trial and error process is also evident in thedata. These kinds of knowledge; “how-to” and propositional are qualitativelydifferent but can both be classed as experiential knowledge because of theimmediacy of the experience that is part of the learning process.The learnings of the members of HOPE centres on cancer. It is focus oftheir concern and is often in the forefront of their experiences. Julia said “we arejust human beings, we cannot stay together about the whole cancer business. Ithas always been in the back of my mind” (L6, 415).Participation in the self-help group is the medium of learning. The peergroup members share their experiential knowledge and help others learn bycreating vicarious experiences they can identify with. The level of trust in the183group is enhanced because of the common bond that grows out of thecommonalities of experience. The data in this section is organized to emphasizecertain aspects of experiential knowledge. They are: experience recognized asconferring authority, reflection on ideas in the context of experience andpropositional knowledge and practical knowledge. The latter two are varieties ofknowledge that can also be experiential.Experience as AuthorityDavid provided some dialogue about connecting with members in the groupin a way that made their knowledge believable.They all give examples of what they have been through. So first of all itgives you the feelings that you are in the same boat or you were, . . . thesame level. So right away you are not listening to someone who has someinformation and says “Yes, if you have this disease and you do these things,you will get well.” You are talking about people who have first handknowledge, the pain and all that stuff and you are just on equal footing. Itis just like a friend or family member that you are confiding in and so youtend to believe that it is true a lot more than otherwise. That’s what, Iguess the biggest thing for me was that these people had been there. .But just being in that group of people that had the disease like I did andbeing with some people who were very knowledgeable of techniques to dealwith it and who had been there, that whole experience just gave me theconfidence and the drive to carry on. . . . [The learning is different] becauseit is based on life experience (L5, 354).Bridget provides another example of this trust in the experience of like others.She felt encouraged to try a naturopath after being in a group with someone who“was really, really toxic and he went to this naturopath and he said he came outfeeling fantastic after he had gone through the detox[ification]” (L2, 177).184Reflection on ExperienceReflection on experience is a key step in the process of “experientiallearning” as it is defined by Kolb (1984) and several others (Boud, Walker &Keough, 1985; Boyd & Fales, 1983; and Keeton and Tate, 1978). Barb P. talkedabout the process of evaluating the experiences of others and integrating onlysome into her own frame of reference. The outcome of this experience is arealization that because she had choices, she had gained a sense of control.Some of the things that they talked about, I thought, were really kind ofstrange because of my medical background. “What is this?” But the more Ilistened to people talking and I started to think, well you know, “Oh, okay,maybe I could try some of these things.” . . . There were certain things Iaccepted and certain things that I couldn’t. And I thought, “That’s fine, Iam making the choice.” And this is where I started to feel that I could dosomething about it because I had some control, I was able to make some ofthe choices as to what happened. I think I heard all the things other peoplehad tried, I sort of gathered all this information and then I chose what I feltwas right for me and that is what I tell people now. I say, “Find out whatis out there and you choose what you feel comfortable with.” Not everybodyfeels comfortable with the same thing and you have to make that decision(L4, 95).Part of the process of developing experiential knowledge is reflection onexperience. Reflection involves exploring, mulling over and evaluating experiencein order to lead to new appreciations and understandings (Boud, Walker &Keough, 1985). It is needed to integrate the experience with other knowledge andgive meaning to the experience. It is always in relation to self.In the workshop setting, members are asked to think about their beliefs andtheir experiences, for example, to identify the stressors in their lives. Membersare also encouraged to pay attention to inner experiences such as body sensationsand to learn ways to better access information in the unconscious, such as keeping185journals of dreams or feelings and practicing meditation. Alex has had time toreflect on her experiences and now says this:Well, I feel that if I had listened to myself maybe I would have insisted thatthey take that lump off that they didn’t. Because I kept having dreams andI have had lumps in the past but I never had dreamt about it so I thinkthat I should follow my own intuition (L3, 201).In the next passage, David is talking about a physical manifestation that assistedhim in believing in the power of visualization.There was a example of using visualization, too. I’m not exactly sure whatit was, something about thinking of your radiation as a gun or somethingshooting bullets at your tumour and you would visualize the bulletsshredding up the tumour tissues and getting rid of that or something closeto it. So I did that one day on the table during my radiation and imaginedthat was what was happening and I imagined that for the length of timethe radiation was on- -and it had a buzz so you knew when it was on andyou knew when it was off--so all the time, I think it was for 20 or 30seconds. So all the time it was on I imagined it was shooting particles intomy tumour and it was destroying it and it was kind of a powerful thingbecause I kind of went away from it believing that it actually had. I did feeldifferently. I got kind of a mini seizure while I did that so I thought, “Oh,something is sure going on” (L5, 188).Marilyn talked about attending a HOPE workshop after having someradiation treatment for bone metastases from breast cancer that had beendiagnosed and treated two years earlier. She began by saying: “I had a lot oftreatment and nothing seemed to be working” (Li, 19). She stated that as a resultof attending a workshop:I had the attitude from HOPE that I could take control. I started to changeother things in my life. I was going to be teaching half time and I felt, “NoI wouldn’t take it (chemotherapy) in August” and then in September when itwas again scheduled I thought “No I’m not going to take it, I’m going to getbetter.” I changed my oncologist, who I didn’t like and then they delayed it,sort of went along with me. It had slowed down but it stifi wasn’t inactive.By my third appointment, they began to see the cancer activity had droppeda little bit and then by December it was inactive and in the normal range so186I never did have the chemotherapy. But I felt that I had decided when Iwas getting better and know now I can tell when I am well and whensomething is wrong (Li, 57).It appears that Marilyn had validated her inner experience with the tests providedby the cancer agency. By using these various ways of connecting with theirexperiences, members generate personalized knowledge. There is some data thatrelates to the two kinds of experiential knowledge: propositional knowledge andpractical knowledge.Proyositional KnowledgeGlenda related an example of a way that propositional knowledge, in thiscase “positive thinking helps the healing process,” can be grounded withexperience.A lecture on positive thinking is really not much. It doesn’t have a lot ofeffect if they haven’t had cancer because you can talk all you want aboutpositive thinking but if you don’t know how to focus it to your own fears itis not going to work. Positive thinking “I am going to have a good daytoday” but you have the pain to deal with, you have got obviously a lowerlevel of energy and all sorts of things that the normal person doesn’t have.So when you focus on cancer patients needs and you are in a group withcancer patients- -Claude was able to bring that out that- -your needs aredifferent than the normal persons needs. You need a nap, take a nap (L9,327).Barb P. noted how personal experience brought new meaning to knowledge shealready had.I learned a lot about new age medicine and the more I know about it, themore I know that it is old and I am happy to see that it is now beingincorporated into medicine, western medicine more and more. Because Ireally believe that there is a lot to it. But I guess it took a personalexperience to realize the importance of it (L4, 349).187Jim provided another example of taking the ideas of others and learning byapplying them himself. After reflecting on the experience Jim is able to claim theknowledge as his own and use it confidently in the future. His own experience ofgrieving in a new way has personalized and grounded the idea of not suppressingemotions. He says this:I guess one of the things that I have learned from them is it doesn’t do youany darn good at all to choke down your emotions and I guess this came outa bit at Cortez and at the workshops. Let it all hang out. If you feel goodexpress it and if you feel really sad it’s okay and if you want to cry and evenif it is a man, cry. Get rid of it, let it come out. And I think that isimportant not to suppress emotions when you are dealing with cancer (L7,158).His knowledge of the value of expressing emotion is no longer propositional, basedon what he has heard from others. It is now based on his own experience atCortez and a later experience when his dog died. He said, “I would have gladlycried all over the place when I lost my little dog but I really grieved for aboutthree days. It took me a while to get over it. And that’s it, if you don’t then ithangs on for months” (L7, 169).Practical KnowledgeThere are also examples of the development of practical know-howknowledge which include references to experience as part of the learning. Thefollowing example is an excerpt from the HOPE newsletter (Summer 1993) writtenby Donna. “I would like to share my recent experience with radiation treatment.I believed that it was important to keep stress to a minimum so I decided to be188driven for treatments.” However, when she had driven herseff to her “check in”session she was told her treatment could begin immediately:I decided to start the treatment on the same day because if I refused, itwould be delayed by one week. The pharmacy supplied me with Gravol andI tried to relax in the waiting room using progressive relaxation techniques.After treatment I became quite nauseated and when I reached home, had totake additional Gravol and go to bed. For the second treatment I wasprepared. I put on my sea-sickness wristbands, took a Gravol, took myWalkman with relaxing music and had my son drive me to the CCABC. Idid not feel any side effects. I listened to my music in the waiting room aswell as in the treatment room during radiation. I felt quite relaxed andwelcomed my treatment. There was no nausea and no need for additionalGravol. For the third and fourth treatments I eliminated the Gravol but dideverything else the same. Again, no nausea! (HOPE newsletter, Summer1993).She concludes by saying “I hope that by sharing my story, others will beencouraged to prepare for their treatments so that side effects wifi be minimized”(HOPE newsletter, Summer 1993). Donna has continually danced between herown experience and the prior knowledge of radiation side effects. The trial anderror approach worked well for her and she is now willing to share her experiencewith others through the newsletter.Claude, who was the first proponent of many of the beliefs that havebecome HOPE’s ideology, has stated clearly that he “knows” certain things fromdoing or experiencing in certain ways things he had heard about. An example isprovided in his book.From my reading, my personal experience, and the members [of HOPE], Iam convinced that the radiation worked for me because I was physically,mentally, and emotionally ready; that I had strengthened myself in everypossible way. For my body I had added extra vitamin C because of theextra stress of the radiation. . . . I was especially ready mentally, and aswell as the regular visualizations that I did three times a day, I had devisedone to use . . . during actual treatment. . . . When my blood count went189down, I visualized my bone marrow as a huge factory turning out billions ofwhite blood cells. . . . With the help of a local doctor and a biofeedbackmachine, I learned to relax myself totally before and during the treatment(Dosdall & Broatch, 1985, p. 70).Borkman (1976) raised a question about the relationship between thedevelopment of experiential knowledge and exposure to knowledge from sourcesthat had not been helpful with the problem of concern. For cancer patients thismeans that the authority for knowledge may no longer remain with professionalhealth care workers. Alex describes what has changed in her relationship withdoctors:Not the way I really relate to them [doctors] but the way I hear them. Youknow I used to think they had all the answers and held them on pedestals.They are just people--they are not always right. Sometimes I know what isbetter for me (L3, 185).Authority and credibility of knowledge is attributed to those who share theexperience of cancer rather than those who have “expertise.” This does not meanthat professional information is discounted. It is, however, taken in a differentperspective.It is evident that experience is a key element in the learning experiences ofmembers of HOPE. Members use their experience to both generate practicalknowledge and confirm propositional knowledge. Their experience is also thebasis of their connection with other group members. After a level of trust isestablished, their own experience is extended by the experiences of members inthe group. Others’ experiences in the groups are viewed as credible because of theshared experience of cancer and not because of “expertise” about cancer. The190knowledge of others has credibifity based on commonalities of the experience ofcancer. It is personalized and owned when grounded by one’s own experience.There is another important element of learning that is generated from theexperience of being with peers: the affective nature of the experience of learning.Experience as it impacts learning is viewed to be holistic. Experiential learning“involves the integrated functioning of the total organism - thinking, feeling,perceiving and behaving (Kolb, 1984, p. 31). All aspects of learning are integral.However, some examples of data that reflect the affective dimension have beenmomentarily separated in order to highlight the significance of this element in thelearning experiences of members of HOPE.The Affective Dimension of LearningThe importance of the affective dimension of learning surfaced in study ofthe data. Feelings are often referred to in strong terms and frequently thereferences are intertwined with dialogue about practical knowledge or new beliefs.It appears, therefore, that attention to feelings is an important aspect of thelearning process for members of HOPE. The perspective of experiential learningexplicitly refers to attending to feelings in the learning process. As discussed inthe earlier section on experiential learning, this dimension serves the purpose ofreducing barriers related to strong feelings that need to be attended to beforelearning can happen. Also, feelings are used as markers in the learning processfor evaluating and integrating experiences.191The affective dimension is also important because the “good feelings” thatresult from being with peers helps to build the trust that is essential in taking onthe experiences of others as your own. Emotion is already a large factor in theexperience of cancer. It is also clear that in the context of a self-help group, a lotof relief and emotion result from connecting with similar others. Feelings ofequality, of camaraderie and of safety were commonly expressed. Glendaexpresses her excitement over discovering HOPE:So it was kind of neat when I went and I found out that everyone was therefor the same reason. They wanted to find a way to fight back, they wantedto find a way to help themselves, and HOPE offers them a choice. Like howto help yourself, and help yourself positively every day. It is just so perfect(L9, 433).An example of how, in the learner’s experience, the cognitive and affectiveelements of learning are not easily separated and in fact are dynamically linkedwas provided by Barb P. She stated:It definitely helped, very definitely helped. I don’t know what I would havedone without them because they gave me hope, they gave me theinformation to fight, to want to fight, the support that you need, theemotional support. Because you need the medical but you also need theemotional. And I think you have to get the emotional from people who havegone through it. . . . So I feel that I got a lot of help from the people here,and gained knowledge from them and support, just in general everything,But certainly emotional. But also information too, that I maybe wouldn’thave known about, you know (L4, 238).Another example of the different facets of experience being expressed almost asone was provided by Phyffis. She said:You realize that there’s a lot of hope, and ah, I think I knew right there atthe first workshop that this was going to be my way of looking at things. .