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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: DESCRIPTIVE A STUDY OF HOPE CANCER HEALTH CENTRE by JEAN BERKELEY RAE B.Sc.N., University of British Columbia, 1963 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department of Administrative, Adult and Higher Education)  We accept this thesis as conforming tojJje required sta dard  THE UN  RSITY OF BRITISH COLUMBIA April 1994 © Jean Berkeley Rae, 1994  ___  ___  an advanced In presenting this thesis in partial fulfilment of the requirements for shall make it degree at the University of British Columbia, I agree that the Library sion for extensive freely available for reference and study. I further agree that permis the head of my copying of this thesis for scholarly purposes may be granted by that copying or department or by his or her representatives. It is understood t my written publication of this thesis for financial gain shall not be allowed withou permission.  Department of  /t’ Li’La  /i’  iL/rj.jit&,’  The University of British Columbia Vancouver, Canada  Date  DE-6 (2188)  /  11  ABSTRACT  Self-help groups have emerged as a system of care for groups of people sharing a common problem or condition. Most of the interest in research came from professionals in mental health and social services. Educators have traditionally viewed self-help groups as outside their domain. The focus of this study is the phenomenon of personal change within self-help groups. This is viewed as “learning with peers.” The subject of the study was HOPE Cancer Health Centre, a non-profit community based self-help organization in Vancouver, B.C. Appropriate to the study of phenomena in their natural surroundings, data collection methods were qualitative in nature. Fourteen in-depth interviews were carried out with members and leaders of the self-help group. Two introductory workshops were attended for participant observation and several pertinent documents were reviewed. A full description of HOPE Cancer Health Centre as a self-help group and as a context for adult learning was developed. To clarify the description of HOPE, a framework of characteristics of self-help groups was developed. It was used to organize data collection and analysis. Compilation and analysis of the findings created a description of HOPE that adds to the understanding of self-help groups as organizations in a larger system of care provision. It also adds to the understanding of HOPE as an organization with the purpose to assist cancer patients who are interested in actively participating in their cancer treatment and recovery.  U’  In order to enhance understanding of adult learning in the context of a selfhelp group, three perspectives from the literature on adult learning were selected for their potential to organize and explain the resulting data. Four important themes emerged from the data on the learning experiences of the members of HOPE. First, the ideology of HOPE, “self as participant in healing,” is the framework of learning and within that frame there are four forms of learning, the forms of transformative learning being the most significant. Second, for the learners of HOPE, the basis of knowledge is their personal experience; therefore, processes of experiential learning are important as well as those of perspective transformation. Third, the affective dimension of the experiential learning process was found to be integral in the process of learning. The fourth theme is “learning with peers,” the innate characteristic of self-help groups. All members interviewed placed high value on their experiences of learning with peers and of learning at HOPE.  Meaningful interpretation of the data resulted from application of  concepts and theoretical propositions from three perspectives on adult learning: experiential learning, transformative learning and situated learning.  iv  TABLE OF CONTENTS Abstract  .  iv  Table of Contents List of Figures  x  .  Acknowledgments  xi  CHAPTER ONE: INTRODUCTION Statement of the Problem Purpose of the Study Site of the Study Research Questions Research Design and Methodology Organization of the Thesis.  1 1 4 5 8 9 11  .  .  .  .  .  .  .  .  CHAPTER TWO: CANCER AND CANCER CARE The Social Reality of Cancer Cancer Health Care The Dominance of the Medical Model in Cancer Health Care Emphasis on Biophysical Care Demand for Rigorous Research Professional as Expert in Treatment Decisions New Age Movement Paradigm Shift Mind/Body Connection Health and Weliness Promotion Personal Responsibility, Empowerment and Education Psychosocial Factors and Cancer Disease Psychosocial Risk Factors as Antecedents to Disease Progress in Research in Psychosocial Care Coping theory Social support  .  .  .  .  .  .  .  .  13 14 16 16 17 18 18 20 21 23 24 26 28 28 29 30 31  V  Programs of Psychosocial Care Psychosocial Risk Factors and Biologic Outcomes Summary CHAPTER THREE: LITERATURE REVIEW Literature on Self-Help Groups Overview of the Literature on Self-Help Groups Terminology Definition of a Self-Help Group Self-Help Group Characteristics Focal Problem Purpose Source of Help Knowledge Base Basis of Power Composition Inputs Origin and Sanction Control Organization Design Other Characteristics Developmental Stages or Life Cycle Processes and Mechanisms Self-Help Group Ideology Experiential Knowledge Research Problems and Directions for the Future Summary of Literature on Self-Help Groups Literature on Adult Learning Overview of Literature on Adult Learning Experiential Knowledge Experiential Learning Processes of Experiential Learning Situated Learning: Legitimate Peripheral Participation Background of “Situated Learning” Legitimate Peripheral Participation  32 35 36  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  38 39 40 41 41 42 42 43 43 44 45 46 46 47 47 48 48 49 50 51 53 55 56 57 58 60 62 63 66 66 67  vi Learning Zone of Proximal Development Transformative Learning Emancipatory Education Transformative Learning Model of Transformative Learning Phase one: Generation of consciousness Phase two: Transformation of consciousness Phase three: Integration of consciousness .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  CHAPTER FOUR: RESEARCH DESIGN AND METHODOLOGY Selection of the Research Method Research Design Identification of Site Characteristics of Participants Participant Selection Methods of Data Collection Review of Documents and Media Materials. In-Depth Interview with the Remaining Founder In-Depth Interviews with Current Staff In-Depth Interviews with Selected Learners Participant Observation. Survey My Own Experience Ethical Considerations Analysis and Interpretation of the Data .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  CHAPTER FIVE: HOPE CANCER HEALTH CENTRE HOPE Cancer Health Centre: Preview Origin  .  .  .  .  .  .  .  .  Purposes Activities Funding and Maintenance HOPE as a Self-Help Group.  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  68 69 70 72 73 75 78 80 80 82 82 83 84 85 87 88 88 88 89 89 89 90 91 91 92 95 95 95 96 97 98 100  vii  Focal Problem Intensity of Feelings Difficulty Expressing Feelings Sense of Loss of Control Lack of Knowledge Limited Resources and Options Purpose Fighting Cancer and Staying Alive Improved Quality of Life Safe Comfortable Place Source of Help Mutual Assistance Leaders Knowledge Base Knowledge of Cancer Care and Recovery Choose to Be Alive Know Yourself Help Yourself Self-Help “Techniques” Positive attitude Expression of emotions Know and Use Resources Being Human Assisting People with Cancer Value of Sharing Safe “Normalizing” Milieu Importance of Peer Relationship Base of Power. Composition Inputs Money New Members Veterans Origin and Sanction .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  100 101 103 104 104 106 107 108 110 111 112 113 115 118 118 120 121 122 124 125 126 127 128 129 130 130 131 133 135 138 138 140 140 142  vu’ Control Leadership Member Input Organizational Design Other Characteristics Developmental Stages or Life Cycle Summary .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  CHAPTER SIX: ADULTS LEARNING WITH PEERS Preview of the Four Themes Three Perspectives of Adult Learning Perspective of Transformative Learning Perspective of Experiential Learning Perspective of Situated Learning Ideology as the Frame of Reference for Learning Four Forms of Learning. Learning within Meaning Schemes Expanding Meaning Schemes Changing Meaning Schemes Perspective Transformation The Process of Perspective Transformation Disorienting Dilemma Peer Group as Reference Group Experience as the Condition of Knowledge Experience as Authority Reflection on Experience Propositional Knowledge Practical Knowledge The Affective Dimension of Learning Being with Peers The Value of Being Peers Sharing Listening Talking Being Encouraged and Getting Support .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  145 146 147 147 150 150 152 154 157 160 160 161 164 165 168 169 171 173 174 178 179 180 181 183 184 186 187 190 194 196 196 197 198 199  ix Associating Practicing and Being Involved Newcomer to Veteran Readiness Accessibility Extension of Life Summary .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  CHAPTER SEVEN: SUMMARY, IMPLICATIONS, LIMITATIONS AND CONTRIBUTIONS Summary HOPE Cancer Health Centre Characteristics Differences Changes Over Time Maintenance of HOPE Members’ Experiences Learning as Participants of HOPE: Learning with Peers Context Activities Ideology Processes Outcomes Implications of the Study Health Promotion Cancer Care Self-Help Groups Adult Education Limitations of the Study Contributions of the Study .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  REFERENCES.  .  .  .  APPENUIX A: Data Collection Tools and Ethics Release Forms.  201 202 203 208 210 211 214  215 216 217 218 219 220 220 221 222 222 223 224 225 227 228 228 229 231 231 234 236 248  x  LIST OF FIGURES  Figure 1: The experiential learning model Figure 2: Model of transformative learning Figure 3: The reflection process in context  64  .  .  77  163  xi ACKNOWLEDGEMENTS I wish to acknowledge with sincere thanks and love the members of HOPE Cancer Health Centre. First, for being there for me when I needed to learn about cancer and cancer care, and second, for participating in this study by sharing with me their own learning experiences. I am especially thankful to Moyra White, the current Director of HOPE and to Barbara Dams and Maggie Vance, the “veterans” who help Moyra provide warm and effective leadership. I am also grateful to Claude 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 guidance encouragement were a welcome combination; Dr. Dan Pratt, who helped untangle more than one problem by using his knowledge of adult learning to stimulate my own thinking; and Dr. Nancy Waxier-Morrison whose knowledge and experience of qualitative research and of cancer research was very helpful and reassuring. I would like to thank Dr. Judith Ottoson for her willingness to read the study and for her meaningful comments. I am very thankful to all my family members for their endearing and continuous support, even while not understanding why the work was taking so long. I especially thank them for their proof reading efforts. I would like to acknowledge Heather Brown for her assistance transcribing the interview tapes and Darcie Rae for her contribution of editing and printing the final publication. I express my appreciation to my long time friend and colleague, Susan Little for her many votes of confidence. I would also like to thank my colleagues at Youville Residence for their support and encouragement. 1 am especially thankful to Sister Rita Kehoe who understands my efforts from the perspective of her own personal experience.  I CHAPTER ONE INTRODUCTION  Statement of the Problem The contribution of self-help or mutual aid groups to the well-being of their members and society at large is well known. Recently, mutual aid received new recognition as it was designated a major health promotion mechanism in a federal government report on health, Achieving Health for All (Epp, 1986, p. 8). Epp states that “through self-help, people come together to deal with the consequences of 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 gain control over and improve their health” (World Health Organization, 1986). Mutual aid as it is practiced ir self-help groups clearly exemplifies health promotion. Most health promotion activities involve facets of adult education. The work of Freire (1970), often called empowerment or emancipatory education, has been popularized as a framework for enhancing community based health promotion programs. Specific examples are studies by Minkler and Cox (1980), rallerstein and Bernstein (1988) and Kilian (1988). However, interest in the application of adult learning models and theoretical concepts has not been readily extended to the study of self-help groups. Social workers, health care practitioners and policy makers have been the primary contributors to the large body of literature of the characteristics of selfhelp groups. Hammerman (1988) suggests that the mental health community has  9  focused on self-help groups as a “unique form of group therapy” (p. 26) and that educators have ignored them because they are not within the traditional boundaries of education. Since the mental health community has paid the majority of attention to self-help groups, models of psychology and sociology underpin the studies on the processes and mechanisms operating within the groups (e.g., Levy, 1976; Lieberman, 1979; Powell, 1987). Only recently have some adult educators focused on learning in self-help or mutual aid groups. Blair (1987) describes processes identified with three orientations of learning theory that could be utilized to foster learning in self-help groups. Hammerman (1988) drew parallels between self-help and adult learning: self-directed learning specifically. Hough (1990) focused on members of Alcohol Anonymous to investigate critical self-reflective learning. The purpose of these studies was to improve professional practice in the area of leadership and facilitation of these groups. The practical results of these studies provide reinforcement for further research on self-help groups as contexts for adult learning. Some recent studies of self-help groups utilized frameworks from organizational theory and ecological theory to understand the development and maintenance of self-help groups (Maton, 1989; Powell, 1990; Schubert & Borkman, 1991). One outcome is the legitimate placement of self-help groups on a continuum of health care services between community care givers (informal) and human service agencies (formal) (Powell, 1990). The basis for this is the recognition that although the processes occurring in self-help groups are similar to  those in professionally led therapeutic groups, members often experience outcomes of a different quality or magnitude. The outcomes are also known to vary from those achieved through one to one professional help (Powell, 1990). One focus of professionals interested in self-help groups is determining these differences. Borkman (1976) proposed that the knowledge base in self-help groups differs because it is experiential knowledge. Experiential knowledge is conceptualized as different from the folk knowledge of lay helpers and the expert knowledge of professionals by virtue of the members in self-help groups having direct 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’s explicit beliefs, but also its rituals, rules of behavior, slogans, and even favorite turns of phrase” (1976, p. 324). He states that because self-help groups are set apart from formal agencies and professionals, they can utilize their independence to develop and promote an ideology that is different and more supportive of its members than that of the mainstream or dominant culture. There is a need to determine from participants of self-help groups the nature of their experiences with ideology and experiential learning, and the value of these elements to members and to the group. The understanding gained is enhanced by examining studies on the related segments of adult learning: experiential learning, transformative learning and situated learning.  4  Purposes of the Study The 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, including its development, its purpose, and its means for achieving its purpose. The addition of an in-depth picture of a group that has not yet been studied adds to the general knowledge of self-help groups. It also provides an understanding of the context for learning by members of a particular group. The second purpose of the study is to enhance the understanding of what happens for the members during their participation in a particular self-help group. In order to achieve this purpose, selected participants were asked to relate their experiences of learning. The data was then viewed through lenses provided by the literature on adult learning. To serve this purpose, selection of the concepts and propositions from literature on adult learning was made on the basis of similarities to processes and mechanisms described in the literature on self-help groups. As a student of adult education, I was professionally motivated to achieve these academic purposes. Because I am a member of HOPE Cancer Health Centre, which is the group I chose to study, I was also personally motivated to meet these purposes. As a member of HOPE, I have had first hand experience n the personal benefits realized through partic1paton. At the time I joined this group, the potential benefits were not altogether unknown to me as I had previously attended, as a health care professional, a workshop offered by the leaders of the  5 group and I became familiar with the approach of this organization. Also, the notions of personal exploration, development of self-awareness and management of stressors- -all important elements of a healthy lifestyle- -were already a part of my belief system and quite important in my life. I was not, however, prepared for dealing with the potential and real threats to my well-being that accompanied my own diagnosis of breast cancer. Nor could I, at that time, have predicted the direction or the destination of my own journey with learning as a result of membership in HOPE. I believe the same is true for other members. I value the opportunity HOPE gave me to learn with a peer group of cancer patients and believe that other members also value their learning experiences. I wanted to study learned in this context. It is partly to honor this group that I have provided a detailed and holistic picture of HOPE Cancer Health Centre. It is important that more is known about the learning that occurs in self-help groups such as HOPE and this study provides meaningful material on that subject. I also wanted this study to convey the value to cancer patients of both giving and receiving help from one another.  Site of the Study HOPE Cancer Health Centre is currently located at 2574 West Broadway, Vancouver, B.C. It was organized through the efforts of Claude Dosdall. In 1978 Claude was told that he had an inoperable brain tumour and had a five percent chance of recovery. Instead of accepting the ‘odds,” Claude focused much of his energy on regaIning his health. Many of his earliest efforts at self-help techniques  6 were a result of attending a workshop given by Dr. Carl Simonton, an American oncologist, and his wife, Stephanie Matthews-Simonton, a psychotherapist. Together they had determined that their cancer patients who routinely performed visualization and other positive health practices while receiving medical treatments 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 his disease. His strong belief in the mind/body connection, the need for stress reduction and the value of personal exploration became the basis for his leadership in the HOPE Cancer Health Centre. His own success at gaining quality of life and life extension gave credence to his beliefs. The self-help organization began in 1980 when Claude searched for and found other cancer patients interested in “helping each other.” This was not an easy task as he was not met with enthusiasm when he first broached the topic at the Cancer Agency. He states: “The head of the B.C. Cancer Control Agency would not support a group whose aim was to encourage people to take responsibility for their own illness and health, believing the patients would feel guilty if they died” (Dosdall and Broatch, 1986, p. 86). He was eventually helped by a nurse at the Cancer Control Agency (now called the B.C. Cancer Agency) who had taken the Simonton Therapist Training Program. The reasons given by Claude for wanting to be with other cancer patients was a desire to have his situation understood, and to receive positive encouragement in place of “the sympathy and patronization so commonly given to  7 cancer patients” (Dosdall, 1984, p. 12). His view was that positive talk and understanding could be the most powerful medicine and he had a strong desire to replace the despair familiar to most cancer patients with hope. In the Simonton group, he had been told of the value of support. He was also told of the value of clarifying life purposes and had included in his personal list of goals the desire “to work with people in a group workshop setting” (Dosdall & Broatch, 1986, p. 25). Although the activities of HOPE have evolved over time, the services at the HOPE Cancer Health Centre fall into two categories: informal activities in the office and more formal education programs. As a “store front” operation, HOPE’s doors are open to cancer patients on a drop-in basis. All staff are cancer patients and interrupt their office work to answer 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 knowledge about their kind of cancer and about treatments, both conventional and alternative. Staff are often able to connect new members with others having the same condition or treatment. Weekend workshops are held on a monthly basis and attendance at one of these is the basis for beginning membership in HOPE. Interested persons are asked to bring their spouse or another support person if possible, as it is believed that support is one of the critical elements in cancer care. A fee is charged for this workshop, but advertisements state that financial support is available. Workshops cover the topics considered critical to “self-healing” for cancer patients  8 and provide opportunities for cancer patients and their support persons to explore new ideas and to experience, in the process, the affective benefits of mutual aid.  Research Questions In order to understand about HOPE Cancer Health Centre as a self-help group and as the context for learning experiences of the members of HOPE, a full description is needed. Understanding of the phenomenon of adults learning in the context of a self-help group must first be appreciated through a collection of the experiences of members in the situation. To achieve the purposes the following questions 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 have the 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?  9 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 a result of participation in this group?  10.  What is the nature of members’ growth or movement, if any, which members attribute to HOPE?  Research Design and Methodology The design and methodology or the research reflect a desire to capture the process of learning in the context of a self-help group. Included in the design is the choice of the research tradition or perspective to be followed and the phenomenon to investigate. Specifying the research methodology and the format of data collection and analysis was also required. Research perspectives are linked to different ways of thinking and knowing and about the world. The major philosophical traditions have differing assumptions. The naturalistic-phenomenological philosophy assumes that meaning is subjective and is constructed personally and socially through individual and collective definitions, that there are multiple realities and that phenomena are best understood from the perspective of the participants (McMilan & Schumacher, 1989). In the naturalistic view, the environment is not static and readily observed. Experience is inextricably linked to the environment and meaning is contextual. Within this tradition the view of the observer is intertwined with the phenomenon and acts of observation and  10 listening are interactive. The naturalistic view is different from the traditional positivistic paradigm which assumes that “what exists can be extrapolated from its environment and, because it exists, it exists in some measure and, thus, can be quantified” (Owens, 1982, P. 4). Observations in this paradigm are considered to be objective. The naturalistic view, with its qualitative approach, is most suitable for study of a self-help group as a part of the health care system and as the learning context for its members. The qualitative approach is appropriate to a study seeking to understand holistically a phenomenon that has subjective, interrelated and situated meanings  (Weiser,  1987). Careful study of one example of a phenomenon is the  case study method, which  iS  viewed as the design of traditional qualitative  research. Merriam states a case study offers a means “of investigating social units consisting of multiple variables of potential importance in understanding the phenomenon” (1988a, p.32). The phenomenon under study is HOPE Cancer Health Centre, whose members have in common the disease of cancer. There are two perspectives taken. One focuses on the characterstcs of the group and the other focuses on the adult learning in the self-help group. For the second perspective the case shifts to the individual members of HOPE. Both perspectives are contextual and are suited to use of methods which achieve an understanding from the participants’ perspective. Useful methods to collect qualitative data are those used by ethnographers: in-depth interviewing and participant observation. The  U phenomenon is not static and it is acknowledged that actions of the researcher create changes  ifl  the phenomenon under study.  The central method of data collection was in-depth interviews of selected members of HOPE. Other methods of data collection were participant observation at the HOPE office and two weekend workshops and review of articles, HOPE newsletters and the HOPE video. In order to provide a comprehensive description of HOPE, a framework of characteristics of self-help groups was developed through study of the literature. Literature on adult learning was examined for concepts considered useful for focusing and interpreting the data derived from interviews about the member& experiences of learning in the group. The concepts and propositions selected were intended to help focus the data collection and assist interpretation rather than predict outcomes. An interactive process of studying the data and the literature began during data collection and continued to completion of the study. A need for further exploration of literature was anticipated but was not necessary.  Organization of the Thesis The thesis is organized in seven chapters. The first chapter provides an overview of the research problem and an introduction to the research design. The second chapter  iS  devoted to an examination of the social context of care  for cancer patients. Chapter Three is compromised of a review of the literature on self-help groups and adult learning that was relevant to the study. The  12 methodology for the study is discussed in Chapter Four. Chapter Five describes HOPE and its characteristics as a self-help group. Chapter Six describes and lnterprets the data on the learning experiences of HOPE’s members in the context of the self-help group. A final chapter provides a summary and discusses mphcations of the research.  13 CHAPTER TWO CANCER AND CANCER CARE  There are three large fields of study that provide background to this study of the HOPE Cancer Health Centre: cancer health care, self-help groups, and adult learning. In order to provide a comprehensive and holistic view of this organization and what it means to the members, literature from each of these areas will be reviewed. Literature related to cancer and cancer health care is the focus of this chapter. To understand the existence and purposes of HOPE as a self-help health centre for cancer patients, it is necessary to have an understanding of the context of cancer health care. From the vast amount of literature on cancer and cancer care, some was selected in order to provide a perspective on the care for cancer patients in cancer control agencies and in the community. This included a review of the major factors that influence, over time, the provision of this care. The factors can be grouped under three main headings: dominance of the medical model in cancer treatment centres, the New Age movement and notable research results in the area of psychosocial care and cancer risk factors. As introduction to this chapter, a brief description of the ‘aura” or socially constructed reality of cancer is presented.  14  The Social Reality of Cancer Cancer describes a disease process of living cells growing and changing at an unnatural rate, losing their capacity for normal functioning (Cunningham, 1985). The disease process is viewed as being out of control and therefore cancer is known as a fatal disease. There is an aura that surrounds a diagnosis of cancer that includes a dread of death and the worst scenarios regarding treatments (Spiegel, 1991). The tendency of physicians and researchers to focus on the acute aspects rather than the chronic nature of the illness helps perpetuate this view of cancer as the worst disease one can have (Silberfarb, 1982). In fact, the many cancer diseases vary greatly both in the rate and extent of their natural progress and in the variety and efficacy of available treatments. For some cancers there are high rates of recovery and treatments that are not stressful, even though, the dominant public view or social reality is that cancer is a horrific disease to be equated with insufferable treatments and eventual death (M. Cohen, 1982). The common feelings of new cancer patients are: fear that cancer is inherently horrible and unnatural, pessimism about survival prospects and fear that 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 a punishment (Brewin, 1986, p. 91). The strength of these feelings is evident in the fact that persons with cancer disease are often referred to as “cancer victims.” The aura of cancer contributes not only to fear, anxiety and depression among cancer patients but also to feelings of isolation and uncertainty. Uncertainty is grounded in the lack of scientific knowledge of specific causes and a  15 lack of definite information about the efficacy of treatments (Pruyn,  Van  den  Borne & Stringer, 1986). Some factors have been isolated as “causes” of cancer but extensive research has failed to produce a simple cause and effect formula. For example, the correlation of cigarette smoking and lung cancer is significant enough to demonstrate a relationship but the fact that not everyone who smokes cigarettes 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 means that most cancer patients are faced with questions they do not know the answer to and 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 has been made. Still, most cancers are treated with one or a combination of surgery, chemotherapy or radiation. Debilitating side effects from medications and radiation, and disfigurement from surgery are not uncommon experiences of cancer patients. The prospect of treatment creates threats to body integrity and comfort and combined with the uncertainty of outcomes, adds significantly to the psychological distress of cancer patients (Teich & Telch, 1985). A feeling of isolation is instigated by the threats related to the diagnosis and is fed, especially in North America, by the dominant values of independence and self-reliance. These values are endorsed by the media where individuals are  16 portrayed “Rambo-like” and expected to conquer insurmountable odds Montbriand & Laing, 1991). All these notions about cancer meld to form a socially constructed reality that 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, shapes the further experiences for individuals with cancer. The actual experience of individuals is also influenced by the etiology of particular kinds of cancer and the variety and accessability of services that are provided. Influences on the provision of care for cancer patients are considered in the next sections.  Cancer Health Care There are certain factors that have significantly shaped the provision of services over time, and these factors will be reviewed. They can be grouped as: dominance of the medical model in cancer treatment centres, progress and prominence of research on stress and other psychosocial factors and illness, and popularization of the mind/body connection by the new age movement. It must be noted 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 Care As the majority of care for cancer patients is provided within health care institutions, under the direction of specialized physicians and surgeons, the  17 influence of the methodology of medicine has been a dominant influence. Schwartz (1982) suggests that medicine is developmental and defines four stages based on work by Pepper (1947, cited by Schwartz, 1982). The stages he specifies are: the categorical labelling stage, the mechanistic stage where specific causal mechanisms are sought, the contextual stage where attempts to understand complex interactions are dominant and the organistic stage where recognition is given to multidimensional causality and reciprocal influences. Movement through these phases is not a tidy linear progression and while there are definite signs of evolution to the contextual and organistic phases, in hospitals and cancer control agencies the mechanistic stage is still dominant. The features of the mechanistic phase, also called the medical or biophysical model, are: emphasis on the biophysical body as the focus for diagnosis and treatment of disease, a positivistic approach to research into disease causation and the efficacy of treatments and authority of the “expert” professional in decision making related to care.  Emphasis on Biophysical Care The main purpose of medicine is to cure the body of disease. Based on a reductionist perspective which separates body, mind and spirit into distinct entities, the medical model focuses on the biophysical body for both diagnostic and treatment regimes. While the benefits of care and the advances in medical treatment for cancer patients must be highly acclaimed, emphasis on treatments has resulted in a tendency to ignore social and psychological factors in the provision of care Montbriand & Laing, 1991).  18 Demand for Rigorous Research The medical model is grounded in a positivistic approach which supports a model of research based on proving results through experimentation. Research carried out in the various cancer treatment departments (radiology, chemotherapy, surgery) is grounded in scientific methodology and there is an expectation that all research will conform to experimental models and demonstrate evidence of benefits (Green, 1984). Schmale claims his biological and medical science peers need “convincing evidence of predictive relationships achieved by means of simple, brief quick and clear-cut procedures or instruments” (1982, p. 192). The provision of educational and psychosocial services for cancer patients has lagged because research in these areas has only begun to provide hard data and because these departments compete with the other sectors of cancer treatment for limited funding (Green, 1984). As well, there has been a lack of acceptance of “unproven” treatments such as acupuncture, herbal and vitamin therapy and meditation that are health enhancing for some (Thoreson, 1984).  Professional as Expert in Treatment Decisions In the medical model, the physician is the technically competent expert and as such is the principle decision maker for the treatment of the patient. This establishes a “magic bullet” approach to care which places all the responsibility for healing with the professional. Patients are often unwittingly unaware of ways they can be involved in the enhancement of their health (Dosdall, 1984). Provision of information about proposed treatments has become standardized to enable  19 patients to provide an informed consent to treatments but information about all treatment options is not always presented. As well, in many cases the patient is not engaged in exploration of the options. Instead of participating in the decision making process, patients commonly assume “sick role” behavior with accompanying unquestioning compliance (Roberts & Krouse, 1990). Current definitions of health and wellness emphasize the importance of an enabling process to foster personal responsibility and feelings of control in health care transactions (Epp, 1986). Some physicians and other interdisciplinary team members, such as nurses and social workers, are able to promote these principles but it is known to be difficult within the authoritarian models of care (Thoreson, 1984). Within this frame of care provision, assessment of treatment options is based on criteria of legitimacy established by the medical authority. Therefore, information about alternative treatments is censured and patients wanting to pursue them are often discouraged. The labelling of treatments outside the domain of medicine as “unorthodox” or “unproven” (Thoreson, 1984) is evidence of this. Obviously, only the legitimate treatments are available in the cancer control agencies, although some other treatments are offered by physicians in the community. Cancer patients do avail themselves of complementary treatments in holistic health centres and vitamin and herb outlets locally and sometimes patients travel to clinics in other countries that offer specialized treatments.  20 New Age Movement Social transformation has created a miieux for change in the care of cancer patients. This social transformation has been called the new age movement (Zuromski, 1988) and it has been widely written about. Popular books referring to the topic are: The Third Wave (Toffler, 1980), The Aguarian Conspiracy: Personal and Social Transformation in the 1980s (Ferguson, 1980) and The Turning Point (Capra, 1982). The underlying theme of the writers is one of social and personal transformation. Specific aspects of the transformation range across a large spectrum of issues and include health care. There are underlying themes of unity, individual liberation and empowerment. Social transformation is caused in part by the movement of society from an industrial base to an information base. On the 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 to health and healing; the integration of Western and Eastern approaches to psychology and psychotherapy; a new conceptual framework for economics and technology and an ecological and feminist perspective which is spiritual in its ultimate nature and will lead to profound changes in our social and political structures (1982, p. 16). This movement, which can be called a paradigm shift because the underlying belief system is changing, has had certain influences on health care.  21 Paradigm Shift The rational-empirical view of the world has been the dominant model for the last century. From this perspective, the dimensions of human experience are reduced into mind, body and spirit and treated as separate and distinct entities. In the rational-empirical world, reality is understood objectively and is measured and evaluated quantitatively. In contrast, the new age view as discussed in the Aquarian Conspiracy (Ferguson, 1980) is one of holism. Humans are viewed as unified beings with dynamically related emotional, social, cognitive and spiritual dimensions. It is interesting to note that these beliefs are not new; writings at the time of Hippocrates give evidence of this view. When humans are viewed as unified systems, emphasis is placed on the need for homeostatic balance in the body. Further, it is believed that when homeostasis is achieved there are related “good feelings” (Bennett, 1987). Within this frame of transformation, another important influence on health has been progression in the field of psychology. There has been a transition through the schools of psychoanalysis, behaviorism and humanism to transpersonal psychology. Transpersonal psychology includes aspects of the other three fields. It is based on the view that the individual is a “unified, integrated self, 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 seen as inter-related and unified. These shifts in humans’ perspectives of self, of society and of the universe have  influenced both health and illness care. Newman identified the following  99  important changes related to underlying beliefs about illness and health: The shift is from treatment of symptoms to a search for patterns, from viewing pain and disease as wholly negative to a view that pain and disease are information; from seeing the body as a machine in good or bad repair to seeing the body as a dynamic field of energy within other fields; from seeing disease as an entity to seeing it as a process (1986, p. 17). The new age movement has influenced health care for individuals in several ways, One way is by providing a new set of assumptions about human functioning and about health. Interest in heahng with the mind is supported by the belief in the unified view of humans. A second way results from new trends in health and wellness promotion. A related influence is a new emphasis on personal responsibility and empowerment. Care for cancer patients is commonly centred in large hospitals or specialized agencies for cancer treatment. These institutions exist within a larger context 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 outside influences. Individuals have, however, been influenced by personal awareness of the new age paradigm shift. This awareness has been facilitated by publication of an enormous number of books related to healing and self-help. Some cancer patients might have been attracted to the new views on health and on healing prior to the implementation of innovations in the health care agencies.  Mind/Body Connection Interest in the mind/body connection was popularized with the publication of books such as: Mind as Healer, Mind as Slayer (Pelletier, 1977), Healing with Mind Power (Shames & Sterin, 1978) and Feeling Good (Miller, 1978). One of the most popular books has been Anatomy of an Illness as Perceived by the Patient by Norman Cousins (1980). This book told of the author’s experience of using laughter to promote healing. He watched reruns of humorous movies during a period of serious illness and reversed the debilitating effects of a collagen disease called ankylosing spondylitis. Two books that focused specifically on cancer disease 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 the belief in unity of the mind, body and spirit; examples include: meditation, visualization, biofeedback, self-hypnosis and self-imagery. These techniques are often called self-help techniques because they can be practiced on oneself. Dream analysis, journal keeping and varieties of psychotherapy were often recommended because of awareness of the power of the unconscious on behaviours and therefore on health. One other way the new age movement may directly influence health care for individual cancer patients is the increased popularity of specific non-traditional treatments viewed to both enhance health and promote healing. They are variously called “alternative,” “holistic” and “complementary medicine” (Bennett, 1987). Acupuncture, reflexology, massage therapy, naturopathic medicine and  9,  Chinese herbal therapy are some examples. The view of humans as holistic supports the notion that healthy interventions in one dimension can and will promote healing in the other dimensions. Individual practitioners of these techniques are often called holistic health practitioners although licensing has not been well established. Yoga teachings and acupuncture are old traditions in the eastern world and demonstrate that the holistic view has been dominant there for a long time. However, the reductionist view is still dominant within the institutions of health care delivery. Therefore, alternative therapies that are not consistent with the reductionist view become labelled as unorthodox, inappropriate, unproven and questionable (Thoreson, 1984). This creates tension for patients wanting to use these therapies as adjuncts to medical treatments, or use them instead of the sometimes invasive interventions of traditional medicine.  Health and Weliness Promotion Policy 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 report heralded a new era of thinking that placed responsibility for health on individuals. This emphasis on individual responsibility for health has since been criticized as being incomplete; newer health promotion models include social and environmental factors as equally important influences on health. The newer  model 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 of health 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 one hand to realize aspirations or needs and on the other hand, to change or cope with the environment” (WHO, 1984, P. 3). Attention to health risk factors created a wave of interest in individuals potential for enhanced health through improved lifestyle. A number of books have popularized this trend. High Level Weilness (Ardell, 1977) and The Weilness Workbook (Ryan & Travis, 1981) are two commonly referred to and still popular publications. They provide questionnaires for assessing lifestyle and practical information on ways to enhance health, such as stress management, exercise programs, communication and relationship skills and spiritual growth. In these books, health and weliness promotion was focused on efforts to reduce the impact of known risk factors such as smoking, obesity, lack of exercise, over-consumption of alcohol and reckless driving. Furthermore, claims were made that replacing “bad” lifestyle habits with good ones would not only reduce the incidence of disease but would also move people toward achieving a high level of personal 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 care facilities. Guidelines are updated as more research is done. For example, there  26 are now diet guidelines for prevention of heart disease and cancer disease. Advances in technology have resulted in blood tests that measure immune system competency. Specialized research that determines the impact of several different factors like nutrition, cognitive changes and social support on the immune system have been undertaken (Levy, 1990). There has been more attention paid to social and environmental risk factors in health. For example, both institutions and communities have implemented by laws prohibiting the smoking of tobacco in public areas. Policy makers have extended their concern beyond protecting individuals against disease toward maintaining a healthy environment (Epp, 1986). In all these efforts there is a theme of increased personal responsibility and empowerment.  Personal Responsibility, Empowerment and Education Attention to healthy lifestyle changes has prompted a belief that people can and 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 for community health and global health. This belief is problematic because authority and responsibility has traditionally been held by power groups such as governments, elite members of society and some professional groups. The issue of empowerment is not excluded from discussions related to health and is partially endorsed by the Epp Report (Epp, 1986). The three mechanisms intrinsic to health promotion were identified as self-care, mutual aid  27 and a healthy environment. Fostering public participation is named as a strategy along with strengthening community health services and coordinating public policy (Epp, 1986). In order to help mobilize community groups to identify their specific health problems and generate action plans, a model of emancipatory education (Freire, 1970) has been used m some areas Minkler & Cox, 1980). Models that encourage communIty organizatIon, public partcipaton and social action are viewed as most effective. Health related problems such as poor housing at the community level or lack of jobs and unstable economies in certain regions are viewed as socially, culturally, economically and politically founded. Models of ernancipatory education and community development support beliefs that indvduals should be advocates and equal partners in health care and they foster a consumer approach to health care (Wallerstein, 1990). This consumer approach puts more onus on individuals to be informed about their health care needs. It also impacts health care providers when they have patients who desire to be participants in care planning and some that are no longer willing to be passive recipients of care in an authoritarian and paternalistic health care system. While community and group empowerment has been a consideration in literature for some time (Freire, 1970), individual or personal empowerment has not received the same attention. Self-control in planning personal health care is portrayed as desirable and worthy in the media. Encouragement of this behaviour is based more on a cultural tradition of independence and self-reliance. Study of relationships between perceived control and locus of control and personal health  outcomes  iS  a current area of Interest (e.g., Montbriand & Laing, 1991). The focus  tends to be on control as a factor that influences a person’s capabilities for changing health behaviors. Sense of personal power as a direct and positive influence on health outcomes requires more study. Researchers interested in psychosocial risk factors and cancer disease have provided some ground work for study of this nature since their research focuses on the mediating pathways between behaviour and disease (Levy, 1990).  Psychosocial Factors and Cancer Disea Writers have for some time claimed that there are common psychological antecedents to the development of cancer disease (e.g., LeShan & Worthington, 1956; Greene, 1954). Studies on the influence of similar factors on the progression of disease has raised the credibility of these works (Borysenko, 1982; Cunningham, 1985; Levy, 1990; Ray & Baum, 1985). Psychosocial factors most frequently listed in the studies are: experience of a lOSS, separation, frustration of life goals, inadequate expression of negative emotion, a tendency to depression and dependency and inadequate social support.  Psychosocial Risk Factors as Antecedents of Cancer Studies on psychosocial antecedents have been retrospective in design. They suffer methodological criticisms because there is no way of correlating other variables such as age, or class or to take into account relationships of the psychosocial factors with other possible influences such as environmental factors  29 (Ray & Baum, 1985). However, the retrospective studies do have value because the characteristics of cancer patients described can be tested prospectively and in animal model systems (Borysenko, 1982). For cancer patients the notion of a “cancer personality” could either encourage self-blaming and victimization or be used as a stimulus for selfawareness and personal growth activities which can be viewed as health enhancement (Cunningham, 1985). This information is not usually endorsed at cancer control agencies for fear of the former (Cunningham et al, 1991). It is though, available in the popular press. For example, You Can Fight For Your Life (LeShan, 1977), tjn WellA 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 that cancer is related to stress and to a passive or lack of expression of negative emotions. They also present strategies or tools that can be used to bring forth one’s own healing powers.  Progress in Research in Psychosocial Care Cancer patients have been the subjects in a large amount of the general research on psychosocial interventions because cancer is a disease of high incidence and there is a high prevalence of psychosocial morbidity associated with it. Selye’s work, Stress of Life, was published in 1956 and it demonstrated relationships between stress and biologic outcome. Still, provision of psychosocial care for cancer patients has been largely motivated by a search for improved  30 outcomes in the area of psychological and social functioning. Programs have not been viewed as adjuncts to treatment of the disease. The majority of work in this field has been based on models of psychopathalogical stress theories, such as social network theory, biophysical theory 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 this study but brief consideration will be given to coping theory and to the concept of social support.  Coping theory Because of the severe stresses related to cancer disease and its treatments, the dynamics of coping have been a major focus in research. Coping has been defined as “efforts, both action-oriented and intrapsychic, to manage (that is, master, tolerate, reduce, minimize) environmental and internal demands, and conflicts among them, which tax or exceed a person’s resources” (Cohen & Lazarus, 1979, p. 219: cited in F. Cohen, 1984). Characteristics that influence an individual’s ability to cope are listed as: cognitive appraisal of the stressor, past experience, coping style, internal or external locus of control, self-concept and self efficacy, emotional control and supports (Rogers, 1989; Schmale, 1982). Defined as modes 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. Only  31 after a large amount of naturalistic research is done will commonalities be revealed to the extent that evaluations can be made regarding best approaches.  Social support The relationship of social support to stress and illness has recieved central attention in study of this complex area because there is empirical evidence for a positive relationship between social support and health (Bloom, 1982a; Wasserman & Danforth, 1988). Describing the construct of social support as multidimensional, and ambiguious, Bloom found the definitions she reviewed to most 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 by House (1981). The types he discerned are emotional support (caring, concern esteem); informational support (advice, information, suggestion); appraisal support (affirmation, feedback) and instrumental support (practical help, money) (cited by Rogers, 1987, p. 6).  A simple though global definition of support that is  acceptable for this study is provided by Weiss (1976). Support is “communication, sometimes nonverbal, by the helper, that the helper’s training, experience, and understanding are at the service of the distressed individual as the later struggles to regain equilibrium” (p. 215). Bloom concludes that “social support is the strongest predictor of coping response and has indirect effects on all three measures of adjustment: self-concept, sense of power and psychological distress” (1982a, p. 1336). Social support is  32 thought to mediate psychological distress, facilitate coping and adaptation and decrease vulnerability to disease (Goldberg & Cullen, 1985; House, 1981; Weinert & Brandt, 1987).  Programs of Psychosocial Care Some psychosocial or human services have always existed in treatment cancer centres to help ameliorate the distress and morbidity from the stresses associated with the disease of cancer and its treatments. From this base, there has been a continual expansion in the amount and variety of programs of psychosocial care within agencies and in the community. The literature on psychosocial interventions indicates a wide variety of program 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). Some programs include members of patients families (Berger, 1984). Groups programs promote dynamics that are not as available in individual encounters. They are also considered to be more cost effective. Several approaches are used to help improve the psychosocial health of cancer patients. Patient education can include information about the disease, about the treatments and about how to live with the disease. The programs may include specific skills such as colostomy care, diet management or routine breast self examination. Sometimes interventions are directed for specific problems experienced by cancer patients; such as pain, nausea, vomiting, disfigurement and  33 emotional distress (Holland, 1984). More frequently programs are designed to help 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 are provision of support and teaching of cognitive behavioral skills. Cognitive strategies such as logical analysis, reframing, problem solving and effective regulation are examples of specific techniques demonstrated (Wasserman & Danfort, 1988). Cognitive appraisal or comparison with others is emphasized as a process in support groups. Studies comparing the efficacy of these two approaches have been done by Telch and Telch (1985) and Levy and Wise (1987). Both these studies found the effects of the skill training to last longer than the effects of the support group. The use of relaxation and mental imagery has only recently been included in programs offered at cancer control agencies (Blake, 1985; Bereson, 1988; Berger, 1984; Cunningham et al, 1991). Often referred to as the “Simonton method” (Simonton, Matthews-Simonton & Creighton, 1978), these techniques are considered controversial because they have been publicized as an effective adjunct to medical treatment and critics say there is a lack of material evidence of improved outcomes. Also, questions have been posed about the ethics of raising hope about “psychological cures” when the techniques appear to be based on the use of positive thinking skills (Holland, 1984). Leaders of groups where these techniques are used suggest that there are direct benefits for the patients well being and that they also provide patients with a sense of control (Bereson, 1988;  34 Cunningham, et al, 1991). Cunningham and his colleagues recommend terminology like “engaging” or “connecting” with one’s disease and believe helplessness and hopelessness can be avoided when people have an option of acting on their own behalf (1991, p. 49). All of the above studies involved professional leadership, however, the benefits of peer support are well acknowledged. Bloom states that “because peer group 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 the experience of their illness are termed “veterans” (Holland, 1984). In this large number of studies, the research inadequacies are identified as the absence of control groups, evaluation bias and treatment related issues. Comparison of results of different studies is difficult and is attributed to variability in the evaluation of outcomes and lack of consistent use of measurement tools (Telch & Teich, 1985; Watson, 1983). Use of broad concepts such as well-being, individual coping, and social support compound the difficulty of achieving specific conclusions. Directions for future research specify the need for methods of defining the individuals at risk, determining the effectiveness of various methods and designing more specialized programs for meeting the needs of those groups and finding alternative sources of social support (Bloom, 1982a). Watson (1983) concludes that blanket services are not appropriate and must be more individualized to be cost effective. To this end, application of the concept of triage  35 has been proposed as a useful way to design pathways to various support programs for cancer patients (Green, 1984).  Pychosocial Risk Factors and Biologic Outcomes Most research in the area of psychosocial risk factors has been focused on outcomes in social and emotional health. More recently, biologic or physical outcomes have become a focus in this type of research. Progress in this area of research had been slow, partly due to the complexity of the hypothesized processes, partly due to the lack of measurement tools in the outcome areas and partly due to limited resources for research in this so called “soft” area (Green, 1984). More recognition for professionals interested in the behavioral aspects of cancer was achieved following the 1975 meeting of the National Cancer Institute. This nation wide organization in the United States chose the behavioral aspects of carcer as its central focus that year Borysenko, 1982). Of significance, in this area of research, is the recent demonstration of relationships between psychosocial factors and cell mediated immunity and the neuroendocrrne system. Advances in the measurement of the factors and the high level of scientific sophistication in these areas has assisted researchers to identify intricate interactions although, as yet, the mediating mechanisms are only tentatively 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 and repressed expression of negative emotions (Borysenko, 1982; Levy, 1990). The  36 interrelations of the factors are complex, although prospective models have been proposed (e.g., Levy, 1990, Greer & Watson, 1985). Another breakthrough in this area is the recent publication of the findings of a follow up study of an controlled experiment with women attending a professionally led support group. This longitudinal study determined that women in the treatment group lived twice as long as those in the control group (Spiegel, 1991). Knowledge that specifically planned psychosocial interventions can influence the progression of disease has provided impetus for both the design of specialized programs and more specific research goals (Levy & Wise, 1987; Moms, 1986; Teich & Telch, 1985). As a result, programs of psychosocial intervention in centres of cancer treatment are becoming more prominent and are broader in scope.  Summary In North America, care for cancer patients has been directed by the science of medicine, with emphasis on physical manifestations and treatments aimed at controlling physical disease. There are other factors that influence the needs and wants of cancer patients for health care. The high mortality rate, the uncertainty of treatment outcomes and the morbidity of treatments associated with cancer disease increase the need for psychosocial care. Also impacting the cancer patient is knowledge of relationships between stress and illness and popularization by the New Age movement, of approaches to self-healing. Reports by medical  37 practitioners (Simonton, Matthew-Simonton, & Creighton, 1978; Siegel, 1986) of positive effects from use of some mind/body techniques have increased awareness and interest in this area. Level of satisfaction with formal services and awareness of their own needs and wants in relation to care and treatment can influence a cancer patient to seek resources outside of a cancer treatment centre, such as a self-help group.  38 CHAPTER THREE LITERATURE REVIEW  In order to fully understand HOPE as a self-help organization, a broad overview of literature on self-help groups is provided. It is important that the descriptive portion of the study of HOPE be such that it can be contrasted and compared to other self-help organizations. Recent literature on self-help groups has utilized organizational theory to create models that allow comparisons both among self-help groups, and between self-help groups and other care giving systems (Powell, 1990; Schubert & Borkman, 1991; Suler, 1984). Literature on self-help groups was reviewed with the purpose of developing a framework for a comprehensive description of HOPE as a self-help group. The literature on selfhelp 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 internal workings of these organizations have largely been explained utilizing social and psychology theories (Levy, 1976; Lieberman, 1979). Important propositions made in the literature on self-help are mirrored in some literature on adult learning. It was this connection between self-help and adult learning that gave use to this study. The focus of the research became the study of the experiences of HOPE members as adult learners in the context of a self-help group. This focus triggered a search for literature on adult learning with potential power to interpret the changes experienced by self-help group members. Selection of the literature on  39 adult learning was directed by elements found to be common to both sets of literature. Review of this literature forms the second section of this chapter.  Literature on Self-Help Groups There 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 and as a part of a larger helping system. This provides background to the study and a framework for identifying characteristics to be used to focus the description of HOPE as a self-help group. Second, the literature on the inner workings of selfhelp groups provides direction to the related literature on adult learning. Third, study of this literature provides information on the approaches used in previous studies. The literature review is organized in the following manner. A brief history and overview of the literature on self-help groups is presented first. A discussion of terminology and a definition of self-help group is followed by a section on characteristics of self-help groups such as purpose, origin and sanction, source of help, knowledge base, basis of power, composition and control. A focus on the internal processes and mechanisms of self-help groups includes special attention to the concepts of experiential knowledge and group ideology. These concepts are highlighted because they provide a bridge to the literature on adult learning and ultimately to understanding learning in the self-help group context. The literature review on self-help groups is completed with a brief overview of the difficulties identified in previous research studies. Literature focused on the  40 social planning and policy issues of self-help groups is not included in the review.  Overview of the Literature on Self-Help Groups The emergence of self-help groups became recognized as a social phenomenon of significant proportion in the early seventies. The amount of service and help provided by these groups to their members is vast. In fact, selfhelp groups mushroomed so fast, they not only attracted but demanded attention from professional human service providers (Katz, 1970). The interest is exemplified in a “special issue” of The Journal of Apphed Behavioral Sciences (September, 1976). The introduction affirms “a commitment to understanding processes of individual and social interaction and change, and a belief that people banding together in small and large social systems can provide one another with needed resources for individual and social development” (Lieberman & Borman, 1976, p. 261). Further documentation of the research on self-help groups appeared in a special issue of Social Policy (1976), and in three major books (Caplan and Killilea, 1976; Katz & Bender, 1976; Gartner & Riessman, 1979). The major contributors to the field at that time are those whose articles appear in these series, for example: Antze, Borkman, Katz and Bender, Levy, Durman, Silverman, Gartner and Riessman. Their writings were complimented with a comprehensive literature review by Killilea (1976). The early nineties has brought a renewal of interest in self-help groups with a “special issue” of the American Journal of Community Psycholo (October, 1991) and three new texts (Katz & Bender, 1990; Powell, 1990; Romeder, 1990).  41  Terminology Groups of individuals coming together to provide support and to help each other with a common problem are classed as se]f-help groups. They are focused on the sharing of practical experience based knowledge (mutual aid) and develop processes based on the values on mutuality and reciprocity (Silverman, 1980). Viewed as peers, the only commonality between the members may be the problem or concern that they share. While “self-help group” is the more widely used term, the terms “mutual aid groups” and “mutual help groups” are used interchangeably in the literature and preferred by some researchers (Silverman, 1978; Maton, 1989). Borkman (1991) argues that although mutual aid is a major factor, emphasis on the value of personal responsibility in the form of action or “self-help” is sufficiently dominant to sustain use of the label self-help group. Another dominant characteristic is that self-help groups are member owned. Therefore, similar groups led by professionals or human service agencies are referred to as “support groups” by researchers (Borkman, 1991). Authors do speak of self-help groups and self-help organizations synonymously (Borkman, 1991) and for the purpose of this study no distinction will be made.  Definition of a Self-Help Group A formal definition developed by the U.S. Department of Health and Human Services (1987) is now used by many professionals. Self-help groups are:  42 concern and give Self-governing groups whose members share a common each other emotional support and material aid, charge either no fee or only a small fee for membership, and place high value on experiential knowledge in the belief that it provides special understanding of a situation. In addition to providing mutual support for their members, such groups may also be involved in information, education, material aid, and social advocacy in their communities (p. 5). ...  This definition is comprehensive, however, for the purpose of this study a simpler definition which captures the essence is selected. A self-help group is a human service-oriented voluntary association made up of persons who band together to resolve the problem through their mutual efforts (Borkman, 1976, p. 445).  Self-Help Group Characteristics Definitions do not include all the elements considered to be characteristic of self-help groups nor do they provide a complete basis for comparing these groups to other care giving systems. The following characteristics provide a framework for defining the unique qualities of a particular self-help group. They can also serve to differentiate self-help groups within the three caregiving systems of self help, professional and community (Powell, 1990).  Focal Problem There are only a few problems of significance for which self-help organizations do not exist. Indeed, the spectrum of human concerns is encompassed Two qualities that may be considered in defining the focal problem of a group are the degree of social network disruption and degree of related life stress Jaton, 1989). Either or both of these factors are evident in problems  43 addressed by self-help groups. Maton (1989) has studied the relation between the focal problem and the method of problem solving used by groups and claims there is a fit between the “helping ecology” and the focal problem.  Purpose The 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 self actualization. Katz and Bender (1976) proposed five classes of groups based on the following purposes: self-actualization, social advocacy, alterations in lifestyle, refuge for outcasts and unclassified.  Source of Help The most pivotal characteristic of all self-help groups is that as a source of help the members themselves are utilized; sharing effort, knowledge, skills and support (Levy, 1976). This kind of help is known as peer support or mutual aid and 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). The phenomenon of participants benefitting from helping others is referred to as “helper therapy” and is regarded as a strong basis for both the appeal and success of self-help groups (Riessman, 1965).  44 Within the professional care system, the role of the provider is explicit and is usually a remunerated position. This means the participant pays and is usually in a receptive position. In the community care giving system, the roles are informal and mutual (Powell, 1990). Professionals are at times involved with se]f help groups but they usually have a consulting or temporary role. Focus of concern is a term used to describe the reciprocity of helping in the self-help groups and distinguishes it from a focus on self only in the other two care giving systems (Powell, 1990).  Knowledge Base There appear to be two bases for receiving help from peers. One is the immediate understanding that comes from being “in the same boat.” Anxiety is relieved when members discover the commonalities of their experiences with the problem of concern. The other form of help is knowledge built upon the experiences of dealing with the problem or issue of concern. This knowledge has been labelled “experiential” because it has been developed through the experience of members. It identifies some of the members as “veterans” (Borkman, 1976, Silverman, 1980) or “mentors” (Powell, 1990), those who can demonstrate what is possible. Powell (1990) uses the experiential basis of the knowledge of self-help groups 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’s ideology as it is distinctive of the group and is based on the accumulated wisdom  45 of the people that have been dealing with the particular problem or concern (Antze, 1976; Back & Taylor, 1976; Maton, 1989; Suler, 1984). Suler states: “a self-help group is often founded on an ideology; a system of beliefs, attitudes, and values, that helps its members define their problem and how it should be alleviated” (1984, p. 30). Of note here is the fact that many self-help groups have emerged as a result of a desire to defend themselves against and to change a bad label or designation attributed to them by the larger culture (e.g., gay rights groups, handicapped groups). Boshier states that “ideology structures our perceptions in particular directions and often conceals or legitimates unequal power relations. Ideology is usually linked to a pattern of domination which privileges some groups over others” (in press). There is the likelihood, then, that the ideology of a self-help group wifi be counter to, or in some way at odds with the ideology of the dominant culture. Further, the degree to which this exists will likely indicate the amount of emphasis and effort placed by the group on social action. Also, in some groups the ideology is articulated to a greater degree than in others. Depending on the group the ideology may be quite rigid and limit some freedoms of members.  Basis of Power Experiential knowledge has been identified as a significant element in the success of se]f-help group members to help each other and in terms of power, it confers “referent” power to the provider. The professional care system has professional knowledge and “expert” power. Social power is attributed to the  46 informal helper in the community caregiver system on the basis of their social or “lay” knowledge (Powell, 1990).  Composition The groups are composed of members who have in common a problem or disturbing situation. In some cases, like relatives of alcoholics or parents of terminally ill children, the disturbing situation may be second hand. As well, some groups have sessions for both members and their support persons. Most groups have a mix of newcomers and veterans. The newcomers are essential to the maintenance of groups as members leave after a period of involvement or “help” and are considered inputs.  Inputs Systems require continual inputs to maintain themselves and are important because they influence the groups scope and complexity. There are a variety of ways that members of self-help groups contribute, usually by volunteering for jobs within the organization. This is called “payback” by Powell (1990) and is as essential an input to self-help groups as is financial aid. Mentoring by senior members (veterans) is one familiar mode of payback. Money is usually raised through charitable fund raising activities although some groups charge modest fees. In the professional system the inputs are formal, depending on fees for service; the community system inputs are “altruistic” (Powell, 1990, p. 43).  47 Origin and Sanction For the majority of self-help groups, the origin and sanction rests with the membership rather than with an agency or professional. Some groups (e.g., Make Today Count) are started by professionals but usually they leave once the group is self-sufficient. Self-help groups may share some characteristics of professional groups but they rarely possess “societal legitimation so characteristic of formal help-giving professions” (Lieberman, 1979, p. 118).  