[I learned] the belief that everybody can help themselves. Some to a muchgreater extent than others but there is help inside of each person if theywant to reach in and get it. And it’s not a religious belief. . . . I have192religious beliefs and this is apart from that. . . There again you get thefeeling it’s going to be okay, that there is hope for everybody (Lii, 62, 131).Marilyn declared that “After the workshop I was on a real high and felt that I wasgoing to be able to beat this which before I didn’t have that expectation” (Li, 267).Some outcomes are expressed in feeling terms: empowerment and hope wereexpressions frequently heard. This is not a surprise since Barbara, one of thestaff persons, stated that the mission of HOPE is “to help people with cancerempower [italics added] themselves to take part in their own healing process” (V3,13). Avril stated this outcome: “Well, I think that we had that same hopefulattitude that there is--that we felt empowered--that there might be something thatwe were able to do to change that prognosis. . . . We applied the meditation thatwe learned in the workshop, especially Maurice” (L1O, 512). Claude said thisabout his attendance at the Simonton workshop: “Most important of all, I cameaway from the seminar feeling that I was able to do something to help myself(Dosdall & Broatch, 1986, p. 24). Bridget’s comments fit with this perspective.She said: “Our bodies have healing powers in the mind/body connection. I guessit, you know, is empowering. They help us to empower ourselves, [that] isbasically what I feel HOPE is there for” (L2, 330).Many of the members who were interviewed mentioned that they hadlearned to have hope. It was also evident in data collected at the workshops.Participants in a recent workshop stated: “I learned that there is hope even whencases are extremely advanced” and “I learned that there is hope, but it entails alot of work and commitment.” It is believed that a sense of hope is an outcome193that feeds in a very positive way into the learning process as members work tobuild their experiential knowledge.A sense of confidence is similar in nature. David said:Everyone, Maggie, Barbara and Moyra, and they are all really healthylooking, vibrant and full of energy to do what they do. So I thought, thesepeople do it--so. And all their cancers were serious ones and ones that couldspread probably easier than mine . . . and they were just full of life. Soright then it kind of gave me confidence” (L5, 289).It is believed that the spiritual dimension of learning is also important butthere were few explicit references to it. Examples of Glend&s experiences thatcould be placed in that category have already been given. Bridget related viewingher theological beliefs:I have certainly made a lot of, urn, changes in my life: lifestyles and outlookand attitudes and, urn, I guess the biggest growth would be spiritual. Inever gave much thought to my spiritual side before I was diagnosed. . . . Iguess when you are faced with your mortality you start thinking about, youknow, “What is there?”.. . Heaven and hell are here on earth and I think itis how we lead our lives (L2, 189).Moyra said this about her growth over the time of her involvement in HOPE:I certainly feel a shift in the last thirteen years from feeling the same aspeople who are not well and again that is not meant as a put down I justfeel at a different level not really up or down but a different place. And Ithink when we help ourselves that is going to happen. You can’t stayalways being the sick person or the super cancer survivor. You have togrow and change but we can still use whatever stage that we are in toassist people. (Vi, 367).These expressions of the learning experiences of members of HOPE portray thedepth of experience of learning associated with cancer and cancer care. Theholistic quality of the learning is demonstrated by the mixture of affective,cognitive and spiritual learning.194There are other examples of aspects of the learning experiences of membersof HOPE that demonstrate the importance of the affective dimension of learning.Some have been left for the next theme because they are so much a part of “beingwith peers.” This is especially true of the section “being encouraged and gettingsupport.” Many of the experiences discussed in the section “being with peers” canbe viewed as outcomes but are considered more as processes in this instancebecause they appear to have a strong influence in the ongoing learning.Being with PeersParticipants were asked what they thought helped them learn. Several ofthe data seemed to be grouped best by the theme “being with peers.” Mutualassistance is based on the element of a mutuality which results from sharedexperiences. Therefore, the findings are not unexpected. In fact, all of theexperiences of learning at HOPE related in some way to learning with peers. Theexamples of experiences in this section are demonstrative of the processes withinpeer groups and illustrate the strengths of this context.The value of learning with more capable peers is already evident in datawhich relate to outcomes. It is conclusively a most dynamic influence in thelearning experiences of members of HOPE. Barbara, one of the paid staff atHOPE, talked about the value of participating in the group when she first joined:I felt that was really, that was the most important thing-- I think for me tocarry on, continuing with, urn, like with ongoing exploration, ongoingmeetings, ongoing contact was really important for me. So that was themost important. So I had this six week follow up course just after I did theworkshop and that wasn’t enough. I just had to do another six week one195after that. And then my volunteering started. It was really important tome to maintain that contact. So I think my contact with the people that Imet at HOPE, that was the most important thing that I did. That was themost different. That was the biggest change in the things that I was doing(V3, 169).It could be argued that some examples of data could have been placed inother previously developed sections. In fact, some references to processes havealready been explained in the other sections. The material has been organized sothat the data are linked to the theoretical writings on adult learning.The context of a self-help group provides a holistic and dynamic set ofactivities that can easily be viewed as a community of social practice. This view isdescribed by Lave and Wenger (1991) as situated learning. Situated learning isunderstood via the concepts of legitimate peripheral participation and zone ofproximal development. Knowledge is believed to be socially constructed andlearning occurs through participation in a sociocultural community.The data in this section have been placed in categories that are labelled:“sharing” (listening and talking), “associating” and “being encouraged and gettingsupport.” Activities outside the peer group but considered to be interrelated areclassed as “practicing” and “taking action.” Reflections by members demonstratedother processes performed independently of the group. “Thinking and evaluating”was already used as a section for examples of ways members’ activities supportedtransformative learning. A few examples of comments that demonstrate the valueof being peers precedes the other presentations.196The Value of Being PeersMembers of self-help groups identify themselves as peers on the basis of theexperience with a problem or a situation that they have in common. The membersof HOPE that were interviewed were asked how important the peer interactionwas to their learning. One person rated it as “quite important,” all the rest saidit was “very important.” In a recent workshop, participants were asked what theyliked best about the workshop. Some of the answers were: “meeting other peoplein the same situation,” “being in a group where we had experiences in common”and “comradeship.”Marilyn related the importance of being with peers:I particularly liked the fact that people have gone through the sameexperience. I did go to the Cancer Agency for an evening support group forCancer patients. I didn’t like it at all. I went with my daughter and it wasconducted by a social worker and a nurse and they seemed removed fromthe situation so I thought they didn’t really seem to relate to the agonypeople were going through (Li, 60).Glenda said this about being in the group:It was really, really important just to hear I wasn’t crazy, that my fearswere legitimate, that I was afraid of dying so were they; they couldn’t sleepat night, neither could I. Everything was so much the same. It was sowonderfully reassuring to know that I wasn’t alone, that I had company inmy trauma and that everybody with cancer felt the same hopelessness tostart with. That fear was something else, boy! (L9, 367).SharingBeing with peers involves a two way process of listening and talking. Thiswas referred to as “sharing” by several members. The listening was described asbeneficial because not only do the members hear about other’s experiences, their197pain and their joy, but they also get information on new ways of coping withdifferent problems. They also get information about treatments and techniquesothers have used (both traditional and alternative) and perhaps most important:new ways to think about cancer.ListeningThe beliefs of HOPE are very holistic in nature and include a considerationof care that goes beyond the commonly accepted medical treatments and involveshelping oneself. New members do not just hear new information. They hear newways of thinking about cancer and about healing. These ideas are expressed asthe ideology of HOPE which is “self as participant in healing.” Exposure to newideas is a critical aspect of adopting a new perspective (Taylor, 1989). Therelationship of ideology and transformative learning has been discussed earlier inthis chapter.When asked how it was that a group of people with cancer were helpful,Phyllis said: “I don’t know how it does but it does. When you listen to otherpeople’s experiences--by doing that you learn a lot about yourself. Your thinkingmay be right along one line and very wrong along another line and you’re able tobalance out as you listen to other people” (Lii, 315).Bridget attended a HOPE workshop and several information evenings. Shealso read extensively. In her words: “A lot of this information came throughcoming to groups at HOPE, from the actual workshop, from talking to otherHOPE members, what they were doing for themselves” (L2, 488).198TalkingThe “talking” part of sharing is also valued. Marilyn discussed what kindsof things are shared in the group:Changes you make in your life, how you are dealing with situations. Just totalk about it helps you deal with the situations. Just verbally expressing itsometimes makes you commit to the changes you have been thinking about.In the past when I have made a decision if I have been thinking about itfor a long time and I actually open my mouth and I say this is what I amgoing to do then I will do it. . . . you sort of have more tendency to followthrough on what you work out in your mind (Li, 140).Another important part of talking with peers is that you are more easilyunderstood. Barb P. said that one of the good things about coming to HOPE was“knowing that there were people here that you could talk to, that you could openup to” (L4, 343). This desire to talk about one’s experience with cancer and to beunderstood is paramount for most cancer patients.Moyra stated after one of the workshops that the reason they like to workin groups is because when members tell their own stories and listen to others’stories, their fear and anxiety tends to be reduced. Positive feelings are alsoengendered in this way and are viewed as integral to the learning process. Anatmosphere conducive to sharing is considered important. Moyra also stated thisabout facilitating the groups:Also, I think because I made a lot of mistakes and had a lot of difficultiesthat it helps people to hear that and I think perhaps my willingness to tellabout some of the things that have been very hard in my life helps put theother person at ease and does make them on the same level as a peer (Vi,404).Talking is usually limited to telling one’s own stories. There has been a priordiscussion of the sense of the leaders to not be prescriptive but rather facilitative.199One of the members also expressed this concern.You have to be careful about giving advice because people are working itthrough. So it is sometimes hard to not say what is obvious like . . . “Whydon’t you do this?” when the person is different and has to come to thatconclusion herseff. It is a learning process (Ll, 151).Being Encouraged and Getting SupportThese elements of learning would have been appropriate in the section onthe affective dimension of learning but have been placed here to provide acomplete picture of the experience of learning with peers. They also could beclassed as outcomes but are viewed as process elements because of the way theyare expressed as meaningful in the ongoing process of learning. Marilynespecially appreciated the encouragement and support she received.It is more encouragement and support and I think the expressing of yourfeelings and your plans and when things are down, to be able to tell peoplewho understand because