Control Self-help groups are controlled by their members and usually a democratic process prevails. Leadership is indigenous rather than external and egalitarian rather than structured (Katz, 1981). The old-timers or veterans become the leaders; those members “who have the problem and know a lot about it from the inside, from experiencing it” (Riessman, 1987, p. x). Professionals and agencies may be utilized for various functions but are often not involved in a central capacity. The nature of involvement of professionals with such groups and the attitude of professionals towards the groups has been of constant interest to researchers (Farquharson, 1990). This arises from acknowledgement that the growth of these “aprofessional” groups was in part driven by dissatisfied health care consumers who chose self-help over professional help (Vattano, 1972; Durman, 1976). There is also concern that policies supporting increased personal and group responsibility for health diminishes societal responsibility for solving  48 conditions directly related to health problems, such as unemployment and lack of adequate housing (Levy, 1976; Checkoway, Chesler and Blum, 1990). A recent work on classification of self-help groups utilized organizational theory to differentiate groups on the basis of the kind and locus of power and authority used in various facets of decision making and leadership (Schubert and Borkman, 1991). Five types of groups are described: unaffihiated, federated, affiliated, hybrid and managed. The above typology will be used by researchers to examine stages and life cycles of self-help groups.  Organization Design Organization design is used to describe the degree of formality of the organization, of which there is great variance between self-help groups. Self-help groups classed as formal would be those with an “explicit set of normative beliefs, guidelines for action, and actual procedures” (Powell, 1990, p. 37). Groups that have many franchises such as Alcoholics Anonymous and Recovery, Inc. are viewed this way. Most self-help groups are less formal than professional agencies but not as informal as community caregiving systems (Powell, 1990).  Other Characteristics Kilhilea (1976) identifies collective will power and belief as an important characteristic and stresses the importance of constructive action toward shared goals. Katz (1970) states that self-help groups share the qualities of small groups and concurs that action s directed by the goals of the group.  49 The process of characterizing and classifying self-help groups has been challenging, given the great number and diversity of them. However, the efforts to clarify the characteristics and provide typologies has assisted in providing bases for understanding them and in focusing empirical research.  Developmental Stages or Life Cycle Another approach to increasing knowledge of self-help organizations has been to study the changes that occur to them over time. The notion of a developmental process for self-help groups was first documented by Katz (1970). He delineated five stages as origin, informal organizational stage, emergence of leadership, beginning of formal organization and beginning of professionalism. The fact that many self-help organizations shun professional involvement has been a criticism of this model and Katz now concedes this (1981). In contrasting the dynamics of seff-help groups with professional therapy groups, the “aprofessional” dimension of self-help groups is considered to be an advantage (Gartner and Riessman, 1979). Back and Taylor (1976) proposed five stages of development as: agitation, formation of a group, development of morale, formation of a general ideology and movement to an expressive or political stage. Difficulty with this model is evident as a number of self-help groups choose to not become involved in social action. Borman (1979) suggests that groups can change, over time, on several fronts: size and structure of program, program focus, nature of membership and leadership, sources of funding and articulation with professionals and agencies.  50 This approach appears to be the most useful for providing a realistic picture of the growth of a self-help group.  Processes and Mechanisms As well as by their vast popularity, self-help groups have attracted the interest of researchers because of their seeming success in helping segments of the population that tended to not benefit from professional psychotherapy (Antze, 1976). Researchers were driven to discover the processes and mechanisms contributing to the efficacy of self-help groups. One of the earliest proposals regarding positive effects in self-help groups was identified by Riessman (1965) as the “helper-therapy principle.” The goal of helping others is a strong motivation within the groups and the notion of helping as being therapeutic in itself is supported by knowledge that helpers benefit by increases 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 a recipient 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 on groups such as that collected by Cartwnght and Zander (1968). These processes are underpinned by the psychological and educational orientations of behaviorism, cognitivism and humanism and of social learning theory. Behavioral processes identified are: direct and vicarious reinforcement, training, modelling and personal  51 goal setting. Processes of a humanistic orientation are empathy, self-disclosure and catharsis. Processes that fit a cognitive learning framework are: explanation, information and advice and problem solving (Levy, 1976). The most frequently used processes are empathy, positive reinforcement, self-disclosure, mutual affirmation, morale building, personal goal setting, catharsis and explanation (Levy, 1976). Impetus for research in this area came from the desire to provide guidance to leaders structuring and facilitating self-help groups. Other researchers Antze, 1976; Borkman, 1976) claimed that focus on these processes alone provided an incomplete picture of the helping potential of these groups. They argue that of equal importance is the body of knowledge about the problem of concern and of the ways the group has developed to solve or ameliorate the problem. Borkmans (1976) focus has been to identify the experiential nature of the knowledge base to distinguish self-help group “treatment” form that available from professionals or lay persons. Antze (1976) amves at a similar position 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 Ideolo Antze (1976) states that the common view of peer psychotherapy “neglects the very feature of these groups that their members take most seriously: the ideology of the group” (p. 324). In this context, the concept “ideology” is used to describe the specialized teachings based on the wisdom developed about the problem of concern to the group. Included, as well as the explicit beliefs, are the  52  rituals, rules of behaviour, slogans and “even favourite turns of phrase” (p. 324). Back and Taylor (1976) explain that people look for general principles based on success that can be considered a general ideology. Antze (1976) claims that the group is persuasive in promoting its ideology through the sharing of experience; that beyond the catharsis and validation of confessing there is a subtle form of indoctrination. He has supported his perspective with the theoretical work of Frank (1961) who argues that effective therapy achieves the goal of changing the client’s “assumptive world.” Antze (1976) claims that the effectiveness of self-help groups is both promoted and sustained by their unique ideologies. Lieberman (1979) has noted that one of the ways that self-help groups vary is in the degree to which their ideology is articulated. Demonstrating a similar perspective, Powell (1987), in his examination of reference group processes, views “personal change as both the cause and consequence of culture” (p. 72). Levy (1976) also gives support to this proposition. He identified as an important cognitive mechanism “the provision of an alternative or substitute culture and social structure within which members can develop new definitions of their personal identities and new norms upon which they can base their self-esteem” (1976, p. 320). Lieberman suggests that a common change mechanism in self-help groups is that of “perspective alteration in which small groups offer alternative belief systems about source, cause, and cure of the affliction or problem” (1979, p. 196). From the perspective of theoretical orientations to adult learning, studies on transformative or emancipatory learning  53 may provide explanation in this dimension. Similar to the concept of ideology and also proposed as a dynamic mechanism in self-help group processes, is the concept “experiential knowledge” (Borkrnan, 1976).  Experiential Knowledge The concept of “experiential knowledge” was developed and has been used almost exclusively by Borkman (1976, 1984 1990). She defines experiential knowledge as: “truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others” (1976, p. 446). It is information or know-how gained from personal participation and similar to Antze’s interest in ideology, Borkman believes it is the presence of this dynamic that creates a change process in self-help groups different than the processes in professional therapy. Experiential knowledge, however, is neither well understood nor legitimated by society and although it has previously been differentiated from professional knowledge, it needs also to be distinguished from lay or folk knowledge (Borkman, 1990). Three features specifically distinguish experiential knowledge from professional knowledge. Experiential knowledge is: “(1) pragmatic rather than scientific, (2) oriented to here-and-now action rather than to the long term development and systematic accumulation of knowledge, and (3) holistic and total rather than segmented” (Borkman, 1976, p. 449).  54 Personal participation in a phenomenon is emphasized as the basis of gaining experiential knowledge and is combined with an attitude of “what one experiences does indeed become knowledge” (Borkman, 1976, p. 447). These factors distinguish it from both professional and lay knowledge. Lay knowledge is often passed from one generation to another as in folk lore or is learned from media representation of scientific or professional knowledge. It is often equated with common sense or called “recipe” knowledge (Borkman, 1990). Professional knowledge is specialized and is both developed and transmitted by an established occupation. Professional knowledge usually requires credentials for use in practice. Within self-help groups there is a conviction of the validity and authority of experiential knowledge (Borkman, 1976, p. 447). The dynamic of “members reflecting 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 transformation in a member’s perspective as well as behaviour (p. 25). Lieberman (1979) suggests that one mechanism of cognitive restructuring is the exposure of members to the approaches to a common problem used by other members. Experiential knowledge is gained by involving the emotional sphere as well as the cognitive sphere in the learning. Borkman states that “feelings are a part of the language of the heart or a language of being that are similar among peers  55 who have talked with each other about their common predicament” (1990, P. 25). In contrast professional relationships are noted for the qualities of distance and objectivity. Borkman (1990) believes that the relationship of individuals to a problem or concern forms the basis for different perspectives or frames of reference. The experiential frame of reference is limited to those who have experienced a certain phenomenor and it is therefore, a different frame of reference than that used by professionals or lay persons. The need for recognition of the experiential frame of reference and of experiential knowledge as a distinctive component of self-help groups is clearly presented by Borkman (1976, 1990). Recently other researchers have acknowledged self-help groups on a similar basis (Checkoway, Chesler & Blum, 1990; Powell, 1990). Experiential knowledge and ideology are presented as two elements in the helping processes of self-help groups that can be linked to theoretical writings in adult learning. Since a major focus of this study is exploration of the phenomenon of adult learning within the seff-help group, experiential knowledge and ideology are used as the signposts for references in the literature on adult learning. The other notable elements of learning in self-help groups are learning with peers and the notion of transformation.  Research Problems and Directions for the Future Two problems in doing research with self-help groups are consistently mentioned in the literature. Study of these groups has always been hampered by  56 the problem of their “exclusive” nature and restricted membership. Also, it is difficult to study outcomes in a comparative way because of the great diversity in the groups and the fact that the participants are immediately differentiated from the general population by their act of joining the group. The need for more research is revealed frequently in the literature reviewed. Durman (1976) states that if self-help is seen as a direct substitute for professional therapy then evaluation of outcomes is crucial and criteria for assessment are needed. Lieberman and Bond (1978) concur with the need for assessment and state that there are conceptual problems because many groups have different objectives and researchers must work from the perspective of the groups. Killilea signalled the need for historical studies and “multifactorial analysis 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 of analytical techniques and use of theoretical frames from other disciplines. Use of organizational theory to develop a new typology of self-help groups is evidence of this (Schubert and Borkman, 1991).  Summary of Literature on Self-Help Groups The literature on self-help groups is extensive, varied and illuminating. Characteristics of self-help groups have been delineated in ways that provide frameworks for their study (Borman, 1979; Levy, 1976; Maton, 1989; Powell, 1990). The characteristics identified provide a framework for the description of  57 HOPE as a self-help group in the context of other self-help groups and care giving systems. 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-help groups have been identified from the perspective of psychology (Levy, 1976; Maton, 1989; Powell, 1987). Learning from peers is the perspective taken for this study. References on change processes in the literature on seff-help groups that are of particular interest are “experiential knowledge” and “group ideology” as both these concepts also appear in literature on adult learning. Often in studies of self-help groups the general term “transformation” is used to describe the personal changes that happen to group members (e.g., Borkman, 1984). The theme of transformation is well developed in the literature on adult learning as it forms the basis for a body of theoretical work on transformative learning (Taylor, 1989, Mezirow, 1978, 1981, 1991; Mezirow & Associates, 1990). Literature on adult learning which relates to these elements is reviewed in the next section of this chap ter.  Literature on Adult Learning This section of the chapter is a review of selected literature on adult learning. It was intended that understanding of the phenomenon of adults learning in the context of a self-help group would be enhanced by describing and comparing the theoretical assumptions presented in the literature on self-help  58 groups with theoretical works on adult learning. The literature reviewed in this section was selected for its potential to focus, analyze and interpret the data collected on the learning experiences of members of HOPE. The features of HOPE that appeared to be similar to those found in other self-help groups and to connect with various studies on adult learning were: development of experiential knowledge of a shared problem or concern, a group ideology different from that of the dominant culture, the experience of learning with 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 on adult learning were meant to be heuristic in nature. They were used to guide the exploration by directing questions and observations for the data collection. This section begins with a brief overview of the literature on adult learning.  Overview of Literature on Adult Learning The literature that deals either directly or indirectly with adult learning is both extensive and diverse. Merriam, (1987, 1988b) and Merriam and Cafferella (1991), have attempted to describe, organize and evaluate much of that literature according to its ability to distinguish adult learning as different from child learning and the degree of explanatory power it offers. In a summary article by Merriam (1988a), six main categories of literature are defined. Three sections are composed of general literature that is widely used by adult educators. Ordered from low to high in their degree of explanatory  59 power, they are: definitions and types of learning, concepts related to learning ability, and general learning theories. The general learning theories define learning from the perspective of well known psychological schools (e.g., behaviorism, cognitivism, humanism) and have been very influential in the formation of adult education programs. Program facilitators often draw on aspects of one or more traditions but the personality or culture of an adult education organization can usually be linked to the dominant values or philosophies of one of these theoretical schools (Cafferella & O’Donnell, 1987). There are also three sections of literature that distinguish adult learning as a unique phenomenon. Considered to have the lowest explanatory power but well investigated are characteristics of adult learners such as: motivation, participation and adult development. Considered more useful in terms of explanation are the concepts that have come to be identified with adult learning such as: self-direction, experience, pragmatism, voluntarism and praxis. The literature reviewed in the last category is labelled “theories of adult learning” and provides the most explanatory 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 completely qualify for the status of “theory” based on the criteria of practical application, understanding and universality developed by Rachel (1986, cited in Merriam  60 (1988b). It is notable that these criteria fit well with the positivistic paradigm which utilizes scientific methodology to generate principles. Therefore, her work suffers from criticism for its lack of consideration of important phenomenological studies on learning (e.g., Marton, Hounsell & Entwistle (Eds. 1984)). By examining both the content and process of learning as a unified whole, Marton and Saijo (1984) determined different approaches to learning which they have named “deep” and “surface.”  This study and others focusing on natural learning  situations have created new perspectives on adult learning and study in the field. Also absent from the study by Merriam (1988b) are references to extensive writings on experiential learning (e.g., Keeton and Tate, 1978; KoIb, 1984). Clearly, there exists a body of literature relating to adult learning that is diverse and extensive. The next sections of this chapter will focus specifically on literature selected on the basis of a relation to the elements identified as significant in the literature on self-help groups. The initial selection of writings was organized under the headings of: experiential knowledge, situated learning which includes the concepts legitimate peripheral participation and zone of proximal development, and transformative learning.  Experiential Knowledge In spite of the abundance of literature on experiential learning (e.g., Keeton & Tate, 1978; Kolb, 1984, Torbert, 1972) the concept, “experiential knowledge” was difficult to locate. Burnard (1988) includes it in his proposal of a “theory of  61 knowledge” as a basis for experiential learning. Using work of Heron (1981), he distinguishes three kinds of knowledge: propositional, practical and experiential. Propositional knowledge is knowledge of facts or truths such as is stated in propositions 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 of what is known about subjects, persons and things. Practical knowledge is “knowing ‘how to do’ as exemplified in the exercise of some special skill or proficiency” (Heron, 1981, p. 158). These domains of knowledge can overlap or be quite independent. For example, one can know how a car engine works but not have the skills to fix it or vice a versa (Heron, 1981). Experiential knowledge is defined by Burnard as that “gained by direct encounter with a subject, person, or thing” (1988, p. 128). Within the domain of experiential knowledge, both the subjective and affective nature of the encounter contribute to knowledge and therefore it is personal, idiosyncratic and difficult to put into words (Burnard, 1988). Burnard (1988) claims that once experiential knowledge is well articulated it 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 propositional knowledge may assist in understanding the developmental process of members from newcomer to veteran. Borkman (1976) claims that in self-help groups, power and leadership is attributed on the basis of expertise with experiential knowledge related to solving the problems of concern. This is likely to be “practical” knowledge and  62 consideration must be given to the possibility that experiential knowledge can become practical knowledge. Some acknowledgement of this possibility is indirectly provided by Dewey (1933, cited by Boud, Keough and Walker, 1985) who stated that there are two kinds of experiential learning processes: a trial and error process that results in “rule of thumb” decisions and a reflective process which involves connecting the parts of an experience and perceiving the relationships.  Experiential Learning There 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 include two large sets. One set focuses on theoretical considerations and defines learning processes that emphasize experience as an integral aspect (e.g., Jarvis, 1987b; Koib, 1984). The other set refers essentially to “planned” experience-based learning (e.g., Keeton & Tate, 1978). Much of this literature is aimed at enhancing planned learning and experience is often simulated and is referred to as simulation, role-playing, and games (Keeton & Tate, 1978). These writings provide direction for practice and debate policy concerns related to credentials, etc. All the writings focus on experience as an essential aspect of learning and promote learner involvement in processing the experience to the extent that learning is personalized.  63 The essence of experiential learning is learning through “firsthand, fullbodied realities” (KoIb & Lewis, 1986). Keeton and Tate define experiential learning as: “learning in which the learner is directly in touch with the realities being 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 contact with them as part of the learning process” (1978, p. 2). Boud, Walker and Keough contrast experiential learning with “classroom learning which concerns symbolic or information assimilation” and state experience “consists of the total response of a person to a situation or event: what he or she thinks, feels, does and concludes at the time and immediately thereafter” (1985, p. 18). These definitions are consistent with Borkman who states that experiential knowledge is: “truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others” (1976, p. 446).  Processes of Experiential Learning Koib’s model of experiential learning (Kolb, 1984) has frequently been used as 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 in action research and laboratory training, the model illustrates four stages in the experiential learning process: concrete experience, observations and reflections, formation of abstract concepts and generalizations, and testing implications of concepts in new situations (Koib & Fry, 1975). Kolb has developed this basic  64 model into a major work titled Experiential Learning: Experience as the Source of Learning and Development (1984). It is well detailed and therefore difficult to summarize. The four major steps are illustrated in Figure 1.  Figure 1: The Experiential Learning Model  Concrete  Tedng Implications of Concepts in New Situations  (R0)  Observations and  (AC) Fo adon of Abstract Concepts and Gnerallzadons  Source: Kolb, 1984, p. 21.  More relevant to this study than the details of the steps of the model is the emphasis placed on reflection in the learning process and explicit consideration of the affective dimensions of experiential learning (Boud, Keough & Walker, 1985). Reflection is described by Boud, Keough and Walker as a generic term and is defined as “those intellectual and affective activities in which individuals engage to explore their experiences in order to lead to new understandings and appreciations” (1985, p. 19). The fact that only the learners themselves can reflect  65 and personalize learning is emphasized. It is important activity because it is “the working with experience” in the sense of mulling it over and evaluating it, that is essential 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 define it as the “process of creating and clarifying the meaning of experience (present or past) 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 of experience-based learning and that “without it, experiences may remain as experiences and the full potential for learning by the participant may not be realized” (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, Keough and Walker, by naming it as an element of reflection which is delineated as “returning to the experience, attending to feelings, and re-evaluating the experience” (1985, p. 21). The importance of both reflecting on experience and attending to feelings as an element in the process were considered in the data collection process for this study.  66 Situated Learning: Legitimate Peripheral Participation One of the central aspects of participation in a self-help group is learning from peers and the resulting phenomenon of growth of the participants, specifically, movement from novice to veteran. Several references to this shift were found in the literature on self-help groups but learning from peers is not well developed in literature on adult learning. There is one notable exception. The work of Lave and Wenger (1991) relates to this almost in its entirety. In their early work they attempted to clarify and make useful prior studies on apprenticeship. This led to their presentation of a social practice theory of learning (situated learning) which hinges on their development of the concept of legitimate peripheral participation. This concept “provides a way to speak about the relations between newcomers and oldtimers, and about activities, artifacts and communities of practice” and “the process by which newcomers become part of a community of practice” (p. 29). The conceptual work of Lave and Wenger is explored further because of its potential value in interpreting the observations made and narratives obtained from the participants situated at HOPE Cancer Health Centre.  Background of “Situated Learning” Development of the concept of “situated learning” was important early work for Lave and Wenger. Struggle with both narrow and broad meanings of “situated learning” led Lave and Wenger to a conceptualization emphasizing the integral relationship between learning and the activity in the social situation and the view  67 that “agent, activity and the world are mutually constituted” (1991, P. 33). This concept became the basis for claims of the relational character of learning and knowledge and of the “concerned (engaged, dilemma driven) nature of learning activity for the people involved” (p. 33). However, they had difficulty in distinguishing it from “learning in situ” and “learning by doing” although they had come to an understanding of situated learning as being much more encompassing. This prompted further exploration and they formulated the concept of legitimate peripheral participation as being more expressive of their central premise that learning is “an integral and inseparable aspect of social practice” (p. 31).  Legitimate Peripheral Participation The concept of legitimate peripheral participation is central to the work of Lave and Wenger. It is “proposed as a descriptor of engagement in social practice that entails learning as an integral constituent” (1991, p. 35). It is the linking together of the three words that provides power to the concept; “its constituents contribute inseparable aspects whose combinations create a landscape--shapes, degree, textures--of community membership” (p. 35). No part alone conveys the same meaning and there are not meant to be opposing concepts such as illegitimate peripheral participation. Peripherality is meant to suggest the varied and multiple ways of engaging or being located as a participant and when legitimacy is connected to peripheral participation, a demand is created to attend also, to issues of social organization and control of resources.  68 Lave and Wenger (1991) caution that legitimate peripheral participation is an analytical way of understanding learning rather than a teaching technique or educational strategy. The concept is meant to have high potential as an analytical tool because any analysis would be multilayered and refer both to the development of knowledgeably skilled identities in communities of practice and to the development and reproduction of these same communities. It would also have to address how social and political influences impact communities of social practice over time.  Learning In the view of Lave and Wenger (1991), the analytical focus is shifted from the learner as an individual to learning as participation in the social world and away from the notion of learning as strictly a cognitive process to one that encompasses social practice: “as person-in-the-world, as member of a sociocultural community” (p. 52). Their theory of social practice emphasizes “the relational interdependency of agent and world, activity, meaning, cognition, learning, and knowing” (p. 50). Learning implies personal changes as a result of the potentials enabled by the interactions in these systems. Meaning is socially negotiated in the social and cultural world which both acts upon and is changed by the activities of individuals. In their words “in a theory of practice, cognition and communication in, and with, the social world are situated in the historical development of ongoing activity” (p. 51).  69 The text by Lave and Wenger (1991) has five illustrative cases and in each example, learning is a more prominent phenomenon than teaching and it is noted that the curriculum evolves out of the common practice of the community. Access as legitimate peripheral participants allows learners to “develop a view of what the whole enterprise is about and what there is to be learned” (p. 93). The outcome of legitimate peripheral participation is that both learners and the community of practice change. While newcomers change with the acquisition of knowledgeable skills, the community changes through the activity and participation of the individuals involved. Individual learning is important for the maintenance of social practice and the opportunity to learn is essential to sociocultural transformation (Lave & Wenger, 1991). A concept used by Lave and Wenger (1991) and referred to in other academic writings on adult learning (e.g., Kolb, 1984; Taylor, 1989), is “zone of proximal development.” As it clearly refers to learning with peers, it is considered further.  Zone of Proximal Development The concept “zone of proximal development” was developed by the Russian psychologist Vygotsky (1978). His work, based on the development of higher psychological processes, was centered on studies of child development but includes concepts which can be applied to adult learning.  Evidence of this is the frequency  with which this concept is cited by adult learning theorists (e.g., Kolb, 1984; Lave & Wenger, 1991; Taylor, 1989).  70 For Vygotsky, individual development is rooted in society and in culture and is a result of the interweaving of elementary psychological processes which originate in the biological being, and higher functions which are of social cultural origin. Basic to learning are the development of language and symbols, for they are necessary for combining in the mind elements of the past and present and for representing future actions. Also critical to the learning process is interaction with more capable others. The zone of proximal development is defined as: “the distance between the actual developmental level as determined by independent problem solving and the level of potential development as determined through problem solving under adult guidance or in collaboration with more capable peers” (Vygotsky, 1978, p. 86). Individuals differ in their readiness to learn and this needs to be acknowledged in learning situations. When individuals are in the company of teachers, presented with learnings that are in their “zone,” then learning is most likely to happen. This implies careful planning of learning experiences. Also, access to appropriate learning experiences is necessary. It is this latter aspect that Lave and Wenger (1991) emphasize but this concept is pertinent to this study also because it acknowledges the phenomenon of learning from more experienced peers.  Transformative Learning The 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. The process “involves a sequence of learning activities that begins with a disorienting  71 dilemma and concludes with a changed self-concept that enables a reintegration into 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 process are at best a “disorienting dilemma” and it was anticipated that at least for some members, learning is of a transformative nature. This provides one link to this set of literature. Another reason this literature appeared to be relevant and useful is that Antze (1976) identified the adoption of a group’s ideology or set of beliefs by its members as the central mechanism by which self-help groups help the members achieve their goals (Antze, 1976). A self-help group’s ideology is usually somewhat at odds with the dominant perceptions of the focal problem of a group or defines the problem in a way that better integrates the experience. Therefore, it was believed the concepts discussed in the models of transformative learning could help explain this process. The growing body of theoretical work on transformative learning (IViezirow, 1978, 1991; Mezirow & Associates, 1990; Taylor, 1989) was sparked by Mezirow’s introduction 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 educators was very different; Mezirow began his theoretical development with a study of a women’s work re-entry program and Freire worked in “circles of culture” with  72 peasants in Brazil. Similarity in their work has however, prompted studies of comparison and synthesis (e.g., Carrol, 1987 Taylor, 1989). Both Mezirow and Freire describe a developmental or evolutionary process which involves acknowledgement of the “cultural assumptions governing the rules, roles, conventions and social expectations which dictate the way we see, think, feel and act” (Mezirow, 1981, p. 11). This recognition may result from an individual awareness of the ineffectiveness of ones current perspective in dealing with certain problems or from a sudden insight, or may be the result of a “conscientization” process whereby groups are assisted to become more aware of “both the sociocultural reality which shapes their lives and of their capacity to transform that reality” (Freire, 1970, p. 27). Also both theorists emphasize as integral, the place of critical reflection and critical dialogue in the process of reframing or transforming meaning perspectives. Of note is the fact that work on moral and intellectual development (e.g., Kitchener and King, 1990) supports the notion that critical reflection and critical dialogue are attributes of adults thereby distinguishing transformative learning as adult learning theory.  Emancipatorv Education Freire’s work has been described as a model of education which focuses on both 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 emancipatory education as: “an organized effort to precipitate or to facilitate transformative  73 learning in others” (1990, P. xv). While this definition links the concept of transformative learning with emancipatory education, it leaves out the important components of “problem posing” and social change which are integral to Freire’s work and are what the concept emancipatory education is more commonly associated with. The model has caught the attention of health workers seeking to help individuals and groups problem solve around the issues that impact their health status. In these cases the goal of action resulting in social change is evident.  