they have done the same thing or gone through itor have comprehension. Who else but somebody that goes to regular cancerappointments knows how the aches and pains develop before you go, whichall of us go through. When you share that and you talk about how theydisappear afterwards, we can all relate. Where someone who hasn’t gonethrough it can’t imagine how you are having aches and pains which youthink is cancer before you go and two days later it has disappeared (Li,164).Support is emphasized as an important part of cancer care because of thepositive value placed on expressing feelings. The main reason that cancer patientsare encouraged to bring a support person to the workshop is so the role of thesupport person can be highlighted and enhanced. During one of the workshops,the leaders did a role play on active listening and then had the participants do a200practice session. The intention was to improve the ability to communicate feelingsrelated to cancer within the supportive relationship.The support persons in the workshops also receive the benefits of sharingactivities. In most workshops, there is a session when the large group is split, andthe support persons have an opportunity to discuss their difficulties and concernsamongst themselves.Another benefit of having the support persons at the workshops is that theyare exposed to the ideology of HOPE and often gain a different perspective of theexperience of cancer. Marilyn stated:That was the wisest thing I did because my husband participated with meat the group and this was absolutely essential because be now has anunderstanding of it. He was not into any psychology even though I had adegree in psychology, he figures it is all garbage. He doesn’t have any bentto understand anything psychologically. He agreed to go if I wanted him togo. He even acknowledges that he got a lot out of it and I get continualencouragement from him to keep doing my meditation and greatencouragement to go to my support group. I feel without him going to theworkshop he wouldn’t have the understanding how important it is to me. Ithink it is absolutely essential to have your support people go with you (Li,102).Bridget talked about having her husband with her: “Just that he was actuallythere with me and felt comfortable. . . . he didn’t really see his role in coming,once he was here he enjoyed it” (L2, 425).Encouragement and support also come in the form of a permission withinthe group to have ideas that are non-traditional. Alex said: “They are very openand don’t look down on anything you try and I think they would support you.”201AssociatingAssociating is a term chosen to enclose the more social aspects of being inthe group. Jim said this about the group: “I found them so inspiring and I foundthem such exceptional people that I was really attracted to the whole gang thereand just didn’t want to lose touch with them so I made sure I didn’t lose touch”(L7, 58). He attended several group events and said, “I guess really, more thananything, the greatest benefit to me is the people I think. You were at Squamish,right? They were a great bunch. And the gang at Cortez were really anexceptional bunch of people and I just enjoy being a part of this community” (L7,177).Phyllis also said she enjoyed the association with HOPE members.Positive people, positive thinking and, ah, they are so much that way andmost of the members are that way, that you, it rubs off. . . . That’s whatkeeps me going. I can’t go as often as I’d like because of the distance but Iwill always feel the connection (Lii, 308).Another aspect of associating is seeing the possibility for living a normallife. Moyra states “they can have fun here and humour and laugh about it and itis perfectly permissable to have a good time though you may be ‘dying’ or verysick” (Vi, 632). When talking about the workshop she attended, Alex said: “Thewhole weekend you are with people who are in the same situation and we werelaughing and having a good time and laughing at ourselves, too. I think that justshowed me a few other roads I could go down” (L3, iii).Inspiration is also an outcome that can be viewed as a process because it isexpressed as having a positive influence such as “getting your batteries recharged”202(L2, 386). Bridget reflected on her view of being around cancer patients, whichwas in contrast to her husband’s. He had said he would not choose to be aroundpeople who had cancer and Bridget replied:“But I had cancer and you’re around me.” He said, “It is not the same. Idon’t know how you can be around them.” And I said, “Well, they reallygive me a lot of strength.” Because you see, I mean, Ben, I remember onetime we went on the old Baden Powell trail. It was quite a long climb andhe only made about half way and he and his wife went back and waited forus. It was incredible! I mean this man was really, really sick and he diedjust a few weeks later. But he was out there living. You know, instead ofat home waiting to die. You know, it is really--the word is on the tip of mytongue--inspiring. Very inspiring for me and like I said, it is like gettingyour batteries recharged (Li, 386).Other processes that appeared in the data were activities that could happenoutside the group as well as within it.Practicing and Being InvolvedIntegral to the ideology of “self as participant in healing” is the notion oftaking some action to support the beliefs. Through his observations and ownexperience Jim has come to a conclusion about the necessity of effort.All you will ever get out of it is what you will put into it. And you have gotpeople who aren’t prepared to get into self-help and make sacrifices to putout efforts to survive. I sometimes wonder if they really want to live someof them. Really. But I think that is the key, whatever you are involved in,support group or workshop, whatever. You only get out of it what you putinto it and people who come out to the workshops like this one thisweekend, if they don’t get in there and participate and get involved, if theyjust sit back and wait to be healed, they ain’t going to be (L7, 343).Barb P. discussed trying a variety of approaches:And I tried all sorts of psychologists, psychiatrists and support groups andyou name it I think I have tried it all. Some I probably benefited from to203some extent. Some I may have for a while and then didn’t and somemaybe I didn’t at all (L4, 133).Barb also read book. There is an important point that has not been madeyet. When books purport beliefs congruent with the ideology of a group, or if theyprovide other ways that readers can identify with them, they in a sense become anextension of the group members (Brufee, 1993). Barb P. talked about herexperience reading recommended books.I think the first book that I read was “Getting Well Again” by Simonton andthat had quite a profound effect on me and that started me. And thatprobably is the book that I remember the best because it is the first bookthat I read. And I was identifying with myself all the way through thatbook. I lent it to somebody and I wish, I can’t remember who I lent it to butI didn’t get it back and I really regret it now because I had underlines andstars and crosses and all sorts of things because I could identify with somuch in that book. And it really boggled my mind and after that I startedto read more: Claude’s book, Siegel and LeSban and all sorts of others.That book probably, really because it was the first one, stands out becauseit made an impression, it really did. I thought it was an excellent book (L4,267).David’s experience is similar:Simonton’s book I read- -I think I read that after I started the first sessionwith HOPE because it was one on the reading list and I read that and thathelped me quite a bit as well and the HOPE’s basis of what they say isbased on Simonton’s thing anyway so they went hand in hand. They wereboth very similar to what they were trying to say or exactly the sameactually so all these things, visualization--I never had done that before withanything so I did that this time (L5, 174).Newcomer to VeteranThere are some outcomes described by the members that relate to ways thatthey became involved in the practice of leading other groups or volunteering toorganize activities related to HOPE. The phenomenon of movement of members204from a position of newcomer to one of veteran is essential to the learning withinthe context of self-help groups because it is the veterans that present the ideologyof the group to the new members. From the perspective of transformativelearning, veterans have adopted the beliefs that form the ideology of the group.This phenomenon can also be explained from the perspective of experientiallearning. Veterans are viewed as having accumulated experiential knowledge overa period of time from dealing with the problems of concern that is central to thegroup (Borkman, 1976). All members continue to build their experientialknowledge but it is recognized that the veterans have developed confidence intheir knowledge base as they have integrated their own experiences with it. It isbelieved, however, that this phenomenon is best understood through the conceptsof legitimate peripheral participation and zone of proximal development aspresented by Lave and Wenger in their work Situated Learning: LegitimatePeripheral Participation (1991).As a way of understanding learning, the concept of legitimate peripheralparticipation encloses the notion of learning as being part of a social practice. Itsuggests multiple and varied ways of being located as a participant in this socialpractice from a peripheral position to one of centrality. Initial membership isnecessary but other factors influence the progression.The zone of proximal development is a concept which further explains thedifferences in movement. It defines the potential for development as thedifference between current problem solving ability and potential for learning.205Potential for learning is defined by capabilities to engage in problem solving withteachers or more capable peers (Vygotsky, 1978).Excerpts from the interview with Maggie are presented to discover moreabout the transition of newcomer to veteran. She has been involved with HOPEfor nine years is now a paid staff person. She began by saying:We all know we are going to die someday but we never think it is going tohappen tomorrow or whatever. But when you are told, “Yeh, this is definitely growing and statistically there is no hope for you,” then you have tocome to terms with the fact that you are going to die and that is what I did.But then, when I found out the idea that what we thought, believed, had aneffect on the physical growth, then that concept was so exciting to me that Ibelieved that I could make an effort to try to stay alive and “Yes, I am goingto die one day, but not right now” (V2, 292).Maggie related her enthusiasm for the concept of the mind/body connection andthe influence of the mind on the physical body.You have some control over the course of the disease perhaps. I shouldn’tsay “perhaps” because I do believe you do. But learning that there is aconnection between the mind and the body, where the emotions,psychological health and the physical body- -because most of us havedivorced that. For 50 to 75 years we have divorced them, kept themseparate, either you’re mentally ill or you are physically ill and not realizingyou could be both. And learning that there are things that they can do tohelp themselves despite what may be a not a very good diagnosis (V2, 216).Maggie began to talk about some of the factors that helped her believe in themind/body connection and it is evident that she has paid attention to her ownpractices and experience, including her doubts.The fact that I was well, that I was still well and I really believe in theconcept so the more I voiced the concept out loud the stronger it becameinside me so it reinforced my own belief because as you know this is noteasy to do - we are trying to change patterns of a lifetime and you can beginto doubt. I know that I have doubted my own ability for a long time. Ihave doubted because I took orthodox treatment in 1985 and began to doubtthat I had anything to do with getting well. When I started to come to206HOPE I realized that yes, I had. . . . and then when I had a recurrence in1989 that was really quite serious, because how can I tell people what Ibelieve what I can’t seem to do myself. And that was really hard. But in away it made me more human. Yes, and it made me more patient withpeople that yes, this is a difficult thing to do and also this time I chose notto do [traditional] medical treatment at all and so I got well again and sothat was a big reinforcement, that I was definitely on the right track sotherefore the confidence then was “Yes, it is okay for me to talk about, thatthis is possible” (V2, 406).Maggie says her involvement happened in a gradual way. “So that was how, itwas sort of gradual, I got to know the ins and outs of the whole thing and theconfidence to talk to people on a one to one level. That’s how I became involved”(V2, 400).Maggie’s confidence was boosted by the feedback she got from those sheassisted:And the feedback that you get from people well, you know, “I really washelped by talking to you,” “This has been really helpful to me.” And I amthinking what did I do and they felt helped, so okay, what I said must havebeen all right. So the feedback that I get is a good reinforcement and Ihave not had anybody say to me “Well you led me up the garden path” (V2,434).She also said: “I believe so strongly and I am so enthusiastic about it thereforepeople look to me then for help, so it just sort of happens” (V2, 492).From this example it appears that both having an experiential base forone’s knowledge and having it reinforced in experiences are important.Reinforcement by one’s own continuing experiences and by positive feedback fromothers are integral to the transition from newcomer to veteran. The movementfrom a peripheral position to one of centrality appears to depend as well onongoing participation. Framing the transition of newcomer to veteran in this way207demonstrates the importance of ongoing participation in a community of socialpractice. Development and continuation of the community of practice is basic tothe learning of future participants.Evidence that the shift to a leadership position may happen in a shortperiod of time is provided by Glenda who lives in the Fraser Valley. She leads asupport group for cancer patients and does volunteer “outreach” work in theschools and with seniors in her community. She talked about her group:I had no idea that I could fight back. I felt really hopeless so when theyshowed you the visualization, the meditation and how to turn it around atnight instead of the defeating self talk to positive self talk. Well, I was soexcited when I came home from G.F. Strong when I was done in my threemonths there and Rick and I started our own group here using themeditation and visualization tapes and techniques for other cancer patients.Now I’ve got a group, a big group that meet at the Holiday Inn that issponsored by the Cancer Society--the Living with Cancer Group--but I useall the HOPE techniques so it’s ah, it gets the word out faster because it islegitimate because the Cancer Society sponsors it. So it gives it the air ofcredibility (L9, 151).Although Glenda has chosen to “practice” in a group that is already establishedwithin the larger cancer volunteer agency, her transition is still