It  has already been discussed that some self-help groups evolve into “social action” groups, providing one commonality. Perhaps more pertinent to this study is one of the principles that is stressed in the process: “the imperative nature of the total participation of the people themselves in a process based upon dialoguing between equals” (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 Learning The term “transformative learning” appears to have evolved as a concept that is close to that of “perspective transformation” but by being more general, can accommodate the work of Mezirow and of other theorists as well. Mezirow and his associates define transformative learning as: “the process of learning through critical self-reflection, which results in the reformulation of a meaning perspective to allow a more inclusive, discriminating, and integrative understanding of one’s experience. Learning includes acting on these insights” (Mezirow & Associates,  74 1990, P. xv). Perspective transformation has been defined as: the emancipatory process of becoming critically aware of how and why the structure of psycho-cultural assumptions has come to constrain the way we see ourselves and our relationships, reconstituting this structure to permit a more inclusive and discriminating integration of experience and acting upon these new understandings. It is the learning process by which adults come to recognize their culturally induced dependency roles and relationships and the reasons for them and take action to overcome them (1981, p. 6-7). Basic to this process of transformation is the concept of “meaning perspective” and what it stands for. Meaning perspective is defined as “the structure of assumptions that constitutes a frame of reference for interpreting the meaning of an experience” (Mezirow & Associates, 1990, p. xv). This concept is very close in meaning to that of “personal construct” (Kelly, 1955), “paradigm” (Kuhn, 1962), and “world view” (Osborne, 1985). Related definitions of learning are expressed as a change in world view, a paradigm change and modification of personal constructs. Although the elements are similar, one of the ways the definitions vary is in emphasis on the involvement of the different human domains in the learning process. Mezirow is clear in his discussion of perspective transformation that cognitive, affective and conative dimensions are all involved (1990, p. 12) and exploration of the social-cultural base of meaning perspectives is provided in his later work (1991). The importance of this concept in the learning process comes from the operative use of meaning perspectives in the everyday lives of adults. These sets of assumptions, or meaning perspectives, structure the way we interpret our experiences, and in the sense that they frame our perceptions they create “habits of expectation” (Mezirow, 1990, p. 1). These habits of expectation evolve from a  75 biographically based stock of knowledge and are generally useful in everyday experiences. They allow individuals to respond to their environment and perform activities more or less routinely (Jarvis, 1987b). It is when there is a discontinuity between peopl&s habits of expectation and their experiences in the socio-cultural temporal world that the opportunity for transformative learning occurs. The goal of transformative learning is to take into account how these habits of expectation influence our meaning making. The theoretical work on transformational learning has utilized the writings of other theorists, for example: Kelly, Nichol, Bruner, and Habermas. Detailed examination of the work of these authors would be both interesting and illuminating but is beyond the scope of this study. Instead, to provide an overview of transformation learning, a model of transformative learning is introduced.  Model of Transformative Learning Synthesizing the works of several theorists and a dynamic personal “case” of transformative learning, Taylor (1989) has constructed a “model of transformative learning.” She states that while the model could present a static picture of a process 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 way to develop understanding of transformative learning and the possible relevance of some of the concepts to adults learning within the context of a self-help group. Taylor introduces transformational learning as a “cyclical process of change or transformation in consciousness which takes place in three phases- -generation,  76 transformation, and integration” (1989, p. 196). These phases are not unlike the steps that Mezirow first outlined: alienation, reframing, and contractual solidarity (1978, p. 105). In Taylors’s model each of the three phases is comprised of two steps, resulting in six steps in a continuum (Figure 1). A brief summary of each step follows.  experience  nS  fless  ØON  VI. GROUNDING AND DEVELOPMENT Nurturing the growth of the new reality through: —trying out new vision in own lire-space —letting go of old patterns —accepting and acting on new patterns —Interweaving old and new patterns  V. PERSONAL_COMMITMENT Making decision to proceed with integration (act of intention, purpose, will)  Source: Taylor, 1989, p. 217.  Figure 2: Model of transformative learning.  I. ENCOUNTERING TRIGGER EVENT(S) Reality de,nan,js attention (anoma I i es, contradict I ons. disorlentj,ig di lemmas) I. elcteir,aI (social) events 2. internal (psychological) events  “consciousness-creating” self—induced and self—propelled  2. other—Induced and facilitated (i.e., by educator or therapist)  3.  Involved in “making a reality” “worid—maki iig”  engagement with  II. CONFRONTING REAI,ITY Period of Intense, concentrated  III. REACHING THE TRANSITION_POINT 3. make decision to leap or shift 2. leap or shift “Just happens”  IV. LEAP OR SHIFT OF TRANSCENDENCE Shift grounds of reality, or leap to new reality or perspective through: 1. sudden insight 2. gradual revelation  78 Phase one: Generation of consciousness Step one of this phase is called “encountering trigger events” and is a preparatory period where there is some demand for attention to life events. Examples of trigger events are: life shattering events involving major upheaval such as war, rapid social change or environmental disaster; or upheaval at a more personal level such as divorce, death or a serious illness; or a disorientation in meaning systems resulting from personal introspection (Taylor, 1989, p. 196). The notion of trigger events is consistent with other learning theories, for example, Jarvis speaks of “disjunction between individuals own biographies and the socio cultural-temporal world of their experience” creating the potential for a learning experience (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 is a heightened concentration and focus of the learners’ energies on the issues provoked by the trigger events” (p. 198). Although this step may be entered by the learner alone, others including educators, may become involved in facffitating this step. Integral to this step, are reflection, dialogue and the “fusion of reflection and action” (Taylor, 1989, p. 199). The importance of critical reflection and critical self-reflection is flagged by the publication of a text devoted to fostering critical reflection in adulthood (Mezirow & Associates, 1990). Mezirow (1981) previously delineated seven levels of reflectivity, with the last three involving critical consciousness. A recent text provides the following definitions:  79 Reflection: Examination of the justification for ones’s beliefs, primarily to guide action and to reassess the efficacy of the strategies and procedures used in problem solving. Critical reflection: Assessment of the validity of the presuppositions of one’s meaning perspectives, and examination of their sources and consequences. Critical self-reflection: Assessment of the way one has posed problems and of one’s own meaning perspectives (Mezirow & Associates, 1990, p. xvi). For this study, however, the specificity of these concepts is not so important as is an emphasis on reflection as a key element in the process of transformative learning. The results of critical reflection are intended to create “alternative possible new realities” (Taylor, 1989, P. 199). This process is considered to be a personal process, in that it takes place within the mind of the individual. Communication and language skills are basic to learning processes and are especially emphasized by theorists using social models of learning (e.g., Vygotsky, 1978). Critical reflection and critical self-reflection are enhanced by dialogue with others through the sharing and generating of meaning. Mezirow emphasizes the importance of critical dialogue because “in communicative learning there are no empirical 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 like information 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 of reflection with action. Fusion is characterized by the integration of all elements of experience: thought, feeling and action, and is necessary throughout the transformative learning cycle (Taylor, 1989, p. 220).  80 Phase two: Transformation of consciousness The two steps identified in this phase are “reaching the transition point” and “&‘shift or leap of transcendence” (Taylor, 1989, p. 202). The first step is described as the point of transition between the confronting of reality and the shift. 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 an awareness that a new perspective has developed in the consciousness. It is this step that is variously described as “conscientization,” the “development of possible worlds” and a “transformation of perspective.” In this step, the affective quality of experience is often dominant as individuals become aware of the transcendence (Taylor, 1989).  Phase three: Integration of consciousness Taylor states the new knowledge, consciousness or vision must be “nurtured, grounded, implemented, extended, and developed or integrated into the life pattern of the individual” (1989, p. 204). It happens over time and requires the steps of “personal commitment” and “grounding and development.” The challenge of turning the new vision into reality requires commitment and the energy of this commitment is needed in the final step which involves both letting go and exploring options. At this time, the fusion of reflection and action are again involved but the emphasis is on action. “Praxis” is a dominant concept in Freire’s work. To him, it meant “the action and reflection of men upon their world  81 in order to transform it” (1970, P. 66). Praxis is central to his work as the goal of emancipation education is essential social change. Although explicit references to peer groups are not found in this set of literature, there are references to both social support and reference groups. Mezirow states: Moving to a new perspective and sustaining the actions which it requires is dependent 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 have their support and reinforcement to enable you to take action the new viewpoint reveals is in your interest” (1978, p. 105). Knowledge of the contributions of membership in a reference group in the process of transformative learning can be utilized to better understand the dynamics of learning in a self-help group. The other links between self-help groups and transformative learning are the various elements of the process that appear similar to the experiences of members of HOPE. The elements are a disorienting dilemma, a search for new meaning and opportunity for exploration of old and new meaning perspectives. Themes from the other sections in the literature on adult learning were: the development of experiential knowledge, the transition of participants from newcomer to veteran status, readiness to learn from experienced peers and access to learning experiences. All these elements have been explored as theoretical presuppositions to focus and organize the observations and narrative explorations with the participants of HOPE.  82  CHAPTER FOUR RESEARCH DESIGN AND METHODOLOGY  The qualitative approach to research was chosen for this case study. This chapter discusses the methodology, why the method was chosen and how it was applied in selection of the research site, selection of the participants and design of the data collection and analysis.  Selection of the Research Method Research methods are born out of certain assumptions belonging to the major philosophies or traditions. Quantitative research is grounded in the empirical-rational paradigm. Qualitative research is consistent with the naturalistic 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 socially constructed by individual and collective definitions of experiences (McMillan & Schumacher, 1989). Understanding of specific social phenomenon is best achieved by discovering the perspective of the participants in the situation (Merriam, 1988a) The phenomena under investigation in this study are HOPE Cancer Health Centre and the learning experiences of members of HOPE.  As a self-help group it  has certain qualities and characteristics that can be described objectively. However, as a context for learning, some of its characteristics, such as its ideology,  83 can be determined only from the perspective of the members. Meaning of the ideology is personally and socially constructed by the members in the context of HOPE. 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 lived experiences with cancer and cancer care. Therefore, the phenomena of interest, which are HOPE itself and the learning experiences of the members viewed as multiple realities, are best studied within the naturalistic paradigm using the qualitative approach.  Research Design The design of the research is case study. In order to provide full, rich understanding of a phenomenon, one “unit of analysis” related to the research focus 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. The first perspective is HOPE as an organization in the larger context of other selfhelp groups and care giving systems. The second perspective is the inner workings of this group. In this perspective, the self-help group is the context of the learning experiences for the members of HOPE and the focus is on adult learning. One of the strengths of qualitative research is its discovery approach. However, the subjective nature of the data leads some to question the validity of the findings. External validity can be enhanced through “making explicit the conceptual framework which informs the study and from which findings can be  84 integrated or contrasted” (McMillan and Schumacher, 1989, P. 189). A framework of self-help group characteristics was developed from the literature on self-help groups to focus the collection of data for the description of the HOPE Cancer Health Centre. In order to focus the data collection on the learning experiences of members of HOPE, writings on adult learning were searched for concepts and propositions with explanatory potential. This search was directed by themes on individual and group change found in the literature on se]f-help groups and literature on adult learning. The theoretical concepts acted as heuristic devices in the early stages of the research and were used later to help analyze, organize and interpret the data. Another method of increasing adequacy in qualitative research is use of a variety of data collection methods. Participant observation of activities and review of written and videotaped materials complemented the planned interviews. The data collection methods will be discussed in a following section.  Identification of Site Selection of a self-help group as a research focus was directly related to my own participation in the HOPE Cancer Health Centre. I was both professionally and personally interested in learning more about HOPE as a self-help group and making a description of HOPE available to others. As a health care practit ioner I have been interested in personal lifestyle changes and health promotion activities for some time and believed that exploring the learning experiences of members of  85 HOPE who were considered to be successful learners, would be illuminating to myself 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 out other cancer patients interested in “helping each other.” Gartner and Riessman state that “both self-care and mutual aid activities are movements away from ‘mediocentrism’ (health care that is medically centered) and emphasize the power individuals have for their own well-being” (1979, p. 91). This self-help group for cancer patients and their support persons emphasizes self-care and healing. The word “HOPE” is significant for members because of both its literal meaning and as an acronym for: “helping ourselves psychologically everyday.” Both formal and informal learning and support activities are provided by HOPE and all activities are facilitated or organized by the veterans currently assuming leadership. As the unit of study, HOPE did not just provide “subjects” for the research; it provides the context for the learning experiences of the members. HOPE was studied both as a group within the larger context of care giving systems and as an organization providing learning opportunities for the participants.  Characteristics of Participants The membership of HOPE is composed of both cancer patients and their support persons. There were two sets of participants in the study: those interviewed and those who attended the workshops which I attended.  86 The fourteen members interviewed were purposefully chosen for their reputation as learners and their willingness to discuss their experiences as a member of HOPE and what their participation meant to them. One of the members interviewed was a support person. Her husband died of cancer two years ago, which was about nine months after they joined HOPE. The other thirteen members interviewed have had a diagnosis of cancer, twelve are currently in remission. The group of cancer patients interviewed was composed of the Director of HOPE, the two other paid staff members and ten regular members. Since there are many different malignant diseases or cancers, it is not surprising 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 experienced from the disease and the treatments. One participant had been classed as “terminal” at the Cancer Agency and some others had cancers considered to be very 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 and activities of HOPE. The age range in the group of members interviewed was 37 to 73 years. Two on the interviewees were men. The interview participants have all belonged to HOPE for more than two years. A total of 26 individuals participated in the two introductory workshops I attended as a participant-observer. Thirteen of the participants at the workshops were cancer patients. Two of them were men. In one workshop the range of age of the cancer patients was 39 to 67 years. The time from their original diagnosis  87 ranged from 2 to 28 months. In the other workshop, the age range of the cancer patients was 37 to 68 years and the time since their diagnosis ranged from 3 to 36 months. One of the support persons in that workshop had been treated for breast cancer twelve years ago and is well. None of the participants were interviewed but several completed a post-workshop survey. All the participants were viewed as a set of unique cancer patients and support persons. On the basis of their decision to become members of a self-help group (HOPE) they may have characteristics that are different from the general population.  Participant Selection It is common in case study design, when the purpose is to explore a phenomenon in depth, to purposefully select the participants for the contribution they can make to the study. “Reputational-cases” are one kind of a “purposeful sample” according to McMillan and Schumacher (1989, p. 397). Therefore, for the interviews, members that were reputed by others to be learners or that volunteered because of their interest in HOPE were chosen as “participants.” The leaders of HOPE were consulted in the selection process. In activities where I assumed a role of participant observer, the participants were considered to be self selected through their attendance at the event.  88  Methods of Data Collection Techniques used for the collection of data were those common to qualitative research: participant observation at the site, in-depth interviews with selected members of the group, and review of documents and media material. Use of this variety of methods helped achieve a holistic view of HOPE, a view which acknowledged the differences in the learning experiences of the members of HOPE and also acknowledged some similarities as a result of the contextual qualiti es of HOPE. Learning experiences of the members are embedded in the context of HOPE, and HOPE is embedded in a larger system of providers of care for cancer patients. Each data collection method is discussed in more detaiL  Review of Documents and Media Materials Articles, newsletters and media material such as videos and pamphlets were reviewed to discover the foundation of HOPE and its evolution over time. This material also provided some data on the purpose, the ideolo gy and the activities that are carried out. Personal testimonials of members were found in HOPE newsletters and magazine articles. The book My God, I Thoug ht You’d Died, co-authored by Claude Dosdall (Dosdall & Broatch, 1986), was read.  In-Depth Interview with the Remaining Founder Moyra White, the remaining co-founder and current director of HOPE Cancer Health Centre, was interviewed for data on the evolution and  89 characteristics of the organization and a perspective on becoming a leader of the group.  In-Depth Interviews with Current Staff The other two paid staff members were interviewed for their perspective on the operation of the organization and more specifically for their perspective of the purpose and the activities that are planned to achieve the purpose, facilitate learning and maintain the organization. They were also asked to provide their perspective on becoming involved as leaders at HOPE (see Interview Guide (Veterans), Appendix A).  In-Depth Interviews with Selected Learners Eleven in-depth interviews with the participants purposefully selected for their interest in this topic and their reputation as active participants in HOPE were carried out. This group included ten cancer patients and one support person. Semi-structured, open-ended questions were developed to guide the interviews (see Interview Guide (Learners), Appendix A). All interviews were audiotaped and transcribed for analysis. One audiotape did not transcribe well and most of that material was not useable.  Participant Observation I assumed the role of “participant observer” at two weekend workshops and at the office of HOPE on several different days. Because of the breadth of this  90 case 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 from research literature regarding the usefulness of conceptual frameworks in qualitative research. It is suggested that theoretical concepts be identified early in the research so that “salient” observations could be made (McMfflan & Schumacher, 1989). Concepts used to characterize self-help groups, such as knowledge base and composition, were located in the literature on self-help groups and developed into a framework which focused the collection of descriptive data about HOPE as a self-help group. Theoretical writings on experiential knowledge, transfo rmative learning and situated learning were chosen from the literature on adult learning as the lenses for observations and discussion related to the phenomenon of adult learning in this context. Field notes were made during and follow ing the workshops.  Survey Workshop participants who chose to completed a survey aimed at determining their expectations and satisfaction in relation to the workshop (see Workshop Participant Survey and Consent Form (Workshop Partici pant) and (Support Person), Appendix A).  91 My Own Experience My own experiences as a member of this group and my knowledge of the activities and inner workings were treated as valid data. This was most useful for the design of the data collection tools and selection of the literature review. Data from the other sources was used for the description of HOPE and the learning experiences of the members of HOPE. The role of the researcher in the qualitative approach to research is not one of “objective” observer. The researcher is interactive in the research process and is as 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 a limitation in this study. Owens (1982) claims that in qualitative research validity is 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 is believed that my sharing of the experience of cancer and my longstanding membership in this organization enhanced the dialogues with other members. During the data collection process I made a conscious effort to be open to discovering the realities that were presented and to minimize the influence of my own experiences.  Ethical Considerations Initially, permission was granted by HOPE staff for me to attend two weekend workshops and to interview some members. All of the members of  92 HOPE that were approached to participate were offered an explicit choice regarding their participation in the study and they were assured that non participation would in no way jeopardize their membership. The interview participants were given an option to remain anonymous or be identified with their own name. This option was based on the following assumptions. In an interview situation, relative control over the structuring of meaning rests with the interviewer. One way for members of a culture to retain control or to “own” their ways of “naming the world” is through identification of themselves (lVlishler, 1990, p. 124). Some members chose to be named. The names of those who wished to remain anonymous have been changed. Only in some cases where the name is attached to a position (the leaders and the support person) can the difference be noticed. All three paid staff members and the support person consented to be identified. No distinction is made between the real names and anonymous names of the other participants. All letters to participants, consent forms and interview schedules were approved by the staff of HOPE and the Behavioural Sciences Screening Committee for Research Involving Human Subjects at the University of British Columbia. They are included in the report as Appendices.  Analysis and Interpretation of the Data McMillan and Schumacher speak of the “emergent design” of qualitative research (1989, p. 179). The steps of selecting participants, collecting data and analyzing data are expected to be circular and interactive rather than linear.  93 Researchers are meant to be sensitive to signals from the data of changes in emphasis as the research progresses and interpretations are made. It is believed that simultaneous data collection and analysis increases the productivity and relevancy of the data collection (Merriam, 1988a). Collection of the data was carried out according to the design. Two additional short interviews were held with the Director of HOPE, Moyra White. Analysis of the data involved a dynamic interplay between the data, the themes that emerged and the conceptual frameworks used for interpretations. The collection and analysis of the data took six months. Unlike experimental research based on random samples, case study design does not intend to provide conclusions that can be generalized to all groups. Instead, data are collected to provide rich descriptions of the phenomena of concern. Conceptual frameworks were selected to focus and organize the data for the purpose of providing greater understanding of a context-bound phenomenon, in this case, HOPE Cancer Health Centre. In some case studies the descriptive data are used to illustrate, support or challenge existing theoretical assumptions (Merriam, 1988a). This was not attempted in this study because clarification of the findings were first required. The data were refined and interpreted using selected concepts and propositions from theoretical writings. First, the data describing HOPE as a self-help group were linked to the framework of characteristics on seff-help groups. Second, data from the participants on their experiences of learning were organized and  94 interpreted using the concepts and propositions from the literature on adult learning.  95 CHAPTER FIVE HOPE CANCER HEALTH CENTRE  HOPE Cancer Health Centre is a community based self-help organization that is believed to be unique in Canada because it was organized by cancer patients and is still operated by cancer patients. This chapter begins with a brief preview of HOPE. The rest of the chapter provides a more comprehensive description of HOPE Cancer Health Centre as a self-help group in the larger context of care giving systems and as a “learning community” for its members. The descriptive data are organized in the framework of characteristics of self-help groups which was developed in the review of literature on self-help groups in Chapter Three.  HOPE Cancer Health Centre: Preview HOPE Cancer Health Centre is a voluntary organization for helping cancer patients. It grew out of a small group of people who came together to help each other fight cancer. This section is a brief overview of HOPE and includes information about the origin, purpose, activities, maintenance and funding, and membership of HOPE.  Origin The HOPE organization began in 1980 when some members of a small support group realized they might be able to help other cancer patients by telling  96 them about the ways the members had helped themselves. They recognized that they had developed knowledge through their own experiences of fighting cancer. They had practiced self-help and were impressed by the power of self-help and group support and this encouraged them to assist others. They also wanted to have 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 for HOPE in his home. His vision of a more accessible location for HOPE materialized in 1987 when they moved to the present “store front,” identified by a large blue awning at 2574 West Broadway. From a beginning as a small support group of terminally ill cancer patients, HOPE has successfully transformed itself into a community based organization with an educational focus.  Purposes The purposes of HOPE Cancer Health Centre have been formally defined in the 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 getting well.  6.  To do whatever is necessary to aid the patient in dealing with cancer and regaining health.  97 Activities In order to achieve these purposes, a variety of activities and programs have been planned and carried out at HOPE. As in most charitable organizations, the activities have changed over time, often depending on the resources of money and staff. The following is a list of activities that have happened over the years at HOPE: •  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, about treatments for their disease, and about ways they can involve themselves and participate in their recovery. The introductory workshop is the central educational program and attendance at an introductory workshop is the means to formal membership in this group.  98 Funding and Maintenance Maintenance of the organization has been largely influenced by the dedication of the leaders in overcoming two main hurdles. They began without sanction or support of other agencies of cancer care and have had to work carefully to attain credibility in the community. Currently there is more acceptance of their philosophy and many members are referred by health care professionals. The organization depends on word of mouth advertizing and does not attribute funding to formal advertizing. A film made by the Knowledge Network in 1986 is still shown on community television channels and frequently cancer patients contact HOPE after viewing it or after seeing or hearing one of the leaders discuss HOPE on a television program or radio talk show. The second hurdle has been financial. The funding for the organization, which comes from several sources, is not consistent. Currently there is a charge for the introductory workshop. In 1980 the fee for the workshop was $35.00; it is now $385.00. A $135.00 subsidy made by the Fraternal Order of Eagles reduces the cost to members to $250.00. This fee pays for a support person to attend with the cancer patient. The fee can be waived by HOPE for those unable to pay. Another large source of funding is donations and bequests from members and members’ families. Several service clubs and social clubs connected to private enterprises have made generous lump sum contributions, often targeted for capital expenditures such a furniture or office equipment. Recently, the “Face the World  99 Foundation” and the “John and Lotte Hecht Memorial Foundation” have made commitments to contribute monies to HOPE. The leadership of HOPE has become more formalized over time.  The three  part-time “leaders” currently receive remuneration. A office support person is employed when funding is available. Volunteers help with office duties such as mail outs and phone lists. The operating budget of HOPE has varied depending on the amount of funding received. Tn 1993, which was defined as a “trimmed back” 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 because keeping membership statistics has not been a priority of the service-oriented organization. Attendance at workshops ranges from 12 to 24 participants (including support persons) and from six to ten workshops are held each year. It is estimated that around 2,000 cancer patients have been helped at HOPE since it began 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 known that more women than men join. Members range in age, in the seriousness of their prognosis and the length of time from their original diagnosis until the time they join. Many members come after exhausting the available traditional  100 treatment regimes. Neither the socioeconomic level nor the education level of members is recorded.  HOPE as a Self-Help Group A framework of distinguishing characteristics of self-help groups has been developed out of the literature on self-help groups in Chapter Three. These characteristics can be used to describe and compare individual self-help groups (Borman, 1979; Levy, 1976; Powell, 1990) and to differentiate self-help groups from other care giving systems: professional care and informal care (Checkoway, Chesler & Blum, 1990; Powell, 1990). The framework includes the following characteristics: focal problem, purpose, source of help, knowledge base, basis of power, 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 the functioning of a particular self-help group, in this case HOPE Cancer Health Centre. It is also a useful way to identify the uniqueness of each group.  Focal Problem The focal problem of a self-help group is that area of human concern around which the activities are focused. People living with cancer have a number of difficulties. The physical, emotional and social manifestations of the disease are compounded by the often devastating effects of the traditional treatments.  101 Maton (1989) suggests that the focal problem of self-help groups can be described in terms of the degree of social network disruption and the degree of related 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 of both these symptoms was found in all sources of data. This is an example taken from the transcripts of Maggie’s interview: I think cancer is a very isolating disease. People sort of pussy foot around it 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, no matter what. Therefore [people] are afraid and they don’t really want to talk about it (V2, 184). .  .  .  Her words clearly illustrate the central problem experienced by most cancer patients. Five themes emerged from the data that describe the focal problem which HOPE is organized to address. They are intensity of feelings, difficulty expressing feelings, loss of control, lack of knowledge and limited resources.  Intensity of Feelings One HOPE brochure states “A diagnosis of cancer fills one with feelings of fear and isolation.” This statement was supported many times by the participants. Barbara spoke of the “sense of isolation and desperation that many of 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 can happen to you” (Lii, 24). Bridget stated “I was just--I guess, shocked--even then part of me was saying this isn’t true, this isn’t happening to me” (L2, 47).  102 Fear of death and fear of coping with the disease are both very real for cancer patients. An older woman expressed her own feelings in the context of her age: At my age the big thing in my mind wasn’t am I going to die--whereas it is with someone in their forties. It’s always an issue but it wasn’t a big thing in 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 right and I know I feel okay and everything but during the day I put on this brave front but at night every time the lights go off, I lie there in bed awake all night thinking, ‘I’m dying, I’m dying, I’m dying” (L9, 106). David stated that “At first you think, you know, cancer, it’s just, ah, it creates connotations and pictures of everybody dies from cancer sooner or later or maybe sooner so at first when I heard the original diagnosis  .  .  .  I thought, ‘Well, I’m a goner,’ and left the doctor’s  office feeling that way” (L5, 164). It is apparent that feelings are deep and are problematic for cancer patients especially in the early stages of diagnosis and treatment. Feelings experienced when cancer growth recurs after treatment may be even more devastating. After hearing that a biopsy revealed cancer, Alex related her reaction as “pretty devastating. I was shocked. Then, three years later  .  .  .  I  had a recurrence, that was to my liver so that was a real blow, worse than the original” (L3, 22). Phyllis also experienced a recurrence and stated: “I was damaged by that recurrence. I couldn’t believe it happened to me. A lot of women feel that way about the original diagnosis--not me. I felt that way when I got the recurrence; it wasn’t supposed to happen” (Lii, 175).  103 There are also difficult feelings related to the effects of cancer therapies. Julia, who underwent chemotherapy treatment, said this: “But the worst thing is the hair loss. I don’t think I could bear that again. It’s such a distinguishing thing about being a cancer patient. I just think this is the hardest part” (L6, 105).  