expressed as onefrom newcomer to veteran. It is suggested that her swift movement in thetransition can be explained by zone of peripheral participation. She was ready tolearn within the group of other more experienced cancer patients.Both Jim and Jane also live in communities outside of Vancouver and alsobecame involved in outreach activities. Jim, who started out not wanting todiscuss his cancer with anybody, ended up starting a support group with aminister who was a good friend (L7, 233). They had the group for five years.Then Jim took training with the Cancer Society to lead a group which he ran for208three years. Apparently Jane’s readiness to learn had something to do with theparticular peers that she was exposed to. Jane said:I did join a support group after the first surgery, straight after, because Ithought it was the right thing--I have to do this, I have got to do this now.But is wasn’t for me, they were very good but I was just not ready for it.And yet something in me kept saying if you want to get well you have got togo to these things, this is the right thing to do. So I did keep going (L8, 44).She related her feelings after being to a presentation made by HOPE members.She felt strongly about finding someone “who understands how I feel, like thesepeople know what I am going through” (L8, 68). She knew that she wanted to goto the workshop badly and said “Whatever it costs I wanted to go to one” (L8, 70).Jane told of her further involvement:Well, when I came back I was absolutely full of it. Oh, I have to telleveryone about this. I have got to let everyone know what I have done andhow I feel. So I came back and at work, I work with a lot of women, a lot ofgirls, and one of my bosses, I was telling her what I have just been to and Isaid it was just great. . . I did a 50/50 and collected money (L8, 172).Jane donated this money to HOPE. Then she and a boss who had connectionswith the Kinsmen and Kinettes wrote to service clubs on the Island. They foundout that several clubs would donate money so they decided to try to have HOPEworkshops on Vancouver Island. In the past three years, four introductoryworkshops have been held there with the sponsorship of service clubs.ReadinessImplied in the concepts used in situated learning is the notion that progressin learning depends on both a readiness and an opportunity to be engaged in209learning with teachers or peers. Marilyn said this when asked about coming to agroup like HOPE:You have to want to come yourself. You have to be searching, it is no goodif you’re going because your son or daughter took you and wanted you to go.In one workshop I’m sure it was the wife who insisted that this gentlemengo and he was so very, very negative and closed that he didn’t open hismind to any suggestions. I don’t think that does you any good. Theindividual must be searching himself. It’s not going to work if they’re doingit to please somebody else (Li, 235).When asked if there is anything special that is needed to be a member ofHOPE, Bridget talked about sharing and about participating and beingresponsible.You need to be able to share. And you need to want to participate, to beresponsible. Because just coming to HOPE is not going to do anything foryou unless you are open to the things that HOPE offers and to the idea ofempowering yourself. But I think the biggest thing is being able to share. Idon’t know, maybe you could get something out of HOPE if you just came. Idon’t know. But I think you need to be able to share (L2, 582).David’s reply to the same question was:I guess you just have to have an open mind and even the feeling that thereare things, ah, I guess you have to believe that there is a mind/bodyconnection and that your mind can affect your body. . . . I think you have tobelieve in that. And if you do, well then if you heard anything about HOPEyou may just explore it and may think it is not for me and not bother withany kind of a workshop or whatever or after talking to one of the womenthere, you know, you would touch a nerve and that is what it did for me andI thought well, I really wanted to explore this and go into it (L5, 494).Jim had learned from books and magazines about things like macrobioticdiet, relaxation and positive thinking. Someone gave him the Simonton book, andhe became interested in psychoneuroimmunology and “tried to concentrate onpositive thinking and relaxation, imagery and so on I was getting on sort ofthe surface of the thing, I wasn’t really into it” (L7, 38). He said he heard Claude210Dosdall on a radio open line show and ?he really caught my imagination, myattention. . . . I managed to get hold of Claude and found out that they werehaving a workshop so I went to my first workshop with him and I have never losttouch with the gang ever since” (L7, 44). This demonstrates his readiness toconnect with more experienced others in a process of situated learning.AccessibilityA critical component of the perspective of situated learning is that itrequires belonging to a community of social practice. This implies access tolearning opportunities and opportunities to participate legitimately.Accessibility to learning opportunities is an issue of varying importance todifferent self-help groups. Voluntary organizations require a steady intake of newmembers because some members leave once they have been helped. Moreimportantly, when services are considered valuable, accessibility for the membersis a great concern for the leaders. Opportunities for individuals to learn areessential to the maintenance of a social practice and are basic to socioculturaltransformation (Lave & Wenger, 1991). HOPE is an example of an organizationthat is dedicated to providing learning opportunities for cancer patients. Theleaders are seeking extra funding so programs and accessibility to them can beexpanded.As a store front operation HOPE has an open door approach. Barbara said:“I think we are very open and very accepting where people are and understandthat sometimes they need to talk about things now, and not [have to] make an211appointment for next week. So that, ah, our accessibility I think is important”(V3, 247).There were not many comments about accessibility to the workshops butMarilyn’s comments provide a good example of the evaluation that potentialmembers go through. She said:I needed some help so that’s when I decided. I think the cost was anotherfactor because it wasn’t a recognized group and I asked at the CancerAgency and C. W. said that she thought I should go ahead and actually C.W. had been counselling me, trying to help me through the two monthperiod and she took 15 minutes to half an hour out of her schedule just totalk to me privately. I asked her about it and she thought it was a goodidea and everything was coming together. . . . (Li, 24).As a perspective on adult learning, situated learning with the concept oflegitimate peripheral participation addresses issues that are dominant in learningwith peers. It explains the ongoing learning of members as they associate witheach other. It also provides a frame for discussion of the transition or movementof learners from a peripheral position to one of centrality in the community ofpractice. The issue of accessibility to learning opportunities can also be discussedwithin this framework.Extension of LifeThere is a set of outcomes that have not yet been discussed. They are theoutcomes related to extension of life. They were not included in the discussion onforms of learning related to the ideology of HOPE because causation of cancerdisease is multifactorial. It is also believed that several factors contribute thehealing in cancer disease. The participants interviewed had involved themselves212in many activities as a result of their participation. Some had initiated changesbefore they joined HOPE. Different members participated in different ways andused different traditional treatments for their disease. Currently there is noscientific “proof’ of a direct cause and effect relationship between the extension oftheir life and their participation in HOPE. However, they are included herebecause the members have strong feelings about their participation in HOPE.Furthermore, the outcomes can be viewed as important markers for someoneconsidering participation in HOPE or pursuing some of the learnings on their own.Members recognize that they cannot prove the results they have achieved areattributable only to their participation in HOPE. Many feel like Marilyn whoreflected: “Well, my health turned around and I didn’t know exactly what changedit but I wasn’t about to let go of anything that might be keeping me well so HOPEwas part of it” (Li, 252).The participants interviewed were selectively chosen for their reputation assuccessful learners and are viewed as cancer survivors. This is not to say that allthe members interviewed were formally told by medical professionals that theywere “terminal,” i.e., there were no more traditional treatments available forthem. In fact,only three of those interviewed were told that. For all participants,the kinds of cancer and the señousness of the disease varied. Nonetheless, therewere many references to having had “clear” reports upon checkup. When askedabout the benefits of participating in HOPE, Bridget stated “It has made adifference in as much as I am here five years post-diagnosis and in remission, I213mean recurrence free. And it is a good feeling for me to think that I participatedin that” (L2, 524).David had surgery, radiation and chemotherapy for a grade II astrocytoma,the clinical name for a type of primary brain tumour. The surgeon did not removeall of the tumour because it “was situated in a portion of my brain that was nextto an area that controlled by left arm and if they had got any closer they wouldhave destroyed the area and I wouldn’t be able to use my left arm” (L5, 87). Nowhe reports that:My last CT scan was in the end of June. . . They said they really couldn’ttell if there was anything there except for scarring from the originalsurgery. So it was like totally gone which was great news. I couldn’t quitebelieve it at first. You prepare yourself for the worst (L5, 77).Phyffis told me her blood test was clear for the first time in five years and thensaid:So much of my help was on the psychological level. And I think, I think youhave to look at things that way. You have to be positive. As I said earlier,it doesn’t save everybody’s life but it certainly saved mine. . . . It’s awonderful feeling. I know, it maybe isn’t forever but it’s for today (Lii,413).Situated Learning as a perspective on adult learning captures the essence oflearning with peers: the important processes that can happen on the basis of theshared experience and the movement of members from a position of peripheralityto a position of centrality. The concepts of legitimate peripheral participation andzone of proximal development assist in understanding these phenomena. Theyalso provide a context for discussion of readiness to learn within a group of peersand the accessibility of such learning opportunities.214SummaryTaken all together, the learning experiences expressed by the participantsof HOPE were exciting and fruitful. From my own experience I think they werealso challenging and rewarding.Organization of the data was challenging and many circular routes weretaken to map out a picture of the experiences of learning of members of HOPE.Three different but overlapping perspectives on adult learning were used asguides. Concepts and propositions that are prominent in writings ontransformative learning, experiential learning and situated learning highlightedcertain data and provided meaningful interpretation. The analysis of the datainvolved an interplay between the theoretical writings and the data. Certainthemes emerged from the data. They have been identified as: the ideology ofHOPE as the framework for learning, experience is the condition for knowledge,the affective dimension of learning as integral and being with peers as animportant medium in the learning process. Learning with peers is highly valuedand acts as a catalyst for the learning related to the other three themes.Now looking back on the data is like viewing a kaleidoscope, the picture isboth colourful and changeable. A summary does not do justice to the material inthis chapter. It is brought to a close with these comments by David:It is a kind of different adult education because, like I said, you are in a lifethreatening situation so you’re a whole lot more apt to be open to learnsomething especially when it hits home directly with what you are feelingand what you have been through (L5, 627).215CHAPTER SEVENSUMMARY, IMPLICATIONS, LIMITATIONS AND CONTRIBUTIONSMy interest in HOPE Health Cancer Centre began in 1984 when I attendeda presentation on HOPE made by Claude Dosdall and Moyra White, co-founders ofthe organization, while I was a practicing community health nurse. At that firstencounter I was impressed with their work and it renewed my interest in the useof relaxation and visualization techniques in promoting health for myself andothers. In 1988, I attended a second workshop--this time as a cancer patient. Myview was very different during the second workshop because I arrived burdenedwith the fears and the sense of helplessness that seem to be unavoidablyconnected with the experience of cancer. Since that time my continued learningabout cancer, about myself and about care of myself through my involvement withHOPE has been a significant and rewarding part of my life.At the time of my cancer diagnosis I was taking courses in adult educationat the University of British Columbia. The decision to focus on HOPE CancerHealth Centre for my thesis requirement was not made lightly. Although I wasinitially enthusiastic about listening to and recording other’s experiences, Iseriously questioned my ability to take care of myself in the process of beingimmersed for a lengthy period of time in the world of cancer and care of cancerpatients. The emotional tension that I expected was not unmanageable but thedemands of the work on my time certainly created tension in my physical being.Completion of this research attests to my deep concern for how cancer patients216are “treated.” I learned enormously about cancer and cancer care and about self-help. I am very indebted to my peers for sharing their learning experiences withme. My own learning experience was a process of discovery and reward.In keeping with the qualitative approach, this study has provided acomprehensive description of the HOPE Cancer Health Centre and of the multiplerealities of selected members of HOPE as they experienced learning asparticipants of HOPE. Research questions articulated early in the researchprocess were used to focus the collection and analysis of data. These questionswere formulated from literature on the subjects of self-help groups and adultlearning in conjunction with my own sense of what might be valuable forinterested readers. The questions are repeated here and will be considered inturn as a way of summarizing the findings. The rest of this chapter implicationsof the study, limitations of the study and contributions of the study.SummaryThe following questions have been the focus of the research and have beenanswered through the collection and analysis of data related to them.A. HOPE as a self-help organization.1. What are the characteristics of HOPE as a self-help group?2. How does it compare to other self-help groups?3. Have some characteristics changed over time and if so, what have thechanges been and what has influenced the changes?4. How is the organization maintained?217B. Members’ learning experiences as participants of HOPE.1. What are the characteristics of HOPE as a helping/learning context?2. What is its purpose and what is planned to achieve the purpose?3. What is actually happening in this context and where does it happen?4. What is the ideology of this group and how is it put forth?5. What experiences do members say are helpful?6. What do members say about the way they learn in this setting?7. How are the learning opportunities accessed?8. What do members say they learn in this setting?9. What, if any, are the significant changes that members believe are aresult of participation in this group?10. What changes in the nature of members’ participation or movement inthe organization, if any, do members relate?HOPE Cancer Health CentreHOPE Cancer Health Centre is an autonomous self-help organization and isbelieved to be the first organization for cancer patients in North America foundedby cancer patients. Located in Vancouver, British Columbia, it continues tooperate under the leadership of individuals who have had the experience of cancer.It is registered as a non-profit charitable organization.218CharacteristicsSimilar to other self-help groups, HOPE’s purpose is to assisting its memberswith a specific problem or concern in a way that is different from the focus in thedominant culture or professional care giving system. The atmosphere of mutualassistance capitalizes on the benefits of the experiences and knowledge of “similarothers” (Riessman, 1987). At HOPE, the focal problem is the experience of cancerin a context of the social isolation, fear and despair that are related to the life-threatening nature of the disease. The emphasis in our health care system is oncurative medical treatments; their success with cancer diseases is still limited.The limited provision of psychosocial care in the formal health care systems addsweight to the problem.The belief system or ideology developed at HOPE to assist cancer patients inbecoming actively involved in their cancer care and recovery can be captioned as“self as participant in healing.” It is believed that people can actively fight thedisease of cancer, that there are psychological and emotional components to cancercausation and that attention to these components is essential in care. Further,there are some important ways that persons can become involved in their care.These are based are two powerful underlying beliefs. One is that the mind, bodyand spirit are intrinsically connected and that each domain is influenced by theothers. A second related belief is that a position of power and control is morehealth inducing than one of helplessness and powerlessness. The second belief iscentral to the self-help ethos (Suler, 1984). Members are encouraged to make a219shift toward taking responsibility for their own well being, rather than assumingthe position of “needing to be taken care of.”The composition of HOPE is similar to that of other self-help groups and is amix of newcomers and oldtimers or veterans, as they are referred to in theliterature. The efficacy of these groups is partially explained by the fact that bothreferent and expert power are usually assigned to the veterans because they are“in the same boat” and have valid experience in dealing with the problem ofconcern. This is the case at HOPE.DifferencesHOPE Cancer Health Centre is not significantly different from other self-helpgroups. Because the work of self-help groups is often at the edge of acceptabilityin mainstream culture, sanction is not readily conferred. In the beginning, HOPEdid not get support from the formal cancer care agencies. The members of HOPEbelieve that the services provided should be available to all cancer patients andtherefore has made special efforts to achieve continually improved relationshipswith professional cancer care providers and to gain wider acceptance of the beliefsthat they purport.The fee charged for the introductory workshop differentiates HOPE frommany self-help groups. In order to maintain a place where cancer patients cancome HOPE is located in a store front located on West Broadway. This meanstheir expenses are greater than self-help groups that meet in church basements orspace in service clubs (e.g., Alcoholics Anonymous and Weight Watchers).220Unfortunately the fee is believed to be a deterrent to some potential members. Inorder to contain costs, advertising is by word of mouth.Another difference that is quite significant is the fact that many members areseriously ill when they join HOPE and many do die from cancer disease. Thiseffects a great emotional toll on the leaders and also limits the availability ofvolunteers to help run the organization. Members that have developedexperiential knowledge in self-help organizations are called veterans (Weiss,1976). They play an important role because they exemplify the values of theideology.Changes Over TimeThe most notable change in HOPE has been a formalization of the programsbased on a shift in focus to education and away from provision of support. Theliterature refers to growth of self-help organizations as mainly taking twodirections: one toward more social action and the other toward professionalism.The findings indicated that the leaders and members of HOPE are most interestedin the services they can provide and in becoming more professional. This shift hasbeen influenced by the growing acceptance in the community of their services forcancer patients and of the beliefs that underpins the organization.Maintenance of HOPEThe maintenance of HOPE has been precarious at times as it depended in thebeginning on the strength of the leaders and their financial resources, since they221frequently used their own money. The long time Director of HOPE, ClaudeDosdall, died recently and Moyra White, a co-founder and co-leader with Claude,has assumed the central leadership.Funding is achieved through a variety of means. As well as the workshopfees, HOPE receives charitable donations from members, members’ families,service clubs and philanthropic organizations.Some of the characteristics of HOPE have been summarized. The diversity ofself-help organizations makes them difficult to classify. Levy (1976) proposed atypology of self-help groups based on four purposes: behavioral control, stresscoping and support, survival orientation and personal growth or self-actualization.It appears that HOPE Cancer Health Centre is an organization focusing on all butbehavioral control.The features of HOPE as a self-help organization also define a context for thelearning experiences of the members. Missing from this summary of thecharacteristics is the “milieu” of HOPE, which is described as warm, friendly,accepting, safe and inspiring. This is an important element in the learning ofmembers of HOPE, the focus of the next section.Members Experiences Learning as Participants of HOPE:Learning with PeersThe characteristics which define HOPE as a self-help group essentiallydescribe the context for learning for members of HOPE. The purpose could berephrased: to “provide opportunities” for cancer patients “to learn” to become222actively involved in cancer care and recovery. Elements of learning can be viewedas context, processes and outcomes. It has been established that these elementsare dynamically interrelated but the distinctions can be made for the sake ofclarity.ContextDiscussion of the context of HOPE is focused on the activities that areplanned to achieve the group’s purpose. Similar to other self-help groups, theideology of HOPE becomes the frame of reference for the learning of the members.ActivitiesThe main activity planned for achieving the purpose of HOPE is a workshop,usually held on a weekend. The participants are cancer patients and theirsupport persons. The leaders act as facilitators to initiate sharing and foster theprocess of mutual assistance. There is less emphasis on skills for implementingthe “self as participant in healing” ideology than there is on helping participantswork through any attitudinal and feeling shifts needed to redefine and establishnew meaning to their experience. The source of help in self-help groups is themembers themselves. Interaction is encouraged and time in the workshops ismostly spent in focused group discussions. Members are encouraged to participateto their level of comfort.The other activities of HOPE are both supportive and educational. Initialcontacts by cancer patients or their families are by phone or “drop-in” at the office.223Information and support are provided in these contacts. One to one counselling,special education evenings or programs, library services and a newsletter are theother ways that members’ learning is encouraged at HOPE.IdeologyIdeology, in this context, has been defined as “not only the group’s explicitbeliefs, but also its rituals, rules, of behavior, slogans, and even favorite turns ofphrase” (Antze, 1976, p. 324). It is identified as central to the capability of a self-help group to effect change (Antze, 1976). It is certainly significant to thelearning of the members of HOPE: several members made significant changes as aresult of adopting new perspectives or learning within the ideology of HOPE. Theset of beliefs which is based on the group wisdom has also been characterized asan “experiential knowledge base” (Borkman, 1976). Evidence of the experientialnature of the knowledge was clearly demonstrated and it is an important elementin the learning of the members of HOPE as it appears to greatly assist membersto open to the beliefs initially.The other important feature of the context is the focus on sharing bymembers. That fellow learners are “peers” sharing the common problem of livingwith cancer appears to be especially powerful. It adds a significant dimension tothe learning of HOPE’s members.224ProcessesSeveral of the elements important to the learners in terms of their learningexperiences have been alluded to. One is the power of their ideology. The factthat veteran members of HOPE are present to discuss personally how they havevalidated certain beliefs through their own experiences of cancer care and recoverystrengthens the beliefs.“Learning with peers” can also be viewed as the context for learning. It setsthe stage for learning by establishing a common ground and a camaraderie thatfosters trust. These elements assist members to open to the new learningexperiences. The affective dimension of learning is profoundly important as alllearning relates to the emotionally laden experience of cancer. Members are ableto continually support one another, not only with essential emotional support, butalso with the practical ideas and skills that they have personally used.Information exchange is encouraged and members are not judged for their ideas;the safety and openness fostered in the groups is regarded as very helpful.It has been previously mentioned that a fee is charged for the workshop.This limits access because it discourages some patients from becoming members.Classes in relaxation and meditation have been introduced at the B.C. CancerAgency. Still, it is believed that HOPE offers unique learning opportunities forcancer patients.225OutcomesA wide range of learning outcomes were identified by members of HOPE.The participants in the research were a small number and were purposefullychosen for their reputation as “interested” members. The learning outcomes wereexpected to be positive; this was indeed the case.The outcomes can be classified in several ways. First of all, there wereoutcomes related to qualitative differences in the way individuals felt orexperienced their cancer as a result of their learning experiences. These outcomesvaried from having a sense of control, feeling excited and no longer feelingashamed, to having new attitudes such as it is good to cry “even if a man” (L7).Skills and new practices such as meditation or visualization, diet and exerciseroutines, and stress management techniques were also named as importantlearnings. These outcomes fit well into a frame of forms of learning whichincludes forms of transformative learning (Mezirow, 1991).The members were asked about any significant changes that they had as aresult of their participation in HOPE. The question was asked with theknowledge that members exposed to an ideology such as HOPE’s had the potentialfor redefining or reframing their experiences by transforming meaningperspectives or meaning schemes to achieve a more inclusive and discriminatingunderstanding of one’s experience (IViezirow, 1981). Evidence of this kind oflearning was highlighted by phrases such as the “new me,” or “my mind wasboggled,” and “it changed my world.” Transformative learning precedes newlearning of the other forms, when individuals come with inadequate or insufficient226meaning schemes or meaning perspectives initially. Some members, myselfincluded, already had the perspective but wished to expand their learning withinthat frame.Only one of the members interviewed was having treatments at the time ofthe interview, but all attributed their good health status at least partly to thelearnings they had experienced at HOPE. The causative factors of cancer are notcompletely known. Also, effects of certain treatments vary from one person toanother; therefore cause and effect relationships are difficult to establish. Oneperson suggested that since she was well, she would not change anything eventhough she could not be sure about what really helped.It is clear that experience plays a significant role in the learning ofparticipants of HOPE. The learning outcomes were identified by the changes inthe lived experiences of the members. The learners use their own experience andthe experiences of trusted others to validate the beliefs and build their ownknowledge base. Another perspective is provided by viewing the self-help group assituated learning: a social practice that is evolving and changing with themembers’ own learning. This view suggests that learning happens through thelegitimate peripheral participation of members.A final consideration in this summary of the findings is the movement withinthe organization of members from a peripheral position to one of centrality.Maintenance of the organization depends on involved and knowledgable members.This transition of members was explained by all three different models of adult227learning, thus demonstrating the power of the adult learning literature toilluminate the working of self-help groups.It is apparent that the shift from newcomer to veteran depends on members’adoption of the ideology of HOPE. This is a form of transformative learning.Literature on experiential learning also contributes understanding of thephenomenon because members that become veterans have built an experientialknowledge base. Concepts of legitimate peripheral participation and zone ofproximal development in the situated learning literature are useful in viewing thephenomenon as one of participation in a community of social practice.The three conceptual frameworks selected from the literature on adultlearning were profoundly useful in interpreting the learning experiences ofmembers of HOPE. Each was utilized in a different and beneficial way. Thereare certain implications as a result of the findings and their interpretations.Implications of the StudyThe focus of this study was