Difficulty Expressing Feelings Compounding the problem of having intense feelings of fear, isolation and shock 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 cancer patients share (Borysenko, 1982; LeShan, 1977; Simonton, Matthews-Simonton & Creighton, 1978). Also contributing to the problem is an apparent difficulty in our culture of speaking freely about cancer; for some reason there is stigma. Reflecting on her feelings after being diagnosed, Maggie stated: “There is this idea, 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 years it was hidden if somebody had cancer” (V3, 247). Jim stated: “At first when I was diagnosed, 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 when discussing 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, but I 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 I needed. He wouldn’t let me talk about it. He didn’t want to see me cry or talk about it. He would discuss other things rather than it. But I needed someone to talk 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 about it and they were sort of starting to wonder why I was taking so much sick time off but I only told a couple of close colleagues. Then when I started loosing my hair with my chemotherapy and I bad to start. Because I went to work during my chemotherapy. But I guess the two would be fear and the aloneness: the two big emotions that I felt (L4, 53).  Sense of Loss of Control Another theme expressed in the interviews was a great sense of loss of control as the participants manoeuvred within a medical system that focuses on physical cure and is mostly delivered in an authoritarian or paternalistic style. Glenda’s first request for support focused on this feeling. She recalled to me her statement to a social worker at G.F. Strong Rehabilitation Centre. “I said, ‘I can’t go on like this.’ I said, ‘I just hate it. I feel helpless. Everything is being done to me and I can’t do anything for myself. I am on medication, I am on pain pills. I just hate this” (L9, 109).  Lack of Knowledge One cause for feelings of loss of control is a lack of prior knowledge about specific cancers and their treatment. Knowledge is necessary for full participation  105 in decisions related to the treatments and care, yet cancer patients may remain exposed only to information provided by the medical care system. They often do not know that additional information is available. Further they may not be aware of 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 the hospital two days later and had a mastectomy. At that time I didn’t question anything because I didn’t know any better. I didn’t know what questions to ask or anything. I just wanted it off’ (L8, 13). She continued to say that during her chemotherapy treatments, “I started getting very, very depressed during that time. 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 cancer that I was diagnosed with, I experienced a challenge finding literature in the library at the Cancer Agency. Initially I was told by the Cancer Agency librarian that the service is provided only for the professionals in the agency. After I explained to him my interest and how I had not found anything at the university library, he agreed, with some hesitation, to make an exception and do a computer based literature search for me. At the time I wondered if other patients would be as persistent in their searches. In is worth noting that access to information has improved. Since 1991 the library at the Cancer Agency has had a computer with the Medline CD Rom database available to patients as well as staff (B. Morrison, personal communication, April 4, 1994).  106 Limited Resources and Options Limited resources compound the problems of difficulty sharing feelings and finding information. For instance, the large number of cancer patients treated each year at the Cancer Agency results in overtaxed resources. Maggie expressed the problem: Well, it may just be the sheer numbers of people who are diagnosed with cancer and the legitimate orthodox agencies are having trouble dealing with them. Because they are just overbooked and there isn’t the time to spend with people and there definitely needs to be some better way of dealing with people when they are diagnosed particularly if there is not much that can be done medically. It is really scary (V2, 131). Of great significance to cancer patients is the fact that there are also limitations to the numbers and kinds of medical treatments available. A diagnosis of “terminal” is a signal that the current treatment regimes are not effective for that particular kind of cancer and its stage of development. The problem of being labelled “terminal” by professionals within the medical system is that it is “built on the assumption that illnesses can be treated by time-limited, episodic interventions that have a definitive effect” (Levine, 1988, p. 168) and people become conditioned to think that only a physical cure will help. Patients are rarely encouraged to seek other means of healing or told of ways they can help themselves. Yet, it is evident that some persons become seekers after receiving this diagnosis. Marilyn told me “I had a lot of treatment and nothing seemed to be working. That’s when I joined HOPE” (Li, 19). Moyra related her situation prior to joining HOPE: Chemotherapy wasn’t working for me and most of the people that came to the first group [of HOPE] were all considered terminal and there really  107 weren’t a lot of treatment options left. There was palliative care. So it was more like, it was like trying to go beyond it and to be told that there was nothing that could be done. I know personally for me, it was very demoralizing. So I don’t think HOPE would have been founded if we responded well to medical treatments (Vi, 24). She continued to say: “There were a lot of people willing to support us in dying but no one that was willing to support us in staying alive. So, that is why we had to do it ourselves” (Vi, 40). The founders of HOPE, described as “alone and afraid,” searched for support in the community but found no one willing to help them. They then formed their own self-help group.  Purpose HOPE’s newsletter, which is published bimonthly, carries the logo “HOPE: Fighting Cancer.” “Staying Alive” is the title of the introductory workshop offered by HOPE for cancer patients and their support persons. The advertising brochure for the workshop suggests that “through this workshop participants will gain experience, insight and information to help them deal effectively with cancer on a personal level.” It further states that “After years of operation HOPE is able to offer help and encouragement to all cancer patients who wish to take an active part in their cancer treatment and recovery process.” These purposes of helping and encouraging cancer patients to deal effectively with cancer on a personal level are identffied in written materials and are supported by interview material from HOPE leaders and participants in HOPE.  108 The data emerged in response to interview questions about the mission of HOPE and also about the benefits for members. The two objectives that appear to be related to the purposes are to stay alive by fighting cancer and to improve the quality of life for cancer patients.  Fighting Cancer and Staying Alive Moyra, the current Director of HOPE and the sole remaining founding member, recounts the early stages of HOPE and how the members turned to each other for support in what they all viewed as a singular challenge- -wanting to stay alive. Moyra recalled that: At the beginning it was more for mutual support with the idea that people that believed in the same thing as we did, which was trying to stay alive with cancer, and it would be easier to talk amongst ourselves, that we needed support, we needed somebody else to believe in it (VI, 5). These people continued to meet and they named themselves HOPE. As an anagram it stands for “Helping Ourselves Psychologically Everyday” but as the organization has been called the HOPE Cancer Health Centre for some time, the HOPE part does not get translated as often. There is a lot of evidence for the fact that the term HOPE has a great deal of meaning in itseff. It was a frequently expressed outcome and appears to replace the despair commonly felt by members when they first come to HOPE. Eventually sessions for new members were developed on the basis of the experience of the founding members and their own success with prolonging their lives. Although the number is not known, there are several members who are  109 living examples of the benefits of belonging to HOPE for the purpose of staying alive. Moyra is alive and cancer free after being told in 1980 that her cancer had spread to her lungs and there were no available treatments. The participants for interviews were selectively chosen for their reputation as successful learners and cancer survivors. Barbara, Maggie, Alex, Bridget, Phyffis, David, Glenda, Barb P., Jim, Jane, Julia and myself all have “clear” reports. It was also known that there are 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 and they pop up periodically. We had one woman come in not long ago who said she had been given up on. This is before my time, which is about 8 years ago. And here she was hale and hearty and if it hadn’t been for HOPE, you know she wouldn’t have done that (V2, 93). .  .  .  All made changes in their lifestyle and in their lives and attribute at least some of the changes to their participation in HOPE. Bridget stated “It has made a difference in as much as I am here five years post diagnosis and in remission, I mean recurrence free. And it is a good feeling for me to think that I participated in that” (L2, 524). Marilyn reflected: “Well, my health turned around and I didn’t know exactly what changed it but I wasn’t about to let go of anything that might be keeping me well so HOPE was part of it” (Li, 252). It is also known that many participants sooner or later die from their cancer disease. Many come to HOPE as a last resort at a time when their cancer is already very advanced and their energy is diminished. Claude Dosdall, one of the founders and the Director of HOPE for twelve years, died in August, 1993, fifteen years after his diagnosis of a brain tumour.  110 Improved Quality of Life In his book, Claude wrote about being discouraged about the numbers of participants 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. Finally I decided that in the HOPE groups I should also focus on improving the quality of life as well as on prolonging it. Over the years we have had wonderful feedback from people, relatives, and friends, who have assured us it is a worthwhile goal and that we are succeeding” (Dosdall & Broatch, 1986, p. 91). In speaking of her deceased husband, Avril said: “He really believed that almost to the end, you know, the things he learned at the weekend workshop could help him and it certainly improved the quality of his life” (L10, 302). A rather special testament to the success of HOPE in improving the quality of people’s lives was the large number of relatives of deceased cancer patients at Claude’s funeral. When recounting successes of this organization, Maggie focuses on both objectives: “The successes are that there are still people alive who would not have been alive had HOPE not been here. The successes, even for a brief period of time, 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 Cancer Health Centre as a self-help organization. Levine (1988) has identified the two central purposes of self-help groups to be assistance to individuals to cope with difficult life circumstances and social activism usually focused on changing the public definition of certain conditions viewed as deviant. The above data provide solid support for the first purpose. Although there is evidence of advocacy for  ill cancer patients, it cannot be said that HOPE has social activism as a central purpose. In order to achieve its purposes HOPE established both programs and a place in the community. Moyra considers both these aspects to be significant: “To have people with cancer have some assistance and support and a safe caring place to be, I think could make the difference between extending their lives or them dying in despair” (Vi, 483). An actual physical location is also viewed as important.  Safe Comfortable Place Moyra reflected: There was only a handful of us and we needed a place where we could talk honestly and openly about what was happening. To provide a forum or a safe place to talk about our beliefs and the belief of extending or trying to stay 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 people with cancer a place of their own, because there isn’t anywhere to go. There is no AA or halfway house or club” (Vi, 606). She provided a current example of “a lady who last week told me things about having cancer that she had never told anyone else before because she felt that ease. That, in fact, we ended up killing ourselves laughing over some of the things she has done” (Vi, 598). The significance of having a location where people can go to was highlighted by participants as well. When asked at the end of the interview for any other important information, Bridget replied: “I guess what’s important to me--I may  112 have felt the need for it only once--that HOPE is a safe place that you could come to, no matter what or when or why” (L2, 688). This location also provides space for the activities of HOPE which are designed to help achieve the purposes. Barbara mused about the opportunities that are provided. Well, that opportunity to connect with others, to know that you are not alone in it, that you can benefit from other& experiences. That it is inherently useful and helpful to talk, to tell your story, to talk about what is happening. To become more informed about cancer, and about your particular cancer. To know that you have access to a lot of information that you might need, both traditional approaches and alternative approaches. So that, those are all benefits that people seem to be able to recognize right at the beginning. Once they have been through the workshop and time goes on the contact develops. It is also, I think, the additional benefit of beginning to learn more about oneself and that opportunity to grow a little bit more; to come to grips with one’s mortality; to look at our spiritual nature, our spiritual needs (V3, 220). .  .  .  The purposes of HOPE are underpinned by beliefs about the value of cancer patients becoming participants in the healing process by helping themselves. Study of the beliefs that formulate the programs and activities developed by HOPE Cancer Health Centre will be presented in the later section “Knowledge Base.” The next section focuses on the source of help which is the members themselves.  Source of Help A distinctive feature of self-help groups is that the source of help is the group members themselves. Members are attracted to self-help groups on the basis of identification as peers and a feeling of oneness and mutual assistance  113 which is possible because of the similarity of their experiences. These experiences are with the problem itself and ways of dealing with it. Compared to professional help where the focus of concern is on the client and help usually moves in one direction, self-help groups imply a reciprocity. In the give and take of sharing, the members are both receivers and givers. Concern by some professionals that selfhelp groups emerge as a substitute for professional help in a climate of scarce resources has been countered by the view that the knowledge base has a different and valuable quality (Borkman, 1976; Powell, 1990) and the fact that members receive benefits from participating in both roles: the role of participant and the role of provider (Riessman, 1965).  Mutual Assistance Concrete benefits accrue from receiving help from peers through knowledge and information that is grounded in experience. Benefits also result from the positive feelings of having one’s own experience validated by hearing about others with the same experiences. Barbara spoke of the benefits of mutual assistance by peers, meaning those who have certain experiences in common: It really eases that sense of isolation and desperation that many of us come with. When they hear somebody else’s experience, they can identify with them and that is helpful in easing that sense of isolation and desperation that they often come with. to know that you are not alone, that you can benefit from others’ experiences (V3, 362). .  .  These sentiments were also expressed by workshop participants. Recalling his experience in the workshop, David said “I was so excited that there were other people who had experienced the same things as me, whereas you always think you  114  are the only one” (L5, 141). Other more recent workshop participants described what they liked best about the workshop as “free flow of information and the camaraderie,” “sharing of experiences,” “meeting others in the same situation,” “comradeship,” “the warm feeling of sharing experiences, thoughts and emotions openly” and “being in a group where we had experiences in common.” It was especially moving to hear one gentleman say: “This is the first time we have spoken with others about cancer.” Evidence of receiving help about treatments or other ways of dealing with cancer was significant. Many global statements were made about membership in HOPE, such as “it turned my life around,” and many statements referred to specifics such as “help with visualization,” “information about diets” and “encouragement to seek more information about my cancer.” There were also examples of specific help from other members. Bridget talked about attending the introductory workshop: Through HOPE I learned of a naturopath. that one of the other participants in the workshop had been to, who was a lymphoma patient. In fact he was really toxic after his chemotherapy, The treatment almost killed him, even if the disease didn’t. So he was really, really toxic and he went to this naturopath and he said he came out feeling fantastic after he had gone through the detox[iflcation}. So that was what I did after going to HOPE (L2, 171). .  .  .  .  .  In self-help groups the aspect of mutual aid that includes responsibility for others as 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 of contributing to someone else’s knowledge and to their good feelings. This phenomenon was first identified by Riessman as “helper therapy” (1965). Bridget  115 talked about being in the group: “You have a feel for what somebody is going through. And also, you come and you share your feelings with the group members but you are also there for them and so that is the giving and the taking of that relationship” (L2, 598).  Leaders Borkman (1976) posited that the more experienced members of groups, those that have participated for a period of time and have a greater amount of experiential knowledge, become recognized as oldtimers or as veterans. It is usually these individuals that provide leadership to the group. This is true at HOPE even though Claude and Moyra began leading workshops less than a year after they formed the support group. The other staff positions are filled by nonfounding veterans, Maggie and Barbara, and other veterans help in a volunteer capacity. Factors other than length of time in the organization also influence transition to leadership positions. Confidence in their knowledge base is identified as one of these factors. This could be related to their experiencing and learning over a longer period of time but is also related to success in dealing with cancer and to developing knowledge about assisting people. Moyra said “Because of our experience 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 as being quite different than it had been. She related this:  116 But it is certainly not the same for me as it used to be. I don’t feel that I can tell people that come in the same things I would tell them years ago, I don’t feel that they are here to hear what I have to say in the sense of my own personal stuff. They are here to get some guidance and some advice as to how to handle cancer. So it has changed a lot in that sense, though as I mentioned before, it is to learn from people but it is not the same kind of learning. I no longer feel like a peer in the sense, even though I have had cancer I don’t feel that I am on the same level as someone who has just been diagnosed and that is not meant to say I’m better or worse it is just that I feel that I have developed skills to assist people whereas before, it was very sort of a mutual exchange and I feel a lot more different about my position and the way I interact with people (Vi, 127). The actual teachings of HOPE are called the knowledge base and will be explored in the next section. Leadership can be encouraged through the attraction of members to oldtimers who appear to be confident in their knowledge. Maggie states: “Because I believe so strongly and I am so enthusiastic about it; therefore people look to me then for help, so it just sort of happens” (V2, 493). Another factor influencing movement to leadership positions is a desire to be 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 of changing her role. She stated: “I am helping out and I would like to do more of a leadership role because I feel I can share and I have time now and I want to be doing something positive and constructive with my life, not just keep myself busy” (Vi, 245).  Commitment to maintenance of the organization is another motivating factor. Because of the need for leaders to maintain the organization, this is discussed in the section on inputs.  117 Although all the leaders state that the work is difficult and emotionally draining 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 some of the things that I need to work on. And also from a, just a personal goals point of view, I mean, I like what I do. I feel good at being able to help people. For me there are benefits (V2, 588). And Moyra said: “It is still a ‘selfish t thing that I am doing in some ways. So it is still fulfilling my mission if you want to call it that. It is still helping me and it is still helping other people find something that they can do” (Vi, 68). Further reflection revealed: “I am realizing too that, urn, to have confidence in myself and to believe and use my own ideas before other people as being very, very exhilarating” (Vi, 499). One commonality in the experience of the current leaders is a slow transition toward leadership, where tasks were assumed over a period of time and encouragement was a recognizable ingredient in the process. Barbara said this: I guess it was the encouragement of Claude and Moyra and I think they did it well--smartly and very wisely--by simply inviting me to sit in on the workshops as, just a backup, just to tell my own story and gradually I really liked 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 but the leaders maintain the view that there is strength in the members and that the contribution 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 to explain that to them when they come through, that people come not just to learn something but also to teach something, to share their own experiences” (V3, 351).  118 More specific examination of the content of what is shared and espoused by HOPE Cancer Health Centre is discussed in the next section.  Knowledge Base Antze (1976) suggests that the specialized teachings of the group are based on the developed wisdom about the focal problem; he refers to this as the ideology of the self-help group. This body of wisdom has also been designated experiential knowledge (Borkman, 1976, 1984, 1990; Powell, 1990). The experiential quality differentiates it from professional knowledge and lay knowledge and is based on the 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 Cancer Health Centre could be identified as “based on experiential knowledge” was not evident. It is now apparent that the teachings of HOPE are experience based. The focus of this section is the content of the knowledge that collectively could be called the ideology or teachings of the organization. These teachings are integral to the learning experiences of the members of HOPE, which are the focus of Chapter Six. The members developed the ideology and continually inform it through their personal experiences.  Knowledge of Cancer Care and Recovery As an introduction to this section, a statement from Claude’s book demonstrates both the conviction with which members hold experiential  119 knowledge and also some of the content of the knowledge base that is the basis of HOPE’s teachings. He stated: I know that knowing myself is the best insurance program for getting well and 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 pretending that 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 in this passage from the same book. I have come to know the incredible power with which the mind can influence the body. My personal experience has taught me about psychoneuroimmunology. My psyche and emotional self directly impact on my brain and my nervous system and in turn my brain gives messages to my immune system. My immune system keeps me well when it functions well 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: “I think that perhaps people should realize that experience is just as valid as going to school in a sense. And if there is no school to go to that perhaps what we have formed is a place where people can come and learn from us” (Vi, 299). The experiential knowledge of the founders and the members has become the collective wisdom of HOPE. As the basis of the teachings of HOPE, it is also referred to as the ideology of the group. Certain themes emerged from the data  120 related to this knowledge base that are interrelated. Some of the themes are identified 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 to live, come together to share feelings, especially fears,  .  .  .  put faith in yourselves”  (M. White, personal communication, October 1, 1993). The beliefs are organized under the following themes: choose to be alive, know yourself, help yourse]f selfhelp techniques, get information and know resources and be human. Collectively the ideology could be expressed as “self as active participant in healing.”  Choose to Be Alive It is believed that in order to actively participate in healing it is necessary to consciously choose to be alive. Otherwise people may not make the necessary effort. David expressed it this way: “Because if you don’t want to live or you don’t feel that you have got something more to do then maybe you can get into that rut of giving up or whatever” (L5, 238). When asked about important learnings at HOPE, one of the items listed by Maggie was: “Learn to live, and I believe, like Bernie Siegel says, it is a question of learning to live, not trying to not to die. And in that process, if you lived as well as you can for however long you have left, then it’s okay” (V2, 319). Claude explained that not wanting to die is a passive rather than active state and so it is important to discover one’s purpose in life. Therefore participants in the workshops are challenged to think about their purpose in life and to examine their deepest feelings about life and death. Maggie suggests this  121 exploration needs to include the question “do I really want to live?” because some people in the workshops discover that they do not have a strong purpose or desire to live. She also believes people can make an informed choice: “It has to be an informed choice and I feel everybody has to have that knowledge and then, make the decision: ‘It is too difficult for me,’ or ‘Oh, no, I don’t want to do it,’ or whatever. That is their choice” (V3, 313). Quality of life is stressed and it is believed that making a choice to be alive supports quality of life.  Know Yourself Causation of cancer is known to be multifactorial. It is believed that not enough emphasis has been place on emotional, social and spiritual factors in consideration of the etiology. Therefore, examination of the self along with environmental factors is suggested and this requires examination of the cognitive, emotional and spiritual dimensions. Barbara states “Well our focus is a psychological and emotional one, to look at what that means. It is a holistic approach.  .  .  .  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 my life. There was stress there, So really going to HOPE made me sit up and realize what these people are doing for themselves and as you say you take 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 no clue that what was happening to me was somehow detrimental or that I should take a step back and have a look at it and say analyze it a little bit more and no clue what I was doing and then all of a sudden when the .  .  122 cancer happened that is exactly what I did is I had a look and “Holy smokes!” I was in trouble there (L5, 650). Some health care professionals criticize this kind of self-examination, saying it 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 all the onus is on them. I don’t feel it is. I think ultimately it is, but I think as far as blame goes, I really disagree with that. We try, at least, I’m trying to not blame people (Vi, 636). The notion that individuals can take responsibility is a concept that is meant to be applied in the present and the future and recrimination over past events is discouraged. The self-examination is meant to provide insight and some ideas for some changes that might be helpful. I myself have struggled with self-blame and have been gently discouraged from dwelling in that mode. Members are encouraged to find means of accessing inner information by writing journals, practicing meditation or watching their dreams. Consultations with psychologists or psychiatrists are also recommended as adjunctive help for both knowing oneself and for strengthening personal resources.  Help Yourself It is believed that shifting from the mode of being a patient or “victim” into a mode of helping yourself is necessary to mobilize resources for healing. The self help position is viewed as a position of strength or empowerment. Claude quotes Kenneth Pelletier in saying: “when the hopeless-helpless cycle is altered, there is a chance to engage in self-healing” (Dosdall & Broatch, 1986, p. 25). Moyra discussed this aspect of healing and said:  123 I also feel that I wouldn’t be alive if I hadn’t taken myself out of that patient [victim] mode. The people who really learn what self-help is take themselves out of being a sick person and they start realizing that they need to form another image of themselves, another persona (Vi, 325, 378). .  .  .  Barbara states “the mission is to help people with cancer to empower themselves to 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 is deciding what treatment we will accept or not, what vitamins we will take or not, whether we will change our diet or whatever. We accept and make those 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 to be 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 a motivation force for people, not sort of the end of the line. For people like you just don’t come here and do the stuff, you come here to be motivated and then because it is self-help then it is up to you to do and to seek out other ways of doing it. You might get the ideas here but you are still going to have to go to other places (Vi, 186). Maggie stated that “most people when they finish the workshop they have that sense 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 certain things that may influence the course of your disease and can make a difference in your disease but that there are other factors that we don’t know about (V2, 784). The majority of “things to do” could be classed as self-help techniques. It could be argued that these techniques were not developed by HOPE; therefore they should not be considered knowledge that is experientially based. It is firmly  124 believed that the knowledge of the techniques becomes experiential and that this is the basis of the learning in the group. The members use the techniques and then can speak from experience when telling about them. They can make knowledgable 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 cancer Stress and cancer Role of the support person Effective communication for health professionals and patients Relationships and family dynamics Diet and exercise Emotions and their role in disease and recovery Prevention Meditation, visualization and positive thinking are all related activities that are based on the same concept: activities of the mind have a direct impact on the internal workings of the body. Maggie emphasizes, as most important, learning about the mind/body connection. Well, the biggest one of course is learning that you have some control over the 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 have divorced that (V2, 219). .  .  When asked to describe the beliefs of HOPE, Phyffis said this: “The belief that everybody can help themselves. Some to a much greater extent than others but there is help inside of each person if they want to reach in and get it” (Vii, 131).  125 Bridget said “We have capabilities within us.  .  .  .  Here the belief is that we have  that power” (L2, 307). The visualization techniques that were first described by Carl Simonton suggest positive results from picturing in the mind an activity that represents destruction of the cancer cells. Barb P. practiced this. “When I was having my radiation I would lie on the table getting my radiation and I would just envision those radiation rays just going in and just getting rid of that tumour and I was really positive” (V4, 316). Other forms of visualization are used to achieve deep states of relaxation thought to be conducive to mobilizing the body’s healing energies. A similar “mind” technique is that of positive thinking.  Positive attitude One session of an introductory workshop was devoted to discussion focused on “What do you believe positive thinking is?” A point of contention appeared to be a 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 that everything 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 come from something inside that you believe that you can do that makes you feel positive. I mean there is no good someone saying to you that you have got to be positive. How can you be positive when you are scared stiff and you are thinking this thing is growing or whatever (V2, 262). Glenda believes that what worked for her was to emphasize the positive side of an event rather than the negative. She said:  126 The HOPE centre is definitely about positive attitude and teaching you to My kid is a straight A student and I turn your negatives into positives. know 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’ instead of ‘2 wrong.’ It is just learning to focus on the positive (L9, 184). .  .  .  Exyression of emotions The holding-in of emotions is believed to cause harm to the body and create an atmosphere for cancer to grow. Persons usually have most difficulty expressing anger and disappointment, emotions often associated with the experience of cancer. An information brochure about introductory workshops states: “People who 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 are feeling first of all and whether that be anger or resentment or sadness or fear or whatever” (V2, 179). Barbara said: “It is inherently useful and helpful to talk, to tell your story, to talk about what is happening” (V3, 222). Support as an important adjunct to self-help has been mentioned several times and it reflects the beginnings of HOPE and the need the members felt for having understanding and support for their ideas. To expand the cancer patients’ circle of support, spouses or close friends are invited to the workshops. Maggie stated: “That is why we have the support people come to the workshop because it has to be communication between the two” (V2, 253). Marilyn discussed the importance of having her husband attend the workshop. My husband participated with me at the group and this was absolutely essential because he now has an understanding of it. He was not into psychology, I get continual encouragement from him to keep doing my .  .  .  127 meditation and great encouragement to go to my support group. I feel without him going to the workshop, he wouldn’t have the understanding how important it is to me (Li, 102).  Know and Use Resources Knowing and using resources is an important aspect of “being in control” and another concrete way of supporting the notion of being actively involved in healing. Barbara states that getting information is an important goal: “To become more informed about cancer, and about your particular cancer. To know that you have access to a lot of information that you might need, both traditional approaches and alternative approaches” (V3, 220). The information is needed to be able to participate in decisions related to treatments. In reference to these decisions, Claude explained: “I had to know as much as possible because I believe that those who want to take control over their own health and lives must know the facts” (Dosdall & Broatch, 1986, p. 74). In talking about the early mission Maggie said: “Their role was to encourage people to, not to necessarily not take medical treatment but to look to see what they could do in addition to it--taking medical treatment was not enough” (V2, 28). Moyra confirmed this view. People also believed that we were encouraging people not to take the treatments which wasn’t true, we were encouraging people to look at the treatments and be sensible about them and also realize that perhaps there were more resources beyond what our cancer society could offer (Vi, 97). The members reported benefits from pursuing information sources. David said this: “What I learned is that, typically the type of tumour I had doesn’t  128 spread from the brain. It stays there. So I was kind of confident that mine wasn’t going anywhere, was staying there and I could beat it where it was and I wouldn’t have it” (L5, 292). Barb P. claimed that she learned a lot, “especially about new age 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). She states: “They may not have the same experience and may not respond the same way but I feel that they should know what is out there and let them decide if they want to try” (L4, 374).  Being Human Although not explicitly said, being “human” seems to be an umbrella for the belief that it is healthy to recognize the negative feelings that accompany cancer and 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 having cancer and about the despair that accompanies a diagnosis of cancer. It also includes permission to be cheerful and have fun. Moyra said: “It is perfectly permissible 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 of HOPE. As such they are the body of the teachings to which new members are introduced. This system of beliefs is called the group’s ideology and can be summarized as “self as participant in healing.” The ideology is central to the learning experiences of the members of HOPE. Different forms of learning, such as integrating the central beliefs and extending learning within the frame of the  129 beliefs, are all related to the ideology. There is also a set of beliefs that relate to the ways that the members are assisted and define the roles of the leaders.  