broad. It included a comprehensive description ofHOPE as a self-help organization and learning community and study of thelearning experiences of members of HOPE. Background for the research wasfound in the areas of health promotion, cancer care, self-help groups and adulteducation. The implications of the findings are also broad and will be consideredwithin the same large areas.229underscores the reluctance to look beyond traditional medicine for beneficialtherapies.More studies are needed on exceptional cancer patients to determine moreabout the relationships of all factors involved in cancer recovery. The effects ofhope, inspiration and a sense of personal power cannot be put aside. Until morestudies are done a philosophy of care that emphasizes care over cure andencourages more active involvement in healing by the patients is needed.Self-Help GroupsEarly studies of self-help groups characterized them as quasi-professional,substitutes for professional care or deviant social organizations (Katz & Bender,1976). More recent studies indicate a shift in this evaluation. Powell (1990),Borkman (1989) and Checkoway, Chesler and BIum (1990) have all written fromthe perspective of self-help groups as legitimate care providers in a larger systemof care which includes professional care and informal care (such as that providedby family and friends). The distinctions are based on differences in characteristicssuch as knowledge base and source of help.One of these characteristics is the experiential basis of the knowledge base inself-help groups (Borkman, 1989; Powell, 1990). The extent to which thesefindings can be generalized needs to be determined. Experiential knowledge of theleaders has been determined to be of prime importance. It has also been reportedby the members of HOPE that the context of learning and the opportunities forlearning of different forms is valued. Self-help groups could be assisted in230designing their activities and programs to capitalize on the experience ofmembers. The leaders of self-help groups could be assisted to develop effectivelearning facilitation skills.Adult EducationImplications in the area of adult education arise from the single fact that self-help groups are learning communities. They should no longer be ignored. Morestudies informed by the interests of adult educators need to be carried out.Findings focused from this perspective would contribute to the ongoing study ofadult learning and to the body of knowledge about self-help groups.There needs to be more study of the processes of learning in this building ofexperiential knowledge. This research has revealed the profound importance ofexperience in the learning of the members of HOPE. It is both the medium oflearning and the means for members to validate their beliefs. Further, experienceis full bodied and inclusive of all domains: cognitive, affective, social and spiritual.More attention needs to be paid to the interplay of these dimensions in learning ofall forms.Emancipation is a dominant theme in adult education. Several recent workshave focused on transformative learning and emancipatory education (e.g.,Mezirow & Associates, 1990). This study has surfaced findings that appear tosupport, at least tentatively, a relationship between personal power and wellbeing. If having a “sense of control” and knowing that “I have resources” areviewed as important outcomes, it appears that more study of the effects of231empowering experiences are essential. More specifically, adult educators can be ofdirect assistance in interpreting ways of fostering transformative learning andexperiential learning.The writings on situated learning encourage further study of learning withpeers and also provide links to the literature on emancipatory education. Theconcept of legitimate peripheral participation creates a demand for attention toissues of social organization and control of resources. If patient participation andinvolvement in the process of healing is as critical as it appears, both patients andprofessionals will need re-education in order to expand their roles. Further studyof this dynamic is required, but it appears that there is a signal for transfer ofknowledge of emancipatory education to professionals in the health care system.These implications may be difficult to take seriously on the basis of onestudy. The findings relate to many areas and more intense study is needed.However, some pathways have been indicated and it is hoped that the findings ofthis study will encourage further exploration.Limitations of the StudyThe naturalistic-phenomenological tradition “consistently points to theessential inter-connectedness of objects and events which occur in the everydayworld of human action” (Collins, 1984). The qualitative approach helps to discoverand describe phenomena from the perspective of participants and was an effectivemethod for this study. A broad comprehensive description of HOPE Cancer232Health Centre and a rich presentation of the learning experiences of members ofHOPE was the result. However, there are some limitations to the study.The study is very broad in nature, and therefore could be criticized for lack ofdepth and specificity. The areas where more in-depth research could be done werehighlighted by the introduction of conceptual frameworks from the literature onadult learning. The use of some concepts in the frameworks to provide focus andinterpretation for the data made more obvious the many areas where more specificresearch could be formulated.The data was collected in narrative style which led to the discovery of themultiple realities of the participants. This kind of data is tied to the context inwhich it is derived and is limited in that way. Generalizations to other groups aretentative until further studies are done.It must be noted that the intent of the study was to gain understanding ofthe phenomena of learning within the context of a self-help group and not to do anevaluation of HOPE as a self-help organization. The number of participants inthis study was small. There were a total of 26 new members in the twoworkshops I attended. No new members were interviewed because it was believedtheir learning was in an early formative stage. Fourteen members that wereviewed as veterans were interviewed. These members were purposefully selectedfor their reputation as learners. As well, three of them are the current staffmembers at HOPE. The selection process meant that the data was weightedoverwhelmingly toward the positive. The lack of negative information aboutmembers learning also could be a reflection on the particular individuals that233chose to join HOPE in the first place. Certainly, generalizations about allmembers of HOPE cannot be made from the data. The commentary is limited tothe members that were interviewed and observed. The fact that only “successful”learners were interviewed may be viewed as a limitation.All of the accounts provided by individuals were retrospective. As it isbelieved that people tend to forget unpleasant experiences, the reports may becolored toward the positive. The interviewees did not report a tension that I haveoccasionally felt between the notion of self-responsibility and self-blame.Encouragement to stay in the present moment rather than dwell on the past ishelpful but is sometimes difficult when fear and worry seem to be thepredominate feelings. There is a need for longitudinal study of members of HOPEin order to get a clearer and more accurate account of the learning. It would alsobe worthwhile to determine what factors influence individuals to join HOPE andalso to study the many cancer patients that claim they have achieved goodoutcomes through learning on their own.As I was instrumental in data collection and am an active member of HOPE,it could be argued that my bias has influenced the study. The amount of evidencepointing to the positive impact of the ideology of HOPE is so great that it reducesthe significance of my bias.The area of social policy related to self-help groups was not included in thisstudy. There are implications in this broad area and lack of review of the specificissues could be viewed as a serious omission. Even with these limitations thestudy contributes in several ways.234Contributions of the StudyA meaningful contribution of this study is the detailed description of HOPECancer Health Centre. As an independent self-help organization, it has reachedover 2,000 cancer patients in some way, yet is not well known to the public or toprofessional health care providers.Presentation of the learning experiences of members of HOPE, which mayseem extraordinary, is not intended to provide a glowing recommendation of thework of HOPE. Rather it was intended to open discussion of possibilities of betterapproaches to care and treatment of cancer patients. The psychosocial needs ofcancer patients have been highlighted in ways that support more seriousevaluation of the present limitations in the care given to cancer patients in thecare facilities. The study has demonstrated that mutual assistance provides aviable and meaningful way to enhance the care system.It is believed that development of a framework for enclosing data related toself-help groups is a contribution. It can facilitate the description of self-helpgroups and other community learning organizations and helps to highlight theiruniqueness. It can also provide a way of clarifying the unique contribution of theself-help care system within the larger care giving system.The study was also intended to highlight those elements of adult learningthat appear to be critical in this context. Openings for exploration of theseelements in other contexts have been shown. Experiential learning andtransformative learning have well developed concepts that can be studied furtherin this context. Study of learning with peers has not been a focus in literature on235adult learning and the addition of situated learning to the collection of writings iswelcome. It is believed that the benefits of learning with peers have beenhighlighted to the extent that interest in models of adults learning with peers willbe renewed. It is believed that what has been presented may spawn or renew aninterest in several areas of adult learning.Listening to the stories of members of HOPE was an inspiring activity andthe presentation of the stories is a significant and worthwhile document for meand other cancer patients. “In listening to the stories told by countless humanlives, we more richly unfold our own, which (as is true of each) will be a story toldonly once and yet will be the story of everyone” (Cell, 1984, p. 19). It is alsobelieved that a contribution has been made to cancer patients. More importantly,cancer patients made this contribution to themselves.236REFERENCESAchterberg, J. (1985). Imagery in healing: Shamanism and modern medicine.Boston: New Science Library.Antze, P. (1976). The role of ideologies in peer psychology organizations: Sometheoretical considerations and three case studies. Journal of AppliedBehavioral Science, 12, 323-346.Ardell, D.B. (1977). High level weilness. Emmaus, PA: Rodale Press.Back, K.W. & Taylor, R.C. (1976). Self-help groups: Tool or symbol? Journal ofApplied Behavioral Science, i, 295-309.Bennett, R. (1987). Self-Imagery: Creating your own good health [Review: SeffImagery: Creating your own good health]. Humane Medicine, (2), 144-145.Blair, V.E. (1987). Learning: Processes in self-help groups. Unpublished majorpaper. University of British Columbia, Vancouver.Bereson, S. (1988). The cancer patient. In R.P. Zahourek (Ed.), Relaxation andimagery: Tools for therapeutic communication and intervention (pp. 168-191).Toronto, ON: W.B. Saunders.Berger, P. L. & Luckmann, T. (1967). Social construction of reality: A treatise onthe sociology of knowledge. Garden City, NY: Doubleday Archer.Berger, J.M. (1984). Crisis intervention: A drop-in support group for cancerpatients and their families. Social Work in Health Care, 10(2), 8 1-92.Blake, S. (1985). Group therapy with breast cancer patients. In M. Watson & T.Morris (Eds.), Advances in the Biosciences: Vol. 49. Psychological aspects ofcancer (pp. 93-98). Toronto: Permagon Press.Bloom, J.R. (1982a). Social support systems and cancer: A conceptual view. In J.Cohen, J.W. Cullen, L.R. Martin (Eds.), Psychosocial aspects of cancer (pp.129-149). New York: Raven Press.Bloom, J.R. (1982b). Social support: Accommodation to stress and adjustment tobreast cancer. Social Science and Medicine, 16, 1329-1338.Borg, W.R. & Gall, M.D. (1989). Educational research: An introduction (5th ed.).New York, NY: Longman.237Borkman, T.J. (1976). Experiential knowledge: A new concept for the analysis ofself-help groups. Social Service Review, Q, 445-456.Borkman, T.J. (1984). Mutual self-help groups: Strengthening the selectivelyunsupportive personal and community networks of their members. In A.Gartner & F. Riessman (Eds.), The self-help revolution (pp. 205-2 15). NewYork: Human Sciences Press.Borkman, T.J. (1990). Experiential, professional, and lay frames of reference. InT.J. Powell (Ed.), Working with self-help (pp. 3-30). Silver Spring, MD:National Association of Social Workers Press.Borkman, T.J. (1991). Introduction to the special issue. American Journal ofCommunity Psychology, i, 643-650.Borman, L.D. (1979). Characteristics of development and growth. In Lieberman,M.A.., Borman, L.D. & Associates (Eds.), Self-help groups for coping withcrisis (pp. 13-42). San Francisco: Jossey Bass.Borysenko, J.Z. (1987). Minding the Body, Mending the Mind. Reading, MA:Addison-Wesley Publishing Company, Inc.Borysenko, J.Z. (1982). Behavioral-physiological factors in the development andmanagement of cancer. General Hospital Psychiatry, 4, 69-74.Boshier, R. (In press). Initiating research. In R. Garrison (Ed.), Researchperspectives in adult education. Florida: Krieger.Boucouvalas, M. (1983). Social transformation, lifelong learning, and the fourthforce:Transpersonal psychology. Lifelong Learning: The Adult Years, (7),6-9.Boud, D.J., Keough, R., & Walker, D. (1985). Promoting reflection in learning: Amodel. In D.J. Boud, R. Keough & D. Walker (Eds.), Reflection: Turningexperience into learning (pp. 18-40). London: Kogan Page.Boyd, E.M. & Fales, A.W. (1983). Reflective learning: Key to learning fromexperience. Journal of Humanistic Psychology, 23(2), 99-117.Brewin, T.B. (1986). Quality of survival - can we measure it? Can we influenceit? In B.A. Stoll & A.D. Weisman (Eds.), Coping with cancer stress. Boston:Martinus Nijoff Publishers.Bruffee, K.A. (1993). Collaborative learning. Baltimore, MA: John HopkinsUniversity Press.238Burnard, P. (1988). Experiential learning: Some theoretical considerations.International Journal of Lifelong Learning, 7(2), 127-133.Caffarella, R.S. & O’Donnell, J.M. (1987). The culture of adult educationinstitutions. Lifelong Learning: An Omnibus of Practice and Research, 11(1),4-6, 22.Caplan, G. & Killilea, M. (Eds.). (1976). Support systems and mutual help:Multidisciplinary explorations. New York: Brune & Stratton.Capra, F. (1982). The turning point: Science, society and the rising culture.Toronto, ON: Bantam Books.Carrol, E. (1987). Learning for social action: Perspective transformation andconscientization contrasted and analysed. Unpublished major paper.University of British Columbia, Vancouver.Cartwright, D. & Zander, A. (Eds.). (1968). Group dynamics: Theory and research(3rd ed.). New York: Harper & Row.Checkoway, B., Chesler, M.A., & Blum, S. (1990). Self-care, self-help, andcommunity