Assisting Peoiile with Cancer While the main body of knowledge used by HOPE in the teachings is focused on dealing with cancer, the leaders all acknowledged some expertise in helping people. In other words, the process of helping other members learn became an area of interest for the leaders and they say that over the years they have accumulated knowledge in this area. All the leaders commented on their learning about helping other cancer patients. 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’t work, we have been able to put a program together which we didn’t have before” (Vi, 292). Maggie spoke of her improved communication skills; Barbara mentioned “a growing expertise,  .  .  .  We learned more about communicating with  people in groups” (V3, 30). When asked where they have gained this expertise, Barbara said: “Well, a lot through experience of working with people, with self education and with courses as well: taking courses and workshops.  .  .  .  and taking  part in a lot of the research as it developed” (V3, 37). She cites the growing expertise of the public as a reason to become more knowledgeable and “come up to their expectations as well” (V3, 46). Even with training, their own experience in  130 healing is what is highly valued. Moyra said: “I think to become a veteran selfhelper you have to have really helped yourself’ (Vi, 341).  Value of Sharing There is a high value placed on the activity of sharing. It is hoped that the process of learning from each other in the group and getting messages of looking at their own lives will be motivating. Maggie said “That from their own experience of what had helped them to stay alive that they could see commonalities, that people could look at and see if they applied to them and see how we could change so people could try something” (V2, 20). The leaders tell their 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 that and I think perhaps my willingness to tell about some of the things that have been very hard in my life helps put the other person at ease and does make them on the same level as a peer” (Vi, 404).  Sgie “Normalizing” Milieu New participants said they enjoyed the “camaraderie,” and said the atmosphere was “relaxed and very human, very safe.” Words such as “caring,” “open,” “warm,” “interested,” “concerned,” “inspiring” and “vibrant” were used to describe not just the leaders but members in the groups within the organization. “Having a chance to speak out without being censored” and “the honesty with which people spoke and did not have to hide their emotions” were two comments  131 about what participants “liked best” about the workshop. This aspect is fostered by the actions of the leaders who are described as “open and honest.” When asked about what works for new members, Barbara said: “Well, the kinds of things that worked for me.  .  .  .  First and foremost it is validation of their  situation, where they are now, what they are going through. The sense that at last somebody is hearing what I am going through” (V3, 212). Bridget said: “I am just talking about the power within everybody that we have and they just, well they encourage those beliefs. I mean, they don’t- -you feel safe having those beliefs and expressing that you have those beliefs” (L2, 311). She continued to talk about her workshop experience. I remember when we came to the workshop I was absolutely terrified. I thought, “Boy, am I going to be, you know, judged, about a cancer personality” or “What have you done to yourself to get cancer and those things.” I thought “Oh, it is going to be a really morbid weekend. You know, people sitting around crying and--well, we laughed, we cried but we laughed so much that weekend it was, it was amazing (L2, 413).  Importance of Peer Relationship It is interesting that while they acknowledge their expertise, the leaders are careful 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 being able to help themselves. It is harder for me to go through all the steps with people now and I know there is a danger, I can see after all these years of doing it, there is five or six things that if people do them they have a good chance of survival. You can’t just say to do them, because people have to go from wanting help to helping themselves to getting free of this disease in some shape or form or going on the path of dying and dealing with that (Vi, 376).  132 She 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 need someone who has helped themselves but who isn’t so set in their ways that they no 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 in interactions in a “professional” way. She stresses the importance of focusing on the 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 both roles are important. I have to see myself as first, as a human being first of all, in the same sort of situation as people who come to see us. I think to be able to connect and to empathize with people on an equal level, on a peer level is really important. So I see myself not just as a teacher but as a peer to people who come here. I think there is a real danger when you start to think of yourself the expert then you become just like all the other experts who are just giving out and never willing to learn from their clients or their patients 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 I was in the position to sort of tell people, well, you have to do this, this and this and I found that that is not necessarily so that because I took a certain path does not mean that somebody else has to take that path. So yes, in my head there are the teachers and there are those who don’t know and therefore the teachers teach and the students learn and now I see that it goes both ways that the people we deal with can teach us in some ways as well (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 convince other people that what they did was make a difference and now I feel it is up to them to make a choice and even though I still try to put it out in a very positive and very forceful way in some sense, what they do now is not so much a, not to say I don’t care, it is not so important for me to convince that person that they could stay alive because I no longer think that it is possible for everyone to do it. I realized that at the beginning but I just  133 thought that if you, that if I could somehow get it across, it might make a difference. I think therefore I could be more relaxed with the person and less in a sense of maybe manipulating them and urn, I, they don’t have to see my point of view, it is here as information, we care what happens but it’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 influence on the learnings of the members of HOPE. The ideology of the group is not only put forth by experienced peers; it is put forth in a certain atmosphere which values safety, sharing, peer relationships and knowledge grounded in experience.  Base of Power The 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 the perceived 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 in Nanaimo: I came out feeling that there is someone who understands how I feel, like these people know what I am going through and they know. I am sure that I could talk to them and I knew there and then that I wanted, they said that they do these workshops in Vancouver and I knew whatever it costs I wanted 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 sur vivors that are running it. It is not just another professional telling you what to do, it is somebody who has actually taken steps to do it that I think is one of the things that might draw people to HOPE, that might make  134 them want to see some value in what we do. I think that the really big factor is in people accepting the idea is that they have living proof of people who have done it and it is not just some intellectual exercise. It’s kind of a hands on kind of thing (V2, 734, 755). .  .  .  Of interest in this organization is a distinction made by French and Raven that “conformity with major opinion is sometimes based on a respect for the collective wisdom of the group, in which case it is expert power” (1968, p. 266). Members certainly recognized an “expertness” in the leaders. And the value attributed to the knowledge was enhanced by the fact that this knowledge was experiential rather than theoretical, which is the basis of professional expertise. This was certainly the case for David, who said that after talking with the leaders in the ROPE office: “I thought ‘Wow,’ I want to check things out further with these people because their insight was there, they had the experience” (L5, 132). The leaders acknowledge and value both kinds of power. Maggie’s understanding of referent power is revealed in her comments about the kind of empathy she can provide: Being able to talk to somebody about, you know, well I’ve lost all my hair too. 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 who is going to lose their hair or has lost their hair. I mean I can empathize with 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 when you are well yourself’ and “even though I am not a professional, I feel I have a lot of expertise in this particular field” (Vi, 292). It is important to note that the expertise that the leaders identify is of two kinds. One is their experience in dealing with cancer and the other is experiential knowledge developed from  135 working with cancer patients and discovering methods that work for them. The leaders also presented an ethical perspective in relation to their position. Moyra said: “And I guess another thing that has progressed me to being a 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 all the answers, and that I don’t have the power over changing other people. I can 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 human being, be a person (V3, 344). These data describe a base of power similar to what is described in the literature on other self-help groups. The profound importance of the experiential nature of the knowledge base is underscored by this same data.  Composition In the context of self-help groups, the source of help is the members themselves and the composition of the group is some mix of new and older members. The older members who take an active role in assisting new members have been labelled “old-timers” and “veterans” (Borkman, 1976). HOPE has not maintained a “scientific” record of the status of their members; therefore information about the total numbers of living members or of the ratio of newcomers to oldtimers is not available. The mailing list for the newsletter has between 450 and 500 names, but includes some interested professionals as well as cancer patients and relatives or other support persons.  136 One of the difficult realities of HOPE is that many members die from the disease and there is a continual drain on membership. As well, not all persons who attend an introductory workshop stay in contact and are lost as active members. In HOPE there are currently three paid staff positions that are ifiled by veterans. And there are other members that qualify for veteran status on the basis of length of time of their membership. Not all these members are actively involved; there are a few reasons for this. One is a lack of regularity of ongoing activities for members to attend. Also, persons come to Vancouver from out of town 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 reduced participation. She said: “Through the five years, of course, I’ve lost a lot of energy and 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 cancer patients are also viewed as members of HOPE. At times there have been ongoing support groups led and attended by the “support” members of HOPE but there are none presently operating. Support people attend other special sessions such as the learning circle on “death and dying” and get involved in “payback” work similar to cancer patient members. Avril is one such member. The only support person interviewed, Avril related her desire to share in the work of the organization. After Maurice died I just felt that I wanted to come back, it was just a place that I was drawn to. It just made me feel positive and good and although it hadn’t gone well- -Maurice was not cured--it certainly had given him some  137 hope for the time he was alive and I felt very positive about it and I wanted to share it with other people (L1O, 365). She has been doing clerical work on a volunteer basis one day a week for two years. Another aspect of composition revealed in the data is a variation in the seriousness of prognosis for the cancer patients coming to HOPE. It has been stated that members of the initial group had “terminal” cancer, in the sense that they had been told by their medical helpers that there were no more curative treatments available. While many newcomers to HOPE come at this very same point, now more come on the basis of an awareness that what HOPE offers might also be helpful in preventing recurrence of cancer. Bridget is a health care professional and knew of HOPE’s work before she got cancer. She also had cared for 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 that you could and I knew that I hadn’t done everything. I knew that they had done everything they could but now it was up to me. And, urn, I felt that I needed to come to HOPE for the support (L2, 240). .  .  .  .  .  .  Phyllis said when a medical person suggested she attend HOPE after her first diagnosis: “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 word of mouth promotion rather than on media advertising. This influences the  138 composition of the organization. It has probably also affected the number of members, a topic of discussion in the next section.  Inputs Like other organizations, self-help groups require certain inputs in order to maintain themselves. The most important inputs for self-help groups are new members, volunteer or “payback” work by senior members and money. Knowledge of the influence of these factors in the HOPE Cancer Health Centre enhances understanding of the organization.  Money For the majority of self-help groups, money is not a problem because iow overhead expenses allow them to function on limited budgets. This is not the case for HOPE. Barbara revealed: “Finances have always been difficult: just keeping ourselves 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 home on York Street to a “store front” location on West Broadway. This move was both challenging and rewarding. The leaders were sure that a larger and more accessible space would enhance the organization by attracting new members and would allow them to provide better services to all members. By choosing to have such a “centre,” they have a substantial monthly overhead.  139 Powell (1990) states that fee for service distinguishes the professional care giving system from most self-help groups which operate with no fee or a very small fee for members. HOPE began charging a fee for their introductory workshops in 1983 because leaders were using their own money for expenses. Charging fees has led to two types of negative responses. Some believe they should not have to pay because the leaders are not experts and others view it as a health 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, too because people say you know they don’t think they should pay for what we do. because people don’t see us as anything but people that have had cancer (Vi, 692). .  .  .  .  .  .  Even with the fees, the organization suffers financial constraints. Barbara describes the other sources of funding as: “Donations primarily. service clubs, from things such as the casinos.  .  .  .  support from  donations from individuals,  bequests and from businesses. Some of it is donations to do the workshops.” She said that also there “is an association with the United Way.  .  .  .  we do get some  funds if they are designated for HOPE” (V3, 95). HOPE has been significantly helped by the Fraternal Order of Eagles who now designate yearly funding specffically towards reducing the charge to members for the workshops. Other agencies that make specific contributions are the “Face the World Foundation” and the “John and Lotte Hecht Memorial Foundation.” These more dependable funding agencies have made a significant contribution to HOPE’s viability. The financial position is more stable now than ever; however, two problems have emerged. Maggie stated: “the one draw back is the financial that we have to  140 be concerned about financial affairs and that sort of stuff. We don’t put all our energy into the helping part” (V2, 530). The other problem is that the workshop fee may deter some cancer patients from joining despite the brochure stating that fees will be subsidized when necessary.  New Members As HOPE is shifting its focus from a support group to an educational program, a large, active membership is not as important. A problem will arise, however, if an active membership is not somehow maintained to fill future leadership positions. Maggie discusses the current situation: So I think the difficulty is getting people in the first, or has been, it’s becoming easier now, more people hear about us now from different agencies but when I first started it was the difficulty of getting the word out that there is something that you can do. One of the difficulties has been that we have to charge for our services because people have been brought up with the idea that medical illness is treated free cause of our medical system (V2, 98).  Veterans Generally self-help groups depend almost entirely on volunteer work by senior members to keep their organizations going. This work is termed “paybacks” (Powell, 1990, p. 43) and takes the form of office services such as publishing newsletters, coding library materials, preparing handout materials and making phone calls. Barbara reported: “We did rely a lot on volunteers and not a heck of a lot of that to start with. Of course it was a very informal kind of leadership with Claude and Moyra.  .  .  .  And then I think they began to draw on additional  141 leadership and help from people who came through HOPE themselves” (V3, 124). Maintenance of the organization through tough times was really dependent upon 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 our souls into it and also I see for myself, maybe not so much with the people that have come after Claude and I, we did in a sense sacrifice quite a lot to get 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 because this organization had to continue and this was really important” (V3, 506). As in many other self-help groups, the kind and number of activities that can 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 of the social and fun activities that he had attended, lamented the need for more workers: “It is just a shame that there aren’t more people on the HOPE staff so that they can plan more fun things.  .  .  .  But you have to have the bodies to  organize it. It is work and you need the bodies to do it” (L7, 498). Some self-help groups developed in size and formality to the degree where the programs are standardized and several franchises exist. Alcoholics Anonymous and Weight Watchers are two examples. Some out of town members of HOPE have participated in or led groups for cancer patients in their towns as a result of their involvement in HOPE. This aspect is included in a section called “Organization Design.” The next characteristic described is origin and sanction.  142 Origin and Sanction The origin of most self-help groups has been the indigenous people, those concerned with the problem. This is the case with HOPE. Claude Dosdall had been a cancer patient for four years prior to gathering together the other cancer patients for support. He tells of the beginning of HOPE in his book, My God I Thought You’d Died (Dosdall & Broatch, 1986). One of the things Carl Simonton had emphasized in the June 1980 seminar was that cancer patients need a support system, one made up of people other than family members. I had so often longed to share my experiences and compare notes and I needed more than my casual contacts in clinic waiting rooms. When I discovered to my surprise that there was no such group in Vancouver, I decided to start my own (p. 86). One of the significant ways that self-help organizations differ is in the kind and degree of affiliation or association with professionals or formal agencies. Borkman (1976) refers to groups of peers that are actually led by professionals as support groups, excluding them from the self-help group classification. However, many self-help groups are developed by an agency or establish some degree of affiliation with a professional or an agency. The CanSurmount groups that are sponsored by the American and Canadian Cancer Societies are examples. Such groups have the advantage of the sanction provided by professionals and established 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 affiliation with service clubs and other cancer groups has been considered but HOPE is currently an independent organization.  143 There are statements made by both Moyra and Claude about the lack of formal support from the Cancer Agency at the time of origin. Claude said: “The head of the B.C. Cancer Control Agency would not support a group whose aim was to 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 were one, that patients didn’t know what the hell they were doing and two, that it was not accepted that the person’s actions or thoughts or emotions had any impact on the outcome of cancer.  .  .  So it went against their policy” (Vi, 991).  Claude states that “a nurse at the Cancer Clinic who had taken the Simonton Therapist Training Program helped spread the word and was invaluable in starting and helping that first year.” (Dosdall & Broatch, 1986, p. 87). Moyra was told of the group by this same nurse and adds: “It was a very secretive ‘hush hush’ thing in those days.” She also elaborates that this nurse clearly took a background position: “It really was just a self-help group without any leadership really. Though this nurse that I mentioned before was supposedly the professional but she mostly listened. She didn’t interfere” (Vi, 76). This early wariness and lack of acceptance by the formal cancer agencies has 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 philosophy which you can get into remission and suppress cancer just by holistic healing.  .  .  Now doctors are becoming enlightened” (L7, 185,198). Barbara said this when asked about successes of this group: “The growing acceptance of our organization  144 and our services by professional organizations such as the health care organizations, social workers, nursing groups, even doctors. So that is one big measure of how I think we have succeeded” (V3, 80). At one time the leaders considered affiliating with the central agency providing support services to cancer patients. The advantage of such a move would have been twofold: stable financial support and an extension of the legitimacy of the central agency would have been available. The importance of autonomy is one reason identified in the literature for many self-help groups achieving or maintaining independence. Barbara answered a question about existing affiliations with funding agencies this way: No, none at all. It has been attempted in the past and it hasn’t really worked out. We think its important to keep our autonomy to, ah, in the past I think when we did make attempt to go under somebody else’s bigger umbrella, there seemed to be so many demands for change to conform to the bigger organization. We came to feel it wasn’t worth it for the financial support. Plus one of the things that I think makes it really appealing to people too is that we are an autonomous group. We are different from the cancer 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 remain autonomous--small and struggling, but unique (V3, 103). The notion of sanction or legitimacy extends beyond the issue of formal association with professionals or formal agencies to the web of relationships in the community. Now there are more cancer patients coming to HOPE by referral from health care professionals. That this is viewed as a success attests to the effort and conscientiousness of the HOPE staff to continually project a positive image of their work with cancer patients. Another factor that has significantly contributed to their acceptance as a legitimate organization is an overall increase in the  145 general acceptance of the ideas that HOPE has always espoused. It has been posited that self-help groups arise out of need of the members for 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 professional care. The degree of this variance is related to how much acceptance of the problem of concern and the methods of solving it are at variance from the view of the dominant culture. Acceptability of the teachings of HOPE are far more mainstream now than they were in 1980 when HOPE was founded. One of the greatest positive influences was the widespread popularity of the writings of Dr. Bernie Siegel (1986, 1989) and others, such as Dr. Jeanne Achterberg (1985) and Dr. Joan Borysenko (1987). It is believed these writings influenced cancer patients and health care professionals alike. Gradually, more programs have been developed within the formal institutions which reflect acceptance of the mind body connection and the value of self healing approaches. In 1988, classes and ongoing sessions of relaxation and healing meditation were introduced at the B.C. Cancer Agency. In fact, the person responsible for these classes attributes agency support for beginning them partly to similar services being offered in the community (by HOPE) and the reports that participants found them helpful (L. Smith, personal communication, April 4, 1994).  Control The existence of HOPE as an independent unaffiliated self-help organization  146 has already been established. Therefore, the control of activities is within the organization. HOPE is registered under the Societies Act of B.C. and this registration permits participation in certain fund raising activities and the distribution of tax deductible receipts for donations. For example, HOPE, as a registered charitable organization can participate in the B.C. Lottery sponsored casinos. In exchange for volunteer service on designated days of operation, organizations receive 50% of the profits for these evenings. This is usually a sizable 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 internal dynamics of the HOPE organization: the leadership style and input into the organization by the members.  Leadership It has been established that the leadership in this organization comes from within. Dynamics related to this, such as the give and take of roles in self-help groups, are evident. Another dimension of leadership in self-help groups is the personal commitment of the persons assuming these positions. Some of the dialogues collected support the presence of this dimension in the HOPE organization. The credit for the initial formation of the support group goes to Claude. In his book, Claude identified as a goal he set in 1977: “I want to work with people in a workshop setting” (1986, p. 25) and suggests that the movement of HOPE from a  147 small support group to an organization with programs was the realization of this goal. He writes that its work and growth had become his full time “occupation and pre-occupation” (p. 87). Although Claude and Moyra were co-leaders for several years, Claude was somehow identified by the members as the dominant leader. The decision making is largely controlled by the leaders. Both a Board and an advisory group exist and all their members have had an affiliation with HOPE.  Member Input Unfortunately the kinds and number of programs that HOPE is able to offer depends on the number of members that are able and choose to be involved. Key decisions 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 focus for this group, was the acceptance of one member’s proposal to lead a series of meetings on death and dying. There was initial resistance to this idea because it was 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 sessions on death and dying have been held. Another example of member input is a recent decision to have “drop-in” sessions because this member thought they had been valuable to her and she was now willing to help lead some sessions.  Organizational Design The organizational design does not clearly distinguish self-help groups from  148  other care giving systems because the degree of formality extends from very informal to very formal. As a rule, professional systems are formal and care giving by family and friends is by nature informal. A change over time in degree of formality and association with other agencies or professionals is consistent with self-help groups and HOPE exhibits several examples of ways that it has changed. Barbara suggests one such change: “We emphasize more education and more encouragement to self-help than to support group as such, like a peer support group” (V3, 17). Moyra states: “It has changed from being sort of an unstructured program, a drop-in program, to being what I see as a very structured program” (Vi, 111). HOPE as an organization consistently scrutinizes its purpose and its resources to determine what it can best achieve and how this can be done. The program changes and the increased membership have created other changes. Moyra states: “What has changed also is it has changed from a small sort of almost like a family group to more or less like an organization. So in a sense, 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 close relationship so even though our organization has got to be a more of a formal organization and more structured, we managed to keep that close, that closeness that was there at the very beginning. That is so important for us to see ourselves, first of all as needing and also being able to provide support for each other and I think that has been absolutely vital to keeping us as an organization and recognition that we really have to keep looking after ourselves and each other. I have never been in any other place that has provided that kind of recognition of our, both our personal and professional needs (V3, 301).  149 Moyra believes another change is that HOPE is more of a community organization: “I think it has grown into a community service or whatever and the self-help idea is still there but there is guidance to get to the point where people can help themselves”  (Vi,  156). Moyra no longer feels like “just a small little  cancer patient trying to change the world” (Vi, 176). Now as leader of an organization with a store front and a variety of services she feels like “we are just another part of the group” of a larger care giving system (Vi, 178). Some of the participants interviewed wished for the return of some activities that are no longer held. Bridget said: And I guess because the staff is small their work load is heavier and we have only had that one big retreat in Squamish. There wasn’t an interest after that. And I often wonder if that is because the monthly meetings stopped. Because you would get together, there would be the same, more or less the same people coming to the monthly meetings and so maybe when they stopped, people stopped it just changed. The whole structure of HOPE changed. The workshops have stayed the same but they used to have yoga classes here, and the drop-in evenings (L2, 651). .  .  .  When asked what had influenced the changes in the organization, Barbara identified three factors: the numbers of learners, the increased knowledge of the members and the growing expertise of the leaders. Sheer growth of the organization, the numbers of people that have come to HOPE. So we have had to formalize it more. We have had to develop more of an educational program, a more structured approach than was it originally when it started. I think that is one of the big reasons, the numbers of people. Also, I think is has been the growing expertise of the people in HOPE. In the people that run HOPE. As we have learned more and there has been, we learned more about communicating with people in groups. I think that it has helped to change it too to a more structured approach. Plus everyone has become more knowledgeable and sophisticated too and they are more knowledgeable (V3, 25, 45). .  .  .  150 Other Characteristics The action orientation of HOPE and the determination with which they have continued to achieve their purposes is also characteristic of self-help groups in general.  Developmental Stages or Life Cycle Various studies done on the life cycle of self-help groups have produced models of development of self-help groups. The first four stages in a model by Katz (1970) are origin, informal organization and emergence of leadership and the beginning of formal organization. At HOPE, all three of the current staff members spoke of a change to a more structured program and toward a more focused educational program rather than provision of mutual support. Also, a transition from having office space in Claude Dosdall’s home to having a store front office on West Broadway was a significant change. It signalled a commitment to provide ongoing service in the community. Katz (1970) suggests the beginnings of professionalism is a final stage for self-help groups and there is some indication of movement towards this. The current director, Moyra, just recently stated she would like to make some changes to further refine the education programming by developing packaged materials and 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 two steps in their model are formation of a general ideology and movement to an  151  expressive or political stage. In the section on purpose, it was concluded that HOPE’s central purpose has much more to do with helping members cope with the problem than with social activism. The need for social activism has lessened because of the greater acceptance in the general public and by health care professionals of the beliefs on which HOPE’s programs are based. In the beginning, this was not the case and the discrepancy was noticed on a personal as well as a global level. As Claude said: “My 1970 self would have looked at my present 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 at HOPE is to help people shift the responsibility for their health from the professional to themselves. Group members are told to become involved in the decision making for their treatment plans and care in order to regain a sense of control. Also, the values of the self-help approach are continually promoted to professional health care workers. HOPE’s leaders have the desire for services similar to theirs to be available to all cancer patients. This means they have tended to work carefully towards gaining acceptance from the health care community. Barbara spoke candidly of their desire to be accepted: One of the major drawbacks in the past is resistance from the medical establishment, our mainstream health outlook. In the past that was a real stumbling block and I guess we have always found it important in the past to be accepted by the establishment. The establishment doesn’t seem as important now but maybe it doesn’t seem as important because we in fact are more accepted (V3, 84).  152  Other advocacy work for cancer patients has been achieved by having members participate in panels at seminars, or in television and radio talk shows, speaking about their work with HOPE and telling their personal stories. Just recently five women with breast cancer participated in the filming of a documentary called Breast Cancer: Silence Broken.  Summary  Any attempt to summarize a detailed description is difficult and bound to be inadequate. The description of the characteristics of HOPE has demonstrated its uniqueness and underscore its identity as a self-help group. As a whole, they explain how HOPE presented itself as a self-help organization to fill a vacuum created by a paradigm shift from the pure medical model of treatment for cancer patients to a model of more holistic understanding of cancer of multifactorial causation and treatment. Certain characteristics warrant review. The central purpose of HOPE has been identified as offering help and encouragement to all cancer patients who wish to take an active part in their cancer treatment and recovery process. HOPE began as a mutual support group. It has evolved over time and the leaders have developed educational programs and are interested in providing more professional services. The mutual assistance aspect is still stressed although there are few ongoing support groups. Programs and activities are designed to foster interaction between cancer patients and to create an atmosphere where cancer patients can be comfortable  153 and begin to feel normal. Emphasis is placed on becoming knowledgable about cancer and cancer treatments and some special techniques for self-help are introduced in the sessions. Hope and a sense of control are considered to be helpful in the healing process and are emphasized in the programs. The knowledge base derived from the personal learnings of members of HOPE can be called its ideology. The ideology provides the frame of reference for the learning experiences of the members and it is integral to the changes that members experience. The learning experiences of the members of HOPE is the focus of the next chapter. Because of the importance of the ideology as the frame of reference for learning at HOPE the central beliefs are reiterated here. •  Human beings have personal resources for healing that can be accessed and stimulated.  •  Mind, body and spirit are dynamically interconnected and healing that happens in any domain affects the whole being.  •  Positive emotions support healing and the body is healthier when emotions of 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 hope and empowerment considered conducive to healing.  •  Causation of cancer disease is multifactorial therefore psychosocial and spiritual needs require the same attention as physical needs.  154 CHAPTER SIX LEARNING WITH PEERS  The focus of this chapter is the learning experiences of selected members of HOPE. The learners’ perspective has been taken; this revealed the multiple realities and subjectivity of learning within the context of a group. The data are rich in themselves. With the addition of interpretive commentary based on literature in adult learning, a meaningful and illuminative picture of the learning experiences of members of HOPE is provided. Four themes emerged from the data and will be used to establish a broad frame for organization of the material in this chapter. A large element of interest in self-help groups focuses on the outcomes achieved by members of self-help groups and the processes that effect these apparent changes. Also of interest is how the processes differentiate self-help groups as a care giving system from professional care and from care provided by families and friends is also of interest. The processes found to effect changes in self-help group members have previously been studied using concepts from psychology and sociology. Application of concepts from small group theory is one example (Blair, 1987; Levy, 1976; Lieberman, 1979). While useful, these analyses have tended to limit the explanation to the positive results of sharing experiences with like minded people, such as reducing anxiety and promoting more effective behavior. Some studies have identified other mechanisms of change in self-help groups. They are the experiential knowledge base (Borkman, 1976) and the  155 ideology of groups (Antze, 1976). Discussion of these propositions and the related concepts has been provided in Chapter Three. Educators have tended to show little interest in self-help groups because they seem to exist within the care giving system as opposed to the education system. However, there are many concepts and propositions in the literature on adult learning that appear to have potential for illuminating the elements considered to be key in the change mechanisms and processes studied in the literature on self-help groups. On this basis, adult learning was chosen as the central focus for exploring the experiences of members within the context of a particular self-help organization, i.e., that of HOPE. For this study, learning is defined as “the process of making a new or revised interpretation of the meaning of an experience which gives subsequent understanding, appreciation and action” (Mezirow, 1990, p. 1).  To help focus the  data collection and analysis, literature on adult learning which contained conceptual work on elements similar to concepts found in literature on change in self-help groups was selected. Three perspectives on adult learning were reviewed in Chapter Three. They will be reintroduced again following discussion of the organization of this chapter. It is noted that an in-depth analysis of the phenomenon of adults learning at HOPE Cancer Health Centre was not within the scope of this study nor were the data intended to validate the selected theoretical works on adult learning. Questions asked HOPE members were not so specific as to solicit responses that would tightly fit any one of the theoretical frameworks; rather open-ended  156 questions were used to encourage the participants to reveal their own perceptions of their learning experiences. As such, the data are in narrative form and not specific in a way that would validate specific concepts or relationships posited by a particular framework. Organization of the material in this chapter presented a challenge. Typically data on learning would be presented as processes and outcomes. This was attempted but was not effective for two reasons. First, the categories were too large and lacked definition. Second, the different perspectives on adult learning selected to provide interpretation overlap; meaning was lost when more than one perspective related to certain data. An effort to organize the material according to the theoretical writings created a different problem. It presumed that the data were meant to support or validate the concepts and propositions in the different perspectives on adult learning. However, the intention of this study was to gain understanding of the phenomenon 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 taken to some degree. During the process of moving back and forth between the perspectives on adult learning and the data, four themes emerged in a way that allows for predominate explanation by one of the three selected perspectives on adult learning: experiential, transformative and situated learning. The four themes are: the group’s ideology as a frame of reference to learning; personal and shared  157 experience as the test of knowledge; the power of the affective dimension of experience in learning; and the significant contributions of learning with peers as the context of learning.  Preview of the Four Themes Participants were asked what benefits they had received from being a member of HOPE and what they had learned. The questions asked emerged from the literature on self-help groups and on adult learning. Therefore, the themes that emerged from the data are closely related to the theoretical writings which present the perspectives of experiential learning, transformative learning and situated learning. To reiterate, the four themes are: the group’s ideology as a frame of reference to learning; personal and shared experience as the test of knowledge; the power of the affective dimension of experience in learning; and the significance of “learning with peers” as the context of learning. The first theme to emerge was that the learning was centrally connected to the ideology of HOPE. The ideology has been discussed in Chapter Five as the knowledge 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 demonstrated significant transformation of meaning perspectives and some related to expansion and integration of the new meaning once it has been adopted. Therefore, a framework of forms of learning provided by Mezirow (1991) that includes forms of transformative learning is used to organize the data and explain the data within  158 this theme. Processes related to transformative learning will be discussed briefly to expand the understanding of learning related learning connected to the ideology. The second theme which emerged is the experiential basis of knowledge in this learning context. The experiences of cancer as a disease and the new experiences related to learning are both known and transformed through personal lived experience. Thus, personal experience becomes a medium of learning and the test of knowledge. The accumulated wisdom of the group which is expressed as the group’s ideology is experientially based. It is passed on by the veterans or more experienced members and the knowledge is viewed as credible because it is their own, grounded by their own personal experiences. At first the beliefs may be taken on faith because they are attractive, but the new members then personalize and make them their own by grappling with the beliefs in the context of their own experience. Almost inseparable but worthy of separation for the purposes of discussion is the significance of the affective dimension in the learning experiences of the members of HOPE. The experience of cancer is profoundly emotionally laden and it follows that this dimension of learning emerge as integral and inseparable in the learning processes and in the products. In fact some feelings that surface as outcomes appear to be important as key elements in the process of learning. Hope, inspiration and sense of personal power are examples. The affective dimension of learning is given attention in all the selected conceptual frameworks and to the greatest degree in the literature on experiential learning.  159 The fourth theme is expressed as “being with peers” and encloses the processes of learning relating to the aspect of a self-help group as the context of learning. In all cases, this context of learning was valued mostly for the benefits of being with peers in the experiences of learning. Being together with like minded people is significantly beneficial in all the dimensions of learning: cognitive, affective, social and spiritual. The view of learning as being inseparable from the communities of practice in which learners participate is the perspective taken in the literature on situated learning. It provides the frame and the concepts to best consider and understand the significance of this aspect of the learning experiences of members of HOPE. The concepts developed in situated learning are also useful for consideration of the phenomenon of members shifting from newcomer to veteran in an organization like HOPE. The process is important for the maintenance of the organization 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 by members in the group. Lastly, self-help groups as learning communities are situated in a larger community of other service providers and implications of access to learning can be addressed within this theme. Before each theme is presented more fully, brief reviews of the theoretical perspectives are needed in order to emphasize the concepts considered to be most vital. It is believed that the data and the varied contributions of the writings on adult learning, in combination, provide an exciting and illuminating picture of adults learning within the context of a self-help group: adults learning with peers.  160 Three Perspectives of Adult Learning The initial search of literature on adult learning was directed by the key concepts of peer groups, experiential knowledge, ideology and transformation. The literature recognized as having explanatory power for these elements focuses on experiential learning, transformative learning and situated learning.  Perspective of Transformative Learning Transformative learning provides another perspective on adult learning. It describes a learning process that begins with a disorienting dilemma and involves acknowledgement and examination of the “cultural assumptions governing the rules, roles, conventions and social expectations which dictate the way we see, think, feel and act” (Mezirow, 1981, p. 11). Through activities that involve critical dialogue and critical reflection, meaning perspectives are reformulated to allow a more discriminating and inclusive understanding of one’s experience. This usually results in new attitudes and behaviors. Transformative learning concepts have value for this study because they provide a frame for viewing the learning experiences 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 of perspective transformation. The steps are alienation, reframing and contractual solidarity. In her model of transformative learning, Taylor (1989) delineates three very similar phases and names them: generation, transformation and integration. Some details of the steps in this process have been presented in the literature review in Chapter Three.  161 There are references in this set of literature to learning in groups and Mezirow contends that consensual validation of what is asserted is essential when there are no empirical tests of truth available (1990, p. 11). This is achieved through critical dialogue. It is noted that experience itself is not emphasized as a test of knowledge and, as has been suggested, the profound role of experience as the medium for the learning of members of HOPE requires consideration. The model of transformative learning also develops the concepts of critical reflection and critical self-reflection as central processes. Mezirow considers reference groups as an essential way of fostering these processes. He sees these advantages: Role modelling, uncritical group support and solidarity; helping learners to link self-insights with internalized social norms and to understand that others share their dilemma; and providing a secure environment that fosters the trust necessary for critical self-examination and the expression of feelings (Mezirow & Associates, 1990, p. 360). Another contribution from this set of literature is a frame provided by Mezirow (1991) of four forms of adult learning. This frame was not discussed in the original review of literature. The relevancy of literature is not always evident prior to the actual research but it has become apparent that this frame has power to organize the learning outcomes in a meaningful way. The four forms of learning will be described in a later section alongside the data.  Perspective of Experiential Learning The literature on experiential learning was selected for review because of the attention to experiential knowledge in literature on self-help groups (Borkman,  162 1976; Maton, 1989; Powell, 1990). In discussions of self-help groups the experiential knowledge that is recognized as characteristic of self-help groups is practical “how-to” knowledge developed from a trial and error process when dealing with the problems of concern (Borkman, 1976). Review of the literature on experiential learning revealed that experiential knowledge can also be propositional in nature. In this case, learning involves integrating personal or vicarious experience into a frame of propositional knowledge in a way that personalizes it and makes it true. Examples of both practical and propositional knowledge 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 concepts and generalizations, and testing implications of concepts in new situations (Kolb & Fry, 1975). Detailed attention will not be given to each step, but reflection in the learning process and attention to the affective dimensions of learning as emphasized by Boud, Keough and Walker (1985) is important. They provide a model that illustrates the relationships they view as integral to experiential learning. It is shown in Figure 3.  Figure 3: The reflection process in context.  Experience(s)  Reflective processes  163  Outcomes  Source: Boud, Walker & Keough, 1985, P. 36. The sharing of knowledge by peers is rarely refer red to in this body of literature except for a few references to the valu e of peer groups in the stage of reflection. Boud, Keough and Walker (1985) note d that reflection can be enhanced by “comparing notes, roundtable discussions, and informal group discussion” (1985, p.8). They emphasize the critical importanc e of reflection to personalize and transform experience into knowledge and note that it may take place in association with others or in isolation. Boud, Keough and Walker (1985) clearly emphasiz e the affective dimension of learning. They view the emotional response of the learner to be critical: Depending on the circumstances and our inten tions we need either to work with our emotional response, find ways of setti ng them aside, or if they are positive ones retaining and enhancing them. If they do form barriers, these  164 need to be recognized as such and removed before the learning process can proceed (1985, p. 29). The members of HOPE placed high value on learning with people who understood precisely what they were going through emotionally. Therefore, attention to the affective dimension in the learning process is significant.  Perspective of Situated Learning The notion of others learning from expert peers is best addressed in Lave and Wenger’s work entitled Situated Learning: Legitimate Peripheral Participation (1991). In their view, learning occurs through participation in a sociocultural community which is dynamic and ongoing. This notion is underpinned by the belief that knowledge is socially constructed. Therefore, both the community of practice and the larger community change as a result of the participation of the members. The concept “legitimate peripheral participation” designates a participation in a social practice which includes characteristics of legitimacy, accessibility and movement.  Participants move from a peripheral position to a central one as they  change through acquisition of new knowledgeable skills. This picture appears to be congruent with that of self-help groups where individuals not only learn, but become “teachers” as their proficiency in the practice of “helping yourself’ brings them successful outcomes and they begin to have more confidence in their own experiential knowledge base. Also, the notion of learning as both the cause and effect of practice (Lave and Wenger, 1991) creates a fluid and dynamic picture of  165 this process: one which appears to fit with the learning of members within selfhelp groups. Part of the work of Lave and Wenger (1991) builds on a concept first developed by Vygotsky (1978). Zone of proximal development is defined as: “the distance between the actual developmental level as determined by independent problem solving and the level of potential development as determined through problem solving under adult guidance or in collaboration with more capable peers” (Vygotsky, 1978, p. 86). It places value on interaction between peers in the learning process. Ability to learn is not wholly defined by what an individual already 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 and interpret the data. Four themes emerged from the data but because the theoretical perspectives overlap in some areas, the themes are not discreet in the sense of being tied to only one.  The following sections attempt to provide an  understanding of adults learning with peers in the context of a self-help group.  Ideology as the Frame of Reference for Learning The ideology, or set of teachings of a self-help group, has been suggested to be 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 pathway offered by professionals as to how change can occur and what about the affliction  166 needs to be redefined” (Lieberman, 1979, P. 218). References to transformation and redefinition in the literature on self-help prompted interest in a possible link to 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 in Chapter Five. The ideology is based on two central elements about cancer and cancer care.  The first is that cancer as a disease is not always fatal even when  medical treatments been exhausted. The second element is that there are a lot of ways to promote healing that a person can independently and interdependently participate in. Summarized as “self as participant in healer,” the ideology provides 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 own power, their own ability to take charge again. They realize that they don’t have to be helpless and hopeless victims. They can become informed consumers. They can become more knowledgeable about themselves, about their needs, and can express what those needs are, what those wants are, perhaps more effectively to their loved ones, to their helpers, to their health care providers (V3, 236). In the early 1980s when HOPE was founded, these ideas were clearly contrary 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 model which emphasizes physical and chemical interventions aimed at treating the physical manifestations of the disease. Power is attributed to and assumed by the medical community for their “expert” scientific knowledge. Data support transformative learning which is defined as “the process of learning through critical self-reflection, which results in the reformulation of a  167 meaning perspective to allow a more inclusive, discriminating, and integrative understanding of one’s experience” (Mezirow & Associates, 1990, p. xv). The “learning includes acting on these insights” (p. xv). The data also suggest that self-help groups help members to proceed to action. In the discussion of the forms of learning, Mezirow utilizes terms that are specific 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 of sets 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 a frame 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 although my knowledge of the relative significance of some outcomes had prompted the inclusion of the research question “What if any, are the significant changes that members say are a result of participation in HOPE?” The data demonstrate that members of HOPE did make significant changes and many were related to a shift in their perspective or redefinition of certain ways of experiencing and living with cancer that were in alignment with the ideology of HOPE. As meaning perspectives are formulated through socialization, members coming to HOPE have a variety of original stances.  Jarvis (1987b) suggests that  168 for some individuals the discontinuity between their current stock of knowledge and what is presented in the socio-cultural milieu may be too great for them to have meaningful learning. Occasionally individuals come to HOPE workshops and leave for this reason. For other members, there is variance in the degree to which they transformed their perspectives; for some the ideology was entirely new and for 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 members struggle more than others to adopt the new beliefs to the extent that they guide their action. Mezirow (1991) suggests a frame of four forms of learning that places perspective transformation at one end of a continuum. The data have been organized within this framework for the purposes of clarity and discussion. It is noted that designation of the data to categories is somewhat arbitrary since specificity was not sought in the data collection.  Sections which focus on a form  of learning are introduced with a brief definition of that particular form.  Four Forms of Learning The first form is defined as “learning through meaning schemes” and represents learning within our acquired meaning schemes, or differentiating and elaborating meaning schemes (p. 92). The second form, entitled “learning new meaning schemes” involves creating new meaning schemes within already accepted meaning perspectives (p. 92). It does not negate existing meaning perspectives. The beginning of questioning of assumptions as being inadequate to  169 a current way of functioning is the focus of the third form called “learning through transformation of meaning schemes” (p. 93). Transformation of meaning schemes is classed as a type of transformative learning along with the fourth form which is “learning through perspective transformation,” the essential focus of the work of Mezirow (p. 93). The general focus in this section is learning outcomes; the data relating to outcomes are presented within the frame of four forms of learning. The data would fit into the frame tidily only if the concepts had been used in a more focused way to design the data collection. Instead, the frame is used to organize the data as it fits best in order to demonstrate the differences and diversity of the learning outcomes and their relatedness to the ideology of HOPE. As well, it highlights the evidence of transformative learning. In order to more fully understand perspective transformation and its application to learning in self-help groups, a discussion of some of the process elements of perspective transformation follows the sections on different forms of learning.  Learning within Meaning Schemes The learning that Mezirow calls the first form produces outcomes within the structure of existing meaning schemes. Many of the outcomes achieved by members of HOPE are related to changes made as a result of their adoption or increased commitment to the perspective of “self as a participant in healing.” Examples of these outcomes, such as lifestyle changes, are included in this section.  170 The amount of stress in her job was a concern for Barb P. and she explained overcoming it: When I wasn’t working I was doing my relaxation, now if there is a day at work that I am feeling particularly stressed out I’ll go out in my car and if I’m out doing my visits I’ll stop at the front of the road or stay in my car in the garage for 15 minutes--I’ll close my eyes and I’ll just do my relaxation for 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 changed my diet drastically from being a meat eater. to being a vegan vegetarian. I have always known that exercise was important but I didn’t really know about the effects of exercise on the immune system. So I have learned the importance of that. That’s very important to me. And certainly I have learned 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 in that I am stressed (L2 482). .  .  Jane also experienced many changes as a result of what she first learned. She stated: I try to do far more for myself now than I used to. My diet, I changed my diet. I am far more aware now of what I eat. And exercise now I would rather be outside walking and connecting with nature and that is more important to me (L8-123). .  .  .  .  .  .  Like many cancer patients at HOPE, Jim became aware of the frequency of recurrence of cancer even after “successful” treatments. He stated: One thing I picked up right away from Claude was maybe you are in remission but don’t throw away your crutches and yell “Hallelujah, I’m healed” because 80% of the people with cancer have a recurrence. So the important thing is to build up your natural defences. And that is really what I have worked on ever since my first HOPE workshop is to try and build up my natural defences both through attitude and exercise. Hiking and this sort of thing, cutting fire wood (L7, 121).  171  Jim also stated he listened to a number of stories of persons that had not been diagnosed when they first had symptoms or had waited to seek help for some period of time. From this he learned that: You take charge of your own treatment- -you don’t wait until the doctor says I think you better have a bone scan, or I think maybe we better check that And I think it is important that you be aggressive with your out. treatment. I take every test that I can to keep monitoring, to keep on top of it and then if anything does start to act up, nip it in the bud (L7, 430). .  .  .  .  .  .  Exyanding Meaning Schemes In expanding meaning schemes, Mezirow speaks of “creating meanings that are sufficiently consistent and compatible with existing meaning perspectives” (1991, p. 93). In other words, expansion and elaboration are within the existing meaning perspective but some beliefs or attitudes may be changes. It must be remembered that for some members, learning of this nature occurs after a major transformation of perspective. For Phyllis, it appears that her learning was more a 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 of things you did know but in a wonderful way. Ala, the people who lead, are the leaders of HOPE, are inspirational really” (Lii, 150). While Glenda was telling about her experience of the introductory workshop she asked if Claude had talked about “the gift of cancer” in the introductory workshop that I attended. When I said that he hadn’t, she told me about her experience.  172 Also, one of the things I loved about the HOPE centre is writing down the gifts that cancer has given me. And first you think “This is nuts, what kind of gifts can you get?” and then when you start writing and you write and you write and you write and you think “Man I am a way better person for having had cancer than I ever could have been before!” Then what Claude did that I just loved too was he said “Now I want you to thank the cancer very much for coming and giving you these wonderful gifts. Keep the gifts that 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 can keep all those benefits that cancer has given you and not have the cancer because now you are aware, because now you know what you needed to learn from the cancer.” And it just made so much sense that of course life is 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 of previous beliefs: “I do have that belief, a very strong belief that this is our learning ground. This is when we are in flesh form and we can make choices that your spirit grows in this life and that is what it is all about is getting the spirit to soar” (L9, 519). Barb P. talked about extending knowledge she used in her nursing practice and applying it to herself. I have always thought of the type of nursing I do as [an] holistic type of thing 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 family connections, 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’t have any reason to until I got sick. And then the more I read about it and came 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 of personal thought to it. So certainly that helped and it made me realize how important that you have to have it. Because you are sort of on a roller coaster all the time, up and down and you have to have that emotional support (L4, 249).  173 Changing Meaning Schemes Another form of adult learning identified by Mezirow (1991) and classed as transformative learning involves the transformation of meaning schemes that are found to be no longer adequate for understanding one’s experience. Jim, who had stated that when he was first diagnosed he “didn’t want anyone to know he had this horrible disease,” said: After I got to know all these cancer patients and saw what exceptional people they were, especially the long term survivors, I was kind of proud to be part of the community. It changed my attitude completely. I was quite happy to talk about it, about cancer (L7, 76). Jim was already familiar with the notion of helping yourself and had changed his lifestyle around diet and stress management. At HOPE he changed his attitude about expressing emotions. He stated: Well, I guess one of the things that I have learned from them is it doesn’t do you any darn good at all to choke down your emotions and I guess this came out a bit at Cortez and at the workshops. Let it all hang out. If you feel good express it and if you feel really sad it’s okay and if you want to cry and even if it is a man, cry. Get rid of it, let it come out. And I think that is important not to suppress emotions when you are dealing with cancer (L7, 158). Changes viewed as significant to members tended to be personal. Bridget made changes in relation to her role in her family and her ability to express her needs. I have learned to ask for my needs to be met and that is probably the biggest thing that I got out of the HOPE workshop. Now I go off on our weekend retreats. The old me, prior to my diagnosis, would never have considered that my family could survive without me for a weekend. And I never actually even saw the need. And now I often, oh, I just love to get away on my own for the weekend. So that is a big change for me. But definitely 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).  174 Perspective Transformation The process of perspective transformation ends with the integration of a new perspective which will allow “a more inclusive and discriminating integration of experience” and more meaningful actions (Mezirow, 1981, p. 6-7). This form of learning is viewed as transformative and usually results in major changes in thinking, feelings and actions. The following examples of dialogue from conversations with members of HOPE, point to some aspect of this kind of transformation. It is interesting to note that feeling outcomes, such as hope and confidence, are often included along with the references to new ways of thinking or like phrases. Alex suggests adoption of a new perspective and relates several smaller changes related it: That changed my life, that whole weekend--really, it changed both of us. It was just--I was almost euphoric for the rest of the week and I did change. I changed everything. I changed my diet, I stopped eating meat, got on a vitamin program. I tried to eat natural health foods and it wasn’t always easy but I did okay. And I got a hold of a psychiatrist and I did a lot of changes. 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 kept everything 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 her cancer 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 I could fight back. I felt really hopeless so when they showed you the visualization, the meditation and how to turn it around at night instead of the defeating self talk to positive talk--well--I was so excited (L9, 138).  175 In this passage she extols the changes she has made: It all made so much sense, it was just like opening a door. “Yeh, this is where I belong, of course.” It was almost like I knew that if I had a choice now to go back and have my leg back and not know what I know, I would not do it. I would say, “Un uh, it’s just not worth it,” I would much rather have the knowledge then the leg--so, yeh, HOPE opened a whole vista for me; just unbelievable! The fact that I ski better on one leg than I ever did on two and just things like ah, that I do volunteer work at schools. I go into the schools. I just finished a whole week at a high school and talking to students there about smoking and cancer and it is just so neat and be able to reach out and effect changes and people will come up to me and say “You know Mrs. S., I’m still not smoking!” It’s so neat--I just love it and I go to the little wee kids, right from kindergarten. I start with the positive self talk 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 do kindergarten to seniors. And then I go in and I talk to different senior centres, lodges and things like that and women’s groups and they will phone and say “We sure would like a guest speaker today,” and “Yep, you got it. I will be there.” It is really neat. I feel so passionately about this sort of thing 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 one and it left him with little use of his body from the waist down. After he received a diagnosis of brain cancer he decided to join HOPE. He first said he had been a little 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). He  talked about changes he made in the way he was living with his disability as a result of his rethinking his life situation: So, I became a little more at ease with my disability. Whereas, before for me there was fighting it a little bit, still wanting to disregard it as much as possible. An example there was a wheelchair. My mother has been preaching for years that I should get a wheel chair because I could probably do a lot more things maybe get into some sports and stuff like that. I thought no way that is a step backwards getting into a wheel chair, .  .  .  .  .  .  176 forget it. And I thought that and all of a sudden after I have been through this I thought “Well, yeh, I will try it. Holy smokes, this is excellent. I should have done this years ago.” I am not in it full time by any means but I can just get around a whole lot better. I can go over to the malls and stuff like that, wander around. Before it was just too hard and now it is a piece of cake and a lot of stuff, I almost use it like a bike. You go out for a bike ride, I go out for a wheel and I am wanting to get into sports now. I want to be Pursuing getting into basketball and all kinds of things. able to ski, I want to do basketball, I want to do tennis so I have all these goals now in sports because I am a sports fan and my family is quite athletic but I have always been on the side lines and never been able to do anything. 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 some changed attitudes towards my life as well. So it was a real learning experience as far as that goes. I have never been one to be able to have any major goals or careers so I have just been floating around most of my life and not really too much direction and just kind of said “You have to get with 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. I went there and came out a different person, because for some reason that I got so much out of it. Just what I needed and the whole was for me. thing has changed my ways of thinking. You know I realized then that I had to do things for myself as well and not just sit back and think “Oh, it is not 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 receiving the help of professional health care providers or traditional medicine. As Moyra said: “It wasn’t like we were disregarding the medical, it was like trying to go beyond 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. It helps to share and there are actual techniques the importance of a healthy -  177 lifestyle and reducing stress and techniques to reduce stress. The sharing experiences and knowledge can be very beneficial (Li, 192). She also said: I am a I actually have never really discussed what I do with my doctor. vegetarian and she (doctor) knows that I have done lots of things but we have never taken the time to discuss it. The only thing, I feel like I am on top of it more, more in control. I changed doctors when I started to feel more confident and when I started to feel better. (Li, 81). ..  .  .  .  At the same time, “self as participant in healing” is a strongly held message and the relationships between members and their doctors, who usually have the authority in health care decisions, often shift. Commenting on her current relationship with her physician Jane stated that she had changed: I learned to speak up more now and realize that we should get more involved in our care and what kind of questions we ask. When I think back now how I was when I was diagnosed I just sat there and everything they said was “it” and I never questioned anything. So, yes it has changed, I am more assertive (L8, 225). Bridget reported this outcome: I have learned about using alternatives like naturopaths. And I never, I guess with my nursing background, I never would have thought of going to a naturopath before. I have learned to go look for things. Like my GP when I was first diagnosed wasn’t open to anything other than the conventional treatment. Anything I would ask him, his pat phrase was “Nothing proven--no statistics.” So the old me, tied to my diagnosis, would have left it at that. But the new me, because he wouldn’t give me what I wanted, I went to another doctor. I didn’t change my GP, I stayed with him because I like him and I had a good relationship with him but I went to actually--Claude’s doctor (L2, 456). .  .  .  .  .  .  