care for health. In T. J. Powell (Ed.), Working with self-help (pp.277-300). Silver Spring, MD: National Association of Social Workers.Cohen, F. (1984). Coping. In J.D. Matarazzo, S.M. Weiss, J.A. Herd et al. (Eds.).Behavioral health: A handbook of health enhancement and disease prevention(pp. 26 1-274). New York: Wiley.Cohen, J. (1982). Response of the health care system to the psychosocial aspectsof cancer. In J. Cohen, J.W. Cullen, L.R. Martin (Eds.), Psychosocial aspectsof cancer (pp. 111-116). New York: Raven Press.Cohen, M. (1982). In J. Cohen, J.W. Cullen, L.R. Martin (Eds.), Psychosocialaspects of cancer (pp. 111-116). New York: Raven Press.Collins, M. (1984). Phenomenological perspectives: Some implications for adulteducation. In S. Merriam (Ed.), Selected writings on philosophy and adulteducation (pp. 179-89). Malabar, FL: R.E. KriegerCousins, N. (1980). Amatomy of an illness as perceived by the patient. NewYork: W.W. Norton.Cross, K.P. (1981). Adults as learners. San Francisco: Jossey-Bass.239Cunningham, A.J. (1985). The influence of mind on cancer. CanadianPsychology, 26(1), 13-29.Cunningham, A.J., Edmonds, C.V.I., Hampson, A.W., Hanson, H., Hovanec, M.,Jenkins, G., & Tocco, E.K. (1991). A group psychoeducational program tohelp cancer patients cope with and combat their disease. Advances: TheJournal of Mind-Body Health, 7(3), 41-55.Dosdall, C. (1984, Winter). The most feared word today. Heartwood, pp. 12, 13,15.Dosdall, C. & Broatch, J. (1986). My God I thought youd died. Toronto, ON:Seal Books.Durman, E.C. (1976). The role of self-help in service provision. Journal ofApplied Behavioral Science, 12, 433-448.Epp, J. (1986) Achieving health for all: A framework for health promotion.Canadian Journal of Public Health, 77(6), 393-408.Farquharson, A. (1990). Self-helpers and professionals. In J-M. Romeder andcontributors. The self-heln way: Mutual aid and health (pp. 113-124).Ottawa, ON: Canadian Council on Social Development.Ferguson, M. (1980). The aguarian conspiracy: Personal and social transformationin the 1980s. Los Angeles, CA: J.P. Tarcher.Frank, J. (1961). Persuasion and healing: A comparative study of tsychotheraty.New York: Schocken Books.French, J.R.P. & Raven, B. (1968). The bases of social power. In D. Cartwright& A. Zander (Eds.), Group dynamics: Theory and research (3rd ed.) (pp. 259-269). New York: Harper & Row.Freire, P. (1970). Pedagogy of the opyressed. New York: Seabury Press.Gartner, A. & Riessman, F. (1979). Self-help in the human services. SanFrancisco, CA: Jossey-Bass.Goldberg, R.J. & Cullen, L.O. (1985). Factors important to psychosocialadjustment to cancer: A review of the evidence. Social Science and Medicine.Q(8), 803-7.Gordon, W.A., Freidenbergs, I., Biller, L., Hibbard, M., Wolf, C., Levine, L.,Lipkins, R., Ezrachi, 0., & Lucido, D. (1980). Efficacy of psychosocial240intervention with cancer patients. Journal of Consulting and ClinicalPsychology, 48, 743-759.Green, L.W. (1984). The future of cancer patient education. Health educationquarterly, IQ, Special Supplement, 102-110.Greene, W.A. (1954). Psychological factors and reticulo-endothelial disease: I.Preliminary observations on a group of males with lymphomas and leukemias.Psychosomatic Medicine, 16, 220-230.Hammerman, M.L. (1988). Adult learning in self-help mutual/aid support groups.Lifelong Learning: An Omnibus of Practice and Research, 12(1), 25-27, 30.Heron, J. (1981). Philosophical basis for a new paradigm. In P. Reason & J.Rowan (Eds.), Human Inquiry (pp. 19-35).Holland, J.C. (1984). Progress in the psychosocial management of cancer.Proceedings of the American Cancer Society Fourth National Conference (pp.7-11).Hough, P.T. (1990). An investigation of critical self-reflective learning amongmembers of Alcoholics Anonymous. Unpublished doctoral dissertation,Teachers College, Columbia University.House, J.S. (1981). Work stress, and social support. Reading, MA: Addison-Wesley.Irwin, T. (1988, September). Getting in touch with hope. Woman to Woman, pp.32-34.Jarvis, P. (1987a). Adult learning in the social context. London: Croom Helm.Jarvis, P. (1987b.) Meaningful and meaningless experience: Towards an analysisof learning from life. Adult Education Quarterly, 7(3), 164-172.Jarvis, P. (1988). Knowledge and learning in adult education. Adult EducationResearch Conference Proceedings, (pp. 163-8). Calgary, AB: University ofCalgary.Katz, A.H. (1981). Self-help and mutual aid: An emerging social movement?Annual Review of Sociology, 7, 129-155.Katz, A.H. (1970). Self-help organizations and volunteer participation in socialwelfare. Social Work, 15(1), 51-60.241Katz, A.H. & Bender, E.I. (Eds.). (1976). The strength in us: Self-help groups inthe modern world. New York: Franklin-Watts.Katz, A.H. & Bender, E.I. (1990). Helping one another: Self-help groups in achanging world. Oakland, CA: Third Party Publishing.Keeton M.T. & Tate, P.J. (1978). Editor’s notes: The boom in experientiallearning. In M.T. Keeton and P.J. Tate (Eds.), Learning by Experience: What.Why and How (pp. 1-8). San Francisco, CA: Jossey-BassKelly, G.A. (1955). The psychology of personal constructs. Vols. I & II. NewYork: W.W. Norton.Kilian, A. (1988). Conscientisation: An empowering, nonformal educationapproach for community health workers. Community Development Journal,23(2), 117-123.Killilea, M. (1976). Mutual help organizations: Interpretations in the literature.In G. Caplan and M. Killilea (Eds.), Support systems and mutual help:Multidisciplinary explorations (pp. 37-93). New York: Brune & Stratton.Kitchener, K.S. & King, P. (1990). The reflective judgment model: Transformingassumptions about knowing. In J. Mezirow & Associates, Fostering criticalreflection in adulthood: A Guide to transformative and emancipatory learning(pp. 159-176). San Francisco, CA: Jossey-Bass.Kolb, D.A. (1984). Experiential learning: Experience as the source of learningand development. Englewood Cliffs, NJ: Prentice Hall.Kolb, D.A. & Fry, R. (1975). Towards an applied theory of experiential learning.In C.L. Cooper (Ed.), Theories of group processes (pp. 33-58). London: JohnWiley.Koib, D.A. & Lewis, L.H. (1986). Facilitating experiential learning: Observationsand reflections. In L.H. Lewis (Ed.), New directions for continuing education:No. 30. Experiential and simulation techniques for teaching adults (pp. 99-107). San Francisco: Jossey-Bass.Knowles, M.S. (1980). The modern practice of adult education. Chicago: Follett.Knox, A.B. (1980). Proficiency theory of adult learning. ContemporaryEducational Psychology, , 378-404.Kuhn, T. (1962). The structure of scientific revolutions. Chicago: University ofChicago Press.242Lalonde, M. (1974). A new perspective on the health of Canadians. Ottawa, ON:Government of Canada.Lamb, R.M. (1988). A will to live. The Canadian Nurse, 84(4), 87-88.Lave, J. & Wenger, E. (1991). Situated learning: Legitimate periph1participation. Cambridge: Cambridge University Press.Lazarus, R.S. (1982). Stress and coping as factors in health and illness. In J.Cohen, J.W. Cullen, L.R. Martin (Eds.), Psychosocial aspects of cancer (pp.163-190). New York: Raven Press.LeShan, L. (1977). You can fight for your life: Emotional factors in the treatmentof cancer. New York: M. Evans and Company.LeShan, L. & Worthington, R.E. (1956). Some recurrent life-history patternsobserved in patients with malignant disease. Journal of Nervous and MentalDisorders, 124, 460-465.Levine, M. (1988). An analysis of mutual assistance. American Journal ofCommunity Psychology, 16(2), 167-188.Levy, L.H. (1976). Self-help groups: Types and processes. Journal of AppliedBehavioral Science, 12, 311-322.Levy, S.M. (1990). Psychosocial risk factors and cancer progression: Mediatingpathways linking behavior and disease. In K.D. Craig & S.M. Weiss (Eds.),Health enhancement, disease prevention and early intervention: Behavioralperspectives (pp. 348-369). New York: Springer Publishers.Levy, S.M. & Wise, B.D. (1987). Psychosocial risk factors, natural immunity, andcancer progression: Implications for intervention. Current PsychologicalResearch & Reviews, 6(3), 229-243.Lieberman, M.A. (1979). Analyzing change mechanisms in groups. In M.A.Lieberman, L.D. Borman & Associates (Eds.), Self-help groups for coping withcrisis (pp. 194-233). San Francisco: Jossey Bass.Lieberman, M.A. & Bond, G.R. (1978). Self-help groups: Problems of measuringoutcome. Small Group Behavior, 9(2), 22 1-241.Lieberman, M.A. & Borman, L.D. (1976). Introduction. Journal of AppliedBehavioral Science, 12, 26 1-264.243Massingham-Pearce, S. (1986, March). Staying Alive. Woman to Woman, pp. 28-29.Marton, F., Hounsell, D. & Entwistle, N. (1984). The experience of learning.Edinburgh: Scottish Academic Press.Marton, F. & Saijo, R. (1984). Approaches to learning. In F. Marton, D.Hounsell, & N. Entwistle (Eds.). The experience of learning (pp. 36-55).Edinburgh: Scottish Academic Press.Maton, K.L. (1989). Towards an ecological understanding of mutual-help groups:The social ecology of “fit.” American Journal of Community Psychology, 17(6),724-75 1.McClusky, H.Y. (1963). The course of the adult life span. In W.C. Hallenbeck(Ed.), Psychology of adults. Washington, DC: Adult Education Association ofthe USA.McMillan, J.H. & Schumacher, S. (1989). Research in education: A conceptualintroduction. Glenview, IL: Scott Foresmar.Merriam, S.B. (1987). Adult learning and theory building: A review. AdultEducation Quarterly, 7(4), 187-198.Merriam, S.B. (1988a). Case study research in education: A qualitative approach.San Francisco, CA: Jossey-Bass.Merriam, S.B. (1988b). Finding your way through the maze: A guide to theliterature on adult learning. Lifelong learning: An omnibus of practice andresearch, 11(6), 4-7.Merriam, S.B. & Cafferella, R.S. (1991). Learning in adulthood: A comprehensiveguide. San Francisco, CA: Jossey-Bass.Mezirow, J. (1978). Perspective transformation. Adult Education, 28(2), 100-110.Mezirow, J. (1981). A critical theory of adult learning and education. AdultEducation, 32, 3-27.Mezirow, J. (1991). Transformative dimensions of adult learning. San Francisco,CA: Jossey-Bass.Mezirow, J. & Associates. (1990). Fostering critical reflection in adulthood: Aguide to transformative and emancipatory learning. San Francisco, CA:Jossey-Bass.244Miller, E.E. (1978). Feeling good. Englewood Cliffs, CA: Prentice-Hall.Minkler, M. & Cox, K. (1980). Creating critical consciousness in health:Applications of Freiretsphilosophy and methods to the health care setting.International Journal of Health Services, 10(2), 31 1-322.Mishler, E.G. (1986). Research interviewing: Context and narrative. Cambridge,MA: Harvard University Press.Morris, T. (1986). Coping with cancer: The positive approach. In M. Watson & S.Greer (Eds.), Psychosocial issues in malignant disease (pp. 79-85). Toronto:Pergamon Press.Montbriand, M.J. & Laing, G.P. (1991). Alternative health care as a controlstrategy. Journal of Advanced Nursing, 16, 325-332.Newman, M.A. (1986). Health as expanding consciousness. Toronto, ON: C.V.Mosby.Nichol, J.B. (1980). Makers of realities: A theory of paradigm-transition learning.Unpublished monograph, presented to the Adult Education ResearchConference, May 7-9.Osborne, J. (1985). Learning as a change in world view. Canadian Psychology,26(3), 195-206.Owens, R.G. (1982). Methodological rigor in naturalistic inquiry: Some issues andanswers. Educational Administration Quarterly, 18(2), 1-21.Pearson, M. & Smith, D., (1985). Debriefing in experience-based learning. In D.J.Boud, R. Keough & D. Walker (Eds.), Reflection: Turning experience intolearning (pp. 69-84). London: Kogan Page.Pelletier, K.R. (1977). Mind as healer, Mind as slayer. New York: Delta.Powell, T.J. (1987). Self-help organizations and professional practice. SilverSpring, MD: National Association of Social Workers Press.Powell, T.J. (1990). Self-help, professional help, and informal help: Competing orcomplimentary systems? In T.J. Powell (Ed.), Working with self-help, (pp. 31-49). Silver Spring, MD: National Association of Social Workers Press.Pruyn, J.F.A., Van den Borne, H.W., & Stringer, P. (1986). Theories, methodsand some results on coping with cancer and contact with fellow sufferers. InM. Watson & S. Greer (Eds.), Psychosocial issues in malignant disease (pp. 41-52). Toronto: Pergamon Press.245Ray, C. & Baum, M. (1985). Psychological aspects of early breast cancer. NewYork: Springer-Verlag.Riessman, F. (1965). The helper-therapy principle. Social Work, , 27-32.Riessman, F. (1987). Foreword. In T.J. Powell, Self-help organizations andprofessional practice (pp. vii-x). Silver Spring, MA: National Association ofSocial Workers.Roberts, S.J. & Krouse, H.J. (1990). Negotiation as a strategy to empower self-care. Holistic nursing practice, 4(2), 30-36.Rogers, C. R. (1983). Freedom to Learn for the 80’s (rev. ed.). Toronto, ON:Charles E. Merril Publishing.Rogers, J. (1989). Mutual aid as a mechanism for health promotion and diseaseprevention. In Minister of Supply and Services, Knowledge development forhealth promotion: A call for action (HSPB 89-2). Ottawa, ON: Author.Rogers, J. (1987). Mutual aid as a mechanism for health promotion and diseaseprevention (HSPB 88-13). Ottawa, ON: Health and Welfare Canada.Ryan, R.J. & Travis, J.W. (1981). The weilness workbook. Berkeley, CA: TenSpeed Press.Romeder, J-M. and contributors. (1990). The self-help way: Mutual aid andhealth. Ottawa, ON: Canadian Council on Social Development.Schmale, A.H. (1982). Discussion of “Stress and coping as factors in health andillness” by Lazarus. In J. Cohen, J.W. Cullen, L.R. Martin (Eds.), Psychosocialaspects of cancer, (pp. 191-198). New York: Raven Press.Schubert, M.A. & Borkman, T. J. (1991). An organizational typology for self-helpgroups. Journal of Community Psychology, 19(5), 769787.Schwartz, G. E. (1982). Testing the biopsychosocial model: The ultimatechallenge facing behavioral medicine. Journal of Consulting and ClinicalPsychology, 50, 1040-53.Selye, H. (1956). The stress of life. Toronto: McGraw-Hill.Shames, R. & Sterin, C. (1978). Healing with mind power. Emmaus, PA: RodalePress.Siegel, B.S. (1986). Love, medicine and miracles. New York: Harper Row.246Silberfarb, P.M. (1982). Research in adaptation to illness and psychosocialintervention. Cancer, November 1 Supplement, 50, 192 1-1925.Silverman, P.R. (1980). Mutual help groups: Organization and development.Beverly Hills, CA: Sage Publications.Silverman, P.R. (1978). Mutual help groups: A guide for mental health workers.Washington DC: NIMH Monograph, DREW Publication No. (ADM) 78-646.Simonton, C., Matthews-Simonton, S., & Creighton, J. (1978). Getting WellAgain. Toronto: Bantam.Spiegel, D. (1991). A psychosocial intervention and survival time of patients withmetastatic breast cancer. Advances: The Journal of Mind-Body Health, 7(3),10-19.Spiegel, D. (1980). Self-help and mutual-support groups: A synthesis of therecent literature. In D.E. Biegel and A.J. Naparstek (Eds.), Communitysupport systems and mental health (pp. 98-117). New York: Springer.Suler, J. (1984, Winter). The role of ideology in self-help groups. Social Policy,pp. 29-36.Swartz, G.E. & Weiss, S.M. (1977). What is behavioral medicine? PsychosomaticMedicine, , 377-381.Taylor, J.A. (1989). Transformative learning: Becoming aware of possible worlds.Unpublished Master of Arts thesis, University of British Columbia, Vancouver.Teich, C.F. & Telch, M.J. (1985). Psychological approaches for enhancing copingamong cancer patients: A review. Clinical Psychology Review, 5, 325-344.Thoresen, C.E. (1984). Overview. In J.D. Matarazzo, S.M. Weiss, J.A. Herd et al.(Eds.). Behavioral health: A handbook of health enhancement and diseaseprevention (pp. 297-307). New York: Wiley.Toffler, A. (1980). The third wave. Toronto, ON: Bantam Books.Torbert, W.R. (1972). Learning from experience. New York: Columbia UniversityPress.United States Department of Health & Human Services. (1987). SurgeonGeneral’s workshop on self-help and public health. Washington, DC: U.S.Government Printing Office.247Vattano, A.J. (1972). Power to the people. Social Work, 17, 7-15.Vygotsky, L.S. (1978). Mind in society. Cambridge, MA: Harvard UniversityPress.Wallerstein N. (1990). Book review [Review of Participatory planning incommunity health education: A guide based on McDowell County]. HealthEducation Quarterly, 17(1), 119-121.Wallerstein N. & Bernstein, E. (1988). Empowerment education: Freire’s ideasadapted to health education. Health Education Quarterly, 15, 379-394.Watson, M. (1983). Psychosocial intervention with cancer patients: A review.Psychological Medicine, 13, 839-846.Wasserman, H. & Danforth, H.E. (1988). The human bond: Support groups andmutual aid. New York: Springer.Weinert, C. & Brandt, P.A. (1987). Measuring social support with the personalresource questionnaire. Western Journal of Nursing Research, , 589-602.Weiser, J. (1987). Learning from the perspective of growth of consciousness. InD. Boud & V. Griffen (Eds.), Appreciating adults learning: From the learners’perspective, (pp. 99-111). London: Kogan Page.Weiss, R.S. (1976). Transition states and other stressful situations: Their natureand programs for their management. In G. Caplan and M. Killilea (Eds.),Support systems and mutual help: Multidisciplinary explorations, (pp. 213-232). New York: Brune & Stratton.World Health Organization (WHO). (1986). Ottawa charter on health promotion.Ottawa: International Conference on Health Promotion.World Health Organization (WHO). (1984). Health promotion - A discussion onthe concept and principles. Copehagen: WHO Regional Office for Europe.Zuromski, P. (1988). Foreword. In Editors, Body, Mind, and Spirit Magazine(Eds.), The new age catalogue (p. ix). New York: Doubleday.248APPENDIX AData Collection Tools and Ethics Release Forms249CONSENT FORM (Interviewees)Participant 4_____I,__________________, am willing to participate in an interview with JeanRae, and understand that the information I provide will be used as researchdata in her study of the HOPE Cancer Health Centre.ANDI, , wish to remain anonymous and understand thatJean Rae will code the information so that confidentiality is assured.ORI,______ _, choose any information provided by me to beidentified with my name in the printed document of the research study onHOPE Cancer Health Centre.ANDI,__,have received my own copy of the introductoryletter and consent form.Date:250INTRODUCTORY LETTER (Learners)(UBC Letterhead)Dear HOPE Member:My name is Jean Rae. I am currently pursuing a Master of Arts inAdult Education degree at the University of British Columbia. For mythesis, I am gathering information about HOPE Cancer Health Centre, as aself-help organization and about the learning that individuals experience asmembers.Because you have been actively involved in HOPE, I would appreciatebeing able to ask you some questions about your views of HOPE as a self-help group and what being a member means to you. My primary interest isfinding out from you what you learned as a member of HOPE.The material that I collect will be organized and printed in a volumethat will be placed in the library at the University of British Columbia. Thetitle of the project is: “HOPE Cancer Health Centre: A Descriptive andAnalytic Study of a Self-Help Group.” I believe it will be a worthwhileaddition to literature on self-help groups and on the learning and supportneeds of cancer patients.Participating in this study is a choice for you and if you decide not toparticipate in an interview, your decision will in no way jeopardize yourmembership in HOPE. I have several members to invite to be interviewedand I will simply ask someone else. If you do wish to participate you will beasked to sign a consent form however your consent to the interview does notmean you are obliged to answer all the questions. Also you may withdrawat any time. The interview will take about sixty minutes.251In any research project it is important that confidentiality be assuredand the University of British Columbia has asked me to provide you thisassurance. The interview materials will be number coded to protect youridentity and will be destroyed following the data analysis.I would like to add that if you would prefer to have your name used in thestudy, that option is available to you. The following form will help youdesignate your wishes.If at any time you have questions about the interview or the researchproject please telephone me at 737-7547 or my research advisor, Dr. TomSork at 822-5702.Sincerely,Jean Rae252Interview Schedule for “Learners”I assume that your membership in HOPE has had some influence on you andthat you have learned things (by learning I mean a change in your beliefs,attitudes or behaviors). I am interested in what you have learned at HOPE,what difference that has made to you and also how you think it is that thislearning happened.1. First can you tell me about getting a diagnosis of cancer. When did thathappen and what was that like for you?2. How did you find out about HOPE? When did you join? What was thereason that you joined HOPE?3. What would you say are the “beliefs” that are part of HOPE’s program?Had you heard of these beliefs before? If so, where had you heard aboutthem? What do they mean to you now? or What did you hear at HOPEthat has been important to you?4. What activities, events or situations have you found to be helpful? Whyis that?5. Would you say that you learned new things since you joined HOPE? Tellme what you have learned. Is the learning at HOPE different than youwould get somewhere else? Do you think that your way of thinkingabout your cancer has changed as a result of your participation in HOPE?6. Has what you have learned made a difference for you? How? Do youthink that what you have learned has made it easier or more difficultwhen you visit your doctor? What about dealing with your illness related253problems at home?7. When you think of how you learned those things, were other membersinvolved and what was the situation? On a scale of 1-5 how would yourate the importance of the interaction with the other member/s? Whywas this important?8. Have you seen other people at HOPE change over time? Can youdescribe this?9. Is there anything special that you need in order to be a member ofHOPE? What are these? Did you always have them or have you learnedsome things since you joined? How did you learn those things?10. Is your participation in HOPE different than it was when you firstjoined? Has anything helped you to maintain your participation inHOPE? What?11. Did you have an idea of what to expect when you joined HOPE? Is whatyou have been talking about pretty much fit with your expectation?12. What difference does it make that the participants of HOPE are alsocancer patients? (If this has not been answered afready).254INTRODUCTORY LETTER (Veterans)(UEC Letterhead)Dear HOPE Member:My name is Jean Rae. I am currently pursuing a Master of Arts in AdultEducation degree at the University of British Columbia. For my thesis, I amgathering information about HOPE Cancer Health Centre, as a self-helporganization and also about the learning that individuals experience asmembers.Because you have been actively involved in HOPE, I would appreciatebeing able to ask you some questions about your views of HOPE as a self-helpgroup and what being a member means to you. My primary interest is findingout from you what you learned as a member of HOPE.The material that I collect will be organized and printed in a volume thatwill be placed in the library at the University of British Columbia. The title ofthe project is: “HOPE Cancer Health Centre: A Descriptive and Analytic Studyof a Self-Help Group.” I believe it will be a worthwhile addition to literatureon self-help groups and on the learning and support needs of cancer patients.Participating in this study is a choice for you and if you decide not toparticipate in an interview, your decision will in no way jeopardize yourmembership in HOPE. I have several members to invite to be interviewedand I will simply ask someone else. If you do wish to participate you will beasked to sign a consent form however your consent to the interview does notmean you are obliged to answer all the questions. Also you may withdraw atany time.In any research project it is important that confidentiality be assured andthe University of British Columbia has asked me to provide you thisassurance. The interview materials will be number coded to protect your255identity and will be destroyed following the data analysis. I would like to addthat if you would prefer to have your name used in the study, that option isavailable to you. I will be asking you to complete a consent form that willhelp you designate your wishes.I will be contacting you by phone to further discuss your possibleparticipation and to set up an appointment time if you are willing to beinterviewed. The interview will take about sixty minutes. Also, if at any timeyou have questions about the interview or the research project pleasetelephone me at 737-7547 or my research advisor, Dr. Tom Sork at 822-5702.Sincerely,Jean Rae256Interview Guide for “Veteran” MembersThe study that I am doing has a number of aspects to it. I am interested inHOPE as a “learning organization” with a mission, activities, leaders, etc. Iam also very interested in the participation of individuals in HOPE, whatinfluence it has on them and how it is they benefit (if they say they do). Inthis discussion with you I would like to focus on your view of HOPE as anorganization and also your experience of being a participant-leader.1. What would you say the mission of the founders was?2. To what extent do you think the mission of HOPE is met?3. Has the mission changed since the early days of HOPE? If so, what arethe changes and how do you account for them?4. What do you consider to be the successes and difficulties that HOPE hasexperienced in trying to achieve its mission?5. What are the influences that affect the operation of HOPE?6. When you are asked to explain to someone what the benefits of belongingto HOPE are, what do you say?7. What are the contributions to the members in the way of learning?8. What are the things that happen here that help members learn? Whichof these do you consider to be most important? What kind of activitieshave you participated in the most?9. How are the other benefits achieved?25710. I am interested in how it is that you became a leader in this group. Doyou remember what influenced you to take an active leadership role orjust how that happened? Were others involved? Who was and how werethey involved?11. What difficulties do you encounter in helping people here? How do youdeal with these difficulties?12. How long have you been a leader here? Do you believe there are anybenefits to being a leader in this group? What are they?13. When you think of yourself as a leader at HOPE do you think of yourselfas a teacher? What guides you as you work as a teacher/leader?14. Who else do you consider to be teachers here?15. What is the value of the participants in this organization being “peers”?(If this question has not been answered already).258CONSENT FORM (Workshop Participants).Participant #_____I,__________________, am willing to have Jean Rae use material I havecontributed during this workshop and I understand that the information Iprovided will be used as research data in her study of the HOPE CancerHealth Centre.ANDI, , wish to remain anonymous and understand that JeanRae will code the information so that confidentiality is assured.ORI,______ _, choose any information provided by me to beidentified with my name in the printed document of the research study onHOPE Cancer Health Centre.ANDI,__,have received my own copy of the introductoryletter and consent form.Date:259INTRODUCTORY LETTER (Workshop Participants)(UBC Letterhead)Dear HOPE member,My name is Jean Rae and I have been a member of HOPE for five years. Iam currently pursuing a Master of Arts in Adult Education degree at theUniversity of British Columbia. For my thesis, I am gathering information aboutHOPE Cancer Health Centre, as a self-help organization. I am also interested inthe learning that individuals experience as members. The title of my project is“HOPE Cancer Health Centre: A Descriptive and Analytic Study of a Self-HelpGroup” and a copy of the final report will be placed in the library at theUniversity of British Columbia. I believe it will be worthwhile literature on self-help groups and on the learning and support needs of cancer patients.During this workshop I will be a “participant-observer.” In other words I wifibe noting the activities and interactions that take place during the workshop. Iwant to assure you that anything said by you during the workshop will not beused without first getting your written consent. It is also important that youunderstand that you have a choice about consenting to my using what you sayduring the workshop in my study. If you decide to not participate it will in noway jeopardize your membership in HOPE. I will simply exclude anything said byyou from the material I collect during the workshop. In order to simplify theprocess I have designed a consent form which everyone can consider and sign onlyif they wish. Strict confidentiality will upheld if you decide to consent, althoughyou may also choose to be named if you so desire.260I also have a survey that asks for information about the workshop that youare attending. I would appreciate it if you would provide information and remindyou again that providing information for a research study is a choice that youmake and choosing to not participate will in no way jeopardize your membershipin HOPE. Simply do not complete the survey. Completion of the survey signifiesyour consent for the information to be used. To ensure confidentiality, please donot put your name on the survey. The survey will take about ten minutes tocomplete.If you have any questions regarding the research or this questionnaire youmay contact me by phone (737-7547) or my research advisor, Dr. Tom Sork (822-5702).Sincerely,Jean Rae261WORKSHOP PARTICIPANT SURVEYDate______Birth Date_________Sex_____1. When was your cancer first diagnosed? YY MM2. How did you find out about HOPE?_______________3. What helped you decide to come to a workshop?4. What were your expectations for the workshop?5. How well were your expectations met?D very littleD a littleD satisfactoryO quite well0 very well2626. Did you learn anything during the workshop? Yes No____If so, what didyou learn?7. Is there anything you might do now that is different than what you were doingbefore you came to the workshop? Yes — No —Please give examples8. How important to you was having a support person invited?D not importantD a littleEJ just mediumD quite importantLi very important9. What did you like best about the workshop?_______10. What did you like the least?_____________11. Please add your suggestions for further workshops?


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