It is important to note that members may have had experiences of all four forms of learning. They come to the self-help group for different reasons and with different meaning perspectives. An example of this is provided by Marilyn: “1  178 started reading Siegel and Simonton and I tried to do meditation and I felt I needed some instruction on how to do it. I needed some help so that’s when I decided [to join HOPE]” (Li, 23). The data relating to outcomes have been organized into the forms of learning provided by Mezirow (1991). Because the learning is so connected with experience the data could also be explained by models of experiential learning. The importance of experience in relation to the learning of members of HOPE will be discussed within the next theme. But first, the process of transformative learning will be used as a frame to present some data focused on processes.  The Process of Perspective Transformation The process of perspective transformation has been a focus of study for several years; Mezirow first proposed it in 1978. The recent publication of two texts 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. In relation to the data collected, the two elements of the process which appear to be most relevant will be discussed. Disorienting dilemma is the most common “first step” in the process and critical reflection and critical dialogue are key elements throughout the learning process.  179 Disorienting Dilemma Alienation is the first phase of perspective transformation. A disorienting dilemma or trigger event results in a disruption in meaning resulting in an alienation which demands attention and creates a potential for learning. These excerpts of dialogue can be understood as examples of the disruption that can occur 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 life and not make any changes because I felt sure that, urn, if I didn’t, a few years down the road, because I had seen it happen so many times- -people are 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 a recurrence (L2, 264). Glenda expressed her dilemma like this: Listen, I know I look alright and I know I feel okay and everything but during the day I put on this brave front but at night every time the lights go off I lie there in bed awake all night thinking “I’m dying, I’m dying, I’m dying” and the morning the light goes on and “I’m alive, I’m alive, I’m alive.” 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 greater probability for inducing change (Mezirow, 1981), there may be a critical upper limit to the amount of dissonance that can promote learning (Jarvis, 1987). Some individuals handle distress with denial or other psychological defense mechanisms. Belonging to a peer group can benefit individuals in distress in two major ways: by helping the person reduce the stress through understanding and emotional support and by providing solutions to the problem of concern.  180 Peer Group as Reference Group Critical reflection is identified as an integral activity in the learning process because it is key to the person acknowledging the dissonance between current meaning perspectives or schemes and actual experience. Critical reflection is used later to help integrate the new meaning perspectives. It has been suggested that the activities of critical reflection and critical dialogue are fostered within a reference 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 is interactive and reflection is enhanced by the sharing and generating of meaning with others. Mezirow suggests the following ingredients to foster critical reflection: Role modelling, uncritical group support and solidarity; helping learners to link self-insights with internalized social norms and to understand that others share their dilemma; and providing a secure environment that fosters the trust necessary for critical self-examination and the expression of feelings (Mezirow & Associates, 1990, p. 360). Responses that included “thinking” covered a variety of topics.  Marilyn  said: “I don’t think in my busy life I had stopped to think ‘What was I doing?’ I had 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 my life. 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 things differently. I thought about my married life where there have been lots of problems, 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 never get away from it. So in that way I tried to take a look at where I was and what I was doing with my life and I try and do far more for myself now than I used to (L8, 85). •  .  .  In the context of a self-help group, the group is also the medium for presentation of the new perspectives needed to reframe the experience. Mezirow contends that consensual validation of what is asserted is essential when there are no empirical tests of truth available (1990, p. 11). Study of the data reveals that for members of HOPE, knowledge is grounded and owned through personal experience. Recognition of experience as the medium of learning and the test of knowledge is an important insight.  Experience as the Condition of Knowledge Knowledge is defined as “the certainty that phenomena are real and that they possess certain characteristics” (Berger & Luckmann, 1967, p. 1). Information is not recognized as knowledge unless it has meaning and is verifiable. There are three conditions or tests for knowledge: experience, experiment and logic (Scheffler (1965) cited in Jarvis, 1988). It appears that the members of HOPE may, at first, take beliefs in the ideology as rational knowledge, but they continually use their own lived experiences and the experiences of trusted others to verify the beliefs. They also build, both individually and collectively, a body of experiential knowledge of a practical nature. This knowledge 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 HOPE  is one of personal confirmation based on their lived, “mo ment-to-moment”  182  experiences. Other writers (Boud, Keough & Walker, 1985; Burnard, 1988; Heron, 1981) agree that experiential knowledge can become propositional knowledge. It emerges from the process of reflecting on and integrating experiences with the beliefs initially taken as rational. The members also exchange very practical informati on about dealing with the problems and concerns related to cancer. This know ledge is viewed as practical “how-to” by Borkman (1976) and is the basis of her proposal of experiential knowledge as the knowledge base of selfhelp groups. She has used this quality of the knowledge base of self-help groups to distinguish their provision of care from professional care and informal care. This kind of practical knowledge which is learned from experience by a trial and error process is also evident in the data. These kinds of knowledge; “how-to” and propositi onal are qualitatively different but can both be classed as experiential know ledge because of the immediacy of the experience that is part of the learning process. The learnings of the members of HOPE centres on cancer. It is focus of their concern and is often in the forefront of their experiences. Julia said “we are just human beings, we cannot stay together abou t the whole cancer business. It has always been in the back of my mind” (L6, 415) . Participation in the self-help group is the medium of learning. The peer group members share their experiential knowledg e and help others learn by creating vicarious experiences they can identify with . The level of trust in the  183 group is enhanced because of the common bond that grows out of the commonalities of experience. The data in this section is organized to emphasize certain aspects of experiential knowledge. They are: experience recognized as conferring authority, reflection on ideas in the context of experience and propositional knowledge and practical knowledge. The latter two are varieties of knowledge that can also be experiential.  Experience as Authority David provided some dialogue about connecting with members in the group in a way that made their knowledge believable. They all give examples of what they have been through. So first of all it gives you the feelings that you are in the same boat or you were, the same level. So right away you are not listening to someone who has some information 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 hand knowledge, the pain and all that stuff and you are just on equal footing. It is just like a friend or family member that you are confiding in and so you tend to believe that it is true a lot more than otherwise. That’s what, I guess 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 and being with some people who were very knowledgeable of techniques to deal with it and who had been there, that whole experience just gave me the confidence and the drive to carry on. [The learning is different] because it 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 out feeling fantastic after he had gone through the detox[ification]” (L2, 177).  184 Reflection on Experience Reflection on experience is a key step in the process of “experiential learning” as it is defined by Kolb (1984) and several others (Boud, Walker & Keough, 1985; Boyd & Fales, 1983; and Keeton and Tate, 1978). Barb P. talked about the process of evaluating the experiences of others and integrating only some into her own frame of reference. The outcome of this experience is a realization 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 of strange because of my medical background. “What is this?” But the more I listened to people talking and I started to think, well you know, “Oh, okay, There were certain things I maybe I could try some of these things.” accepted and certain things that I couldn’t. And I thought, “That’s fine, I am making the choice.” And this is where I started to feel that I could do something about it because I had some control, I was able to make some of the choices as to what happened. I think I heard all the things other people had tried, I sort of gathered all this information and then I chose what I felt was right for me and that is what I tell people now. I say, “Find out what is out there and you choose what you feel comfortable with.” Not everybody feels comfortable with the same thing and you have to make that decision (L4, 95). .  .  .  Part of the process of developing experiential knowledge is reflection on experience. Reflection involves exploring, mulling over and evaluating experience in order to lead to new appreciations and understandings (Boud, Walker & Keough, 1985). It is needed to integrate the experience with other knowledge and give meaning to the experience. It is always in relation to self. In the workshop setting, members are asked to think about their beliefs and their experiences, for example, to identify the stressors in their lives. Members are also encouraged to pay attention to inner experiences such as body sensations and to learn ways to better access information in the unconscious, such as keeping  185 journals of dreams or feelings and practicing meditation. Alex has had time to reflect on her experiences and now says this: Well, I feel that if I had listened to myself maybe I would have insisted that they take that lump off that they didn’t. Because I kept having dreams and I have had lumps in the past but I never had dreamt about it so I think that I should follow my own intuition (L3, 201). In the next passage, David is talking about a physical manifestation that assisted him in believing in the power of visualization. There was a example of using visualization, too. I’m not exactly sure what it was, something about thinking of your radiation as a gun or something shooting bullets at your tumour and you would visualize the bullets shredding up the tumour tissues and getting rid of that or something close to it. So I did that one day on the table during my radiation and imagined that was what was happening and I imagined that for the length of time the radiation was on- -and it had a buzz so you knew when it was on and you knew when it was off--so all the time, I think it was for 20 or 30 seconds. So all the time it was on I imagined it was shooting particles into my tumour and it was destroying it and it was kind of a powerful thing because I kind of went away from it believing that it actually had. I did feel differently. 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 some radiation treatment for bone metastases from breast cancer that had been diagnosed and treated two years earlier. She began by saying: “I had a lot of treatment and nothing seemed to be working” (Li, 19). She stated that as result a of attending a workshop: I had the attitude from HOPE that I could take control. I started to change other things in my life. I was going to be teaching half time and I felt, “No I wouldn’t take it (chemotherapy) in August” and then in September when it was again scheduled I thought “No I’m not going to take it, I’m going to get better.” 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 droppe d a little bit and then by December it was inactive and in the normal range so  186 I never did have the chemotherapy. But I felt that I had decided when I was getting better and know now I can tell when I am well and when something is wrong (Li, 57).  It appears that Marilyn had validated her inner experience with the tests provided by the cancer agency. By using these various ways of connecting with their experiences, members generate personalized knowledge. There is some data that relates to the two kinds of experiential knowledge: propositional knowledge and practical knowledge.  Proyositional Knowledge Glenda related an example of a way that propositional knowledge, in this case “positive thinking helps the healing process,” can be grounded with experience. A lecture on positive thinking is really not much. It doesn’t have a lot of effect if they haven’t had cancer because you can talk all you want about positive thinking but if you don’t know how to focus it to your own fears it is not going to work. Positive thinking “I am going to have a good day today” but you have the pain to deal with, you have got obviously a lower level 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 with cancer patients- Claude was able to bring that out that- -your needs are different 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 she already had. I learned a lot about new age medicine and the more I know about it, the more I know that it is old and I am happy to see that it is now being incorporated into medicine, western medicine more and more. Because I really believe that there is a lot to it. But I guess it took a personal experience to realize the importance of it (L4, 349).  187 Jim provided another example of taking the ideas of others and learning by applying them himself. After reflecting on the experience Jim is able to claim the knowledge as his own and use it confidently in the future. His own experience of grieving in a new way has personalized and grounded the idea of not suppressing emotions. He says this: I guess one of the things that I have learned from them is it doesn’t do you any darn good at all to choke down your emotions and I guess this came out a bit at Cortez and at the workshops. Let it all hang out. If you feel good express it and if you feel really sad it’s okay and if you want to cry and even if it is a man, cry. Get rid of it, let it come out. And I think that is important not to suppress emotions when you are dealing with cancer (L7, 158). His knowledge of the value of expressing emotion is no longer propositional, based on what he has heard from others. It is now based on his own experience at Cortez and a later experience when his dog died. He said, “I would have gladly cried all over the place when I lost my little dog but I really grieved for about three days. It took me a while to get over it. And that’s it, if you don’t then it hangs on for months” (L7, 169).  Practical Knowledge There are also examples of the development of practical know-how knowledge which include references to experience as part of the learning. The following example is an excerpt from the HOPE newsletter (Summer 1993) written by 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 be  188 driven 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, it would be delayed by one week. The pharmacy supplied me with Gravol and I tried to relax in the waiting room using progressive relaxation techniques. After treatment I became quite nauseated and when I reached home, had to take additional Gravol and go to bed. For the second treatment I was prepared. I put on my sea-sickness wristbands, took a Gravol, took my Walkman with relaxing music and had my son drive me to the CCABC. I did not feel any side effects. I listened to my music in the waiting room as well as in the treatment room during radiation. I felt quite relaxed and welcomed my treatment. There was no nausea and no need for additional Gravol. For the third and fourth treatments I eliminated the Gravol but did everything else the same. Again, no nausea! (HOPE newsletter, Summer 1993). She concludes by saying “I hope that by sharing my story, others will be encouraged to prepare for their treatments so that side effects wifi be minimized” (HOPE newsletter, Summer 1993). Donna has continually danced between her own experience and the prior knowledge of radiation side effects. The trial and error approach worked well for her and she is now willing to share her experience with others through the newsletter. Claude, who was the first proponent of many of the beliefs that have become HOPE’s ideology, has stated clearly that he “knows” certain things from doing or experiencing in certain ways things he had heard about. An example is provided in his book. From my reading, my personal experience, and the members [of HOPE], I am convinced that the radiation worked for me because I was physically, mentally, and emotionally ready; that I had strengthened myself in every possible way. For my body I had added extra vitamin C because of the extra stress of the radiation. I was especially ready mentally, and as well as the regular visualizations that I did three times a day, I had devised one to use during actual treatment. When my blood count went .  .  .  .  .  .  .  .  .  189 down, I visualized my bone marrow as a huge factory turning out billions of white blood cells. With the help of a local doctor and a biofeedback machine, 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 the development of experiential knowledge and exposure to knowledge from sources that had not been helpful with the problem of concern. For cancer patients this means that the authority for knowledge may no longer remain with professional health care workers. Alex describes what has changed in her relationship with doctors: Not the way I really relate to them [doctors] but the way I hear them. You know 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 is better for me (L3, 185). Authority and credibility of knowledge is attributed to those who share the experience of cancer rather than those who have “expertise.” This does not mean that professional information is discounted. It is, however, taken in a different perspective. It is evident that experience is a key element in the learning experiences of members of HOPE. Members use their experience to both generate practical knowledge and confirm propositional knowledge. Their experience is also the basis of their connection with other group members. After a level of trust is established, their own experience is extended by the experiences of members in the group. Others’ experiences in the groups are viewed as credible because of the shared experience of cancer and not because of “expertise” about cancer. The  190 knowledge of others has credibifity based on commonalities of the experience of cancer. It is personalized and owned when grounded by one’s own experience. There is another important element of learning that is generated from the experience 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 been momentarily separated in order to highlight the significance of this element in the learning experiences of members of HOPE.  The Affective Dimension of Learning The importance of the affective dimension of learning surfaced in study of the data. Feelings are often referred to in strong terms and frequently the references are intertwined with dialogue about practical knowledge or new beliefs. It appears, therefore, that attention to feelings is an important aspect of the learning process for members of HOPE. The perspective of experiential learning explicitly refers to attending to feelings in the learning process. As discussed in the earlier section on experiential learning, this dimension serves the purpose of reducing barriers related to strong feelings that need to be attended to before learning can happen. Also, feelings are used as markers in the learning process for evaluating and integrating experiences.  191 The affective dimension is also important because the “good feelings” that result from being with peers helps to build the trust that is essential in taking on the experiences of others as your own. Emotion is already a large factor in the experience of cancer. It is also clear that in the context of a self-help group, a lot of relief and emotion result from connecting with similar others. Feelings of equality, of camaraderie and of safety were commonly expressed. Glenda expresses her excitement over discovering HOPE: So it was kind of neat when I went and I found out that everyone was there for the same reason. They wanted to find a way to fight back, they wanted to find a way to help themselves, and HOPE offers them a choice. Like how to 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 affective elements of learning are not easily separated and in fact are dynamically linked was provided by Barb P.  She stated:  It definitely helped, very definitely helped. I don’t know what I would have done without them because they gave me hope, they gave me the information to fight, to want to fight, the support that you need, the emotional support. Because you need the medical but you also need the emotional. And I think you have to get the emotional from people who have gone 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’t have known about, you know (L4, 238). .  .  .  Another example of the different facets of experience being expressed almost as one was provided by Phyffis. She said: You realize that there’s a lot of hope, and ah, I think I knew right there at the 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 much greater extent than others but there is help inside of each person if they I have want to reach in and get it. And it’s not a religious belief. .  .  .  .  192  religious beliefs and this is apart from that. There again you get the feeling it’s going to be okay, that there is hope for ever ybody (Lii, 62, 131). .  .  Marilyn declared that “After the workshop I was on a real high and felt that I was going to be able to beat this which before I didn’t have that expectation” (Li, 267). Some outcomes are expressed in feeling terms: empower ment and hope were expressions frequently heard. This is not a surprise since Barbara, one of the staff persons, stated that the mission of HOPE is “to help people with cancer empower [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 hopeful attitude that there is--that we felt empowered--that there might be something that we were able to do to change that prognosis. We applied the meditation that we learned in the workshop, especially Maurice” (L1O , 512). Claude said this about his attendance at the Simonton workshop : “Most important of all, I came away from the seminar feeling that I was able to do something to help myself (Dosdall & Broatch, 1986, p. 24). Bridget’s com ments fit with this perspective. She said: “Our bodies have healing powers in the mind/body connection. I guess it, you know, is empowering. They help us to emp ower ourselves, [that] is basically what I feel HOPE is there for” (L2, 330) . .  .  .  Many of the members who were interviewed mentioned that they had learned to have hope. It was also evident in data collected at the workshops. Participants in a recent workshop stated: “I learn ed that there is hope even when cases are extremely advanced” and “I learned that there is hope, but it entails a lot of work and commitment.” It is believed that a sense of hope is an outcome  193 that feeds in a very positive way into the learning process as members work to build their experiential knowledge. A sense of confidence is similar in nature. David said: Everyone, Maggie, Barbara and Moyra, and they are all really healthy looking, vibrant and full of energy to do what they do. So I thought, these people do it--so. And all their cancers were serious ones and ones that could spread probably easier than mine and they were just full of life. So right then it kind of gave me confidence” (L5, 289). .  .  .  It is believed that the spiritual dimension of learning is also important but there were few explicit references to it. Examples of Glend&s experiences that could be placed in that category have already been given. Bridget related viewing her theological beliefs: I have certainly made a lot of, urn, changes in my life: lifestyles and outlook and attitudes and, urn, I guess the biggest growth would be spiritual. I I never gave much thought to my spiritual side before I was diagnosed. guess when you are faced with your mortality you start thinking about, you know, “What is there?”.. Heaven and hell are here on earth and I think it is 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 as people who are not well and again that is not meant as a put down I just feel at a different level not really up or down but a different place. And I think when we help ourselves that is going to happen. You can’t stay always being the sick person or the super cancer survivor. You have to grow and change but we can still use whatever stage that we are in to assist people. (Vi, 367). These expressions of the learning experiences of members of HOPE portray the depth of experience of learning associated with cancer and cancer care. The holistic quality of the learning is demonstrated by the mixture of affective, cognitive and spiritual learning.  194 There are other examples of aspects of the learning experiences of members of 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 “being with peers.” This is especially true of the section “being encouraged and getting support.” Many of the experiences discussed in the section “being with peers” can be viewed as outcomes but are considered more as processes in this instance because they appear to have a strong influence in the ongoing learning.  Being with Peers  Participants were asked what they thought helped them learn. Several of the data seemed to be grouped best by the theme “being with peers.” Mutua l assistance is based on the element of a mutuality which results from shared experiences. Therefore, the findings are not unexpected. In fact, all of the experiences of learning at HOPE related in some way to learning with peers. The examples of experiences in this section are demonstrative of the proces ses within peer groups and illustrate the strengths of this context. The value of learning with more capable peers is already evident in data which relate to outcomes. It is conclusively a most dynamic influence in the learning experiences of members of HOPE.  Barbara, one of the paid staff at  HOPE, 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 to carry on, continuing with, urn, like with ongoing exploration, ongoing meetings, ongoing contact was really important for me. So that was the most important. So I had this six week follow up course just after I did the workshop and that wasn’t enough. I just had to do another six week one  195 after that. And then my volunteering started. It was really important to me to maintain that contact. So I think my contact with the people that I met at HOPE, that was the most important thing that I did. That was the most 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 in other previously developed sections. In fact, some references to processes have already been explained in the other sections. The material has been organized so that the data are linked to the theoretical writings on adult learning. The context of a self-help group provides a holistic and dynamic set of activities that can easily be viewed as a community of social practice. This view is described by Lave and Wenger (1991) as situated learning. Situated learning is understood via the concepts of legitimate peripheral participation and zone of proximal development. Knowledge is believed to be socially constructed and learning 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 getting support.”  Activities outside the peer group but considered to be interrelated are  classed as “practicing” and “taking action.” Reflections by members demonstrated other processes performed independently of the group. “Thinking and evaluating” was already used as a section for examples of ways members’ activities supported transformative learning. A few examples of comments that demonstrate the value of being peers precedes the other presentations.  196 The Value of Being Peers Members of self-help groups identify themselves as peers on the basis of the experience with a problem or a situation that they have in common. The members of HOPE that were interviewed were asked how important the peer interaction was to their learning. One person rated it as “quite important,” all the rest said it was “very important.” In a recent workshop, participants were asked what they liked best about the workshop. Some of the answers were: “meeting other people in 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 same experience. I did go to the Cancer Agency for an evening support group for Cancer patients. I didn’t like it at all. I went with my daughter and it was conducted by a social worker and a nurse and they seemed removed from the situation so I thought they didn’t really seem to relate to the agony people 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 fears were legitimate, that I was afraid of dying so were they; they couldn’t sleep at night, neither could I. Everything was so much the same. It was so wonderfully reassuring to know that I wasn’t alone, that I had company in my trauma and that everybody with cancer felt the same hopelessness to start with. That fear was something else, boy! (L9, 367).  Sharing Being with peers involves a two way process of listening and talking. This was referred to as “sharing” by several members. The listening was described as beneficial because not only do the members hear about other’s experiences, their  197 pain and their joy, but they also get information on new ways of coping with different problems. They also get information abo ut treatments and techniques others have used (both traditional and alternative ) and perhaps most important: new ways to think about cancer.  Listening The beliefs of HOPE are very holistic in nature and include a consideration of care that goes beyond the commonly accepted medical treatments and involves helping oneself. New members do not just hea r new information. They hear new ways of thinking about cancer and about heali ng. These ideas are expressed as the ideology of HOPE which is “self as partici pant in healing.” Exposure to new ideas is a critical aspect of adopting a new persp ective (Taylor, 1989). The relationship of ideology and transformative learning has been discussed earlier in this chapter. When asked how it was that a group of peop le with cancer were helpful, Phyllis said: “I don’t know how it does but it does. When you listen to other people’s experiences--by doing that you lear n a lot about yourself. Your thinking may be right along one line and very wrong along another line and you’re able to balance out as you listen to other people” (Lii , 315). Bridget attended a HOPE workshop and sev eral information evenings. She also read extensively. In her words: “A lot of this information came through coming to groups at HOPE, from the actual workshop, from talking to other HOPE members, what they were doing for them selves” (L2, 488).  198 Talking The “talking” part of sharing is also valued. Marilyn discussed what kinds of things are shared in the group: Changes you make in your life, how you are dealing with situations. Just to talk about it helps you deal with the situations. Just verbally expressing it sometimes 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 it for a long time and I actually open my mouth and I say this is what I am going to do then I will do it. you sort of have more tendency to follow through on what you work out in your mind (Li, 140). .  .  .  Another important part of talking with peers is that you are more easily understood. 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 open up to” (L4, 343). This desire to talk about one’s experience with cancer and to be understood is paramount for most cancer patients. Moyra stated after one of the workshops that the reason they like to work in 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 also engendered in this way and are viewed as integral to the learning process. An atmosphere conducive to sharing is considered important. Moyra also stated this about facilitating the groups: Also, I think because I made a lot of mistakes and had a lot of difficulties that it helps people to hear that and I think perhaps my willingness to tell about some of the things that have been very hard in my life helps put the other 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 prior discussion of the sense of the leaders to not be prescriptive but rather facilitative.  199  One of the members also expressed this concern. You have to be careful about giving advice because people are working it through. So it is sometimes hard to not say what is obvious like “Why don’t you do this?” when the person is different and has to come to that conclusion herseff. It is a learning process (Ll, 151). .  .  .  Being Encouraged and Getting Support These elements of learning would have been appropriate in the section on the affective dimension of learning but have been placed here to provide a complete picture of the experience of learning with peers. They also could be classed as outcomes but are viewed as process elements because of the way they are expressed as meaningful in the ongoing process of learning. Marilyn especially appreciated the encouragement and support she received. It is more encouragement and support and I think the expressing of your feelings and your plans and when things are down, to be able to tell people who understand because they have done the same thing or gone through it or have comprehension. Who else but somebody that goes to regular cancer appointments knows how the aches and pains develop before you go, which all of us go through. When you share that and you talk about how they disappear afterwards, we can all relate. Where someone who hasn’t gone through it can’t imagine how you are having aches and pains which you think 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 the positive value placed on expressing feelings. The main reason that cancer patients are encouraged to bring a support person to the workshop is so the role of the support 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 a  200 practice session. The intention was to improve the ability to communicate feelings related to cancer within the supportive relationship. The support persons in the workshops also receive the benefits of sharing activities. In most workshops, there is a session when the large group is split, and the support persons have an opportunity to discuss their difficulties and concerns amongst themselves. Another benefit of having the support persons at the workshops is that they are exposed to the ideology of HOPE and often gain a different perspective of the experience of cancer. Marilyn stated: That was the wisest thing I did because my husband participated with me at the group and this was absolutely essential because be now has an understanding of it. He was not into any psychology even though I had a degree in psychology, he figures it is all garbage. He doesn’t have any bent to understand anything psychologically. He agreed to go if I wanted him to go. He even acknowledges that he got a lot out of it and I get continual encouragement from him to keep doing my meditation and great encouragement to go to my support group. I feel without him going to the workshop he wouldn’t have the understanding how important it is to me. I think 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 actually there 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 within the group to have ideas that are non-traditional. Alex said: “They are very open and don’t look down on anything you try and I think they would support you.”  201  Associating Associating is a term chosen to enclose the more social aspects of being in the group. Jim said this about the group: “I found them so inspiring and I found them such exceptional people that I was really attracted to the whole gang there and 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 than anything, 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 an exceptional 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 and most of the members are that way, that you, it rubs off. That’s what keeps me going. I can’t go as often as I’d like because of the distance but I will always feel the connection (Lii, 308). .  .  .  Another aspect of associating is seeing the possibility for living a normal life. Moyra states “they can have fun here and humour and laugh about it and it is perfectly permissable to have a good time though you may be ‘dying’ or very sick” (Vi, 632). When talking about the workshop she attended, Alex said: “The whole weekend you are with people who are in the same situation and we were laughing and having a good time and laughing at ourselves, too. I think that just showed 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 is expressed as having a positive influence such as “getting your batteries recharged”  202 (L2, 386).  Bridget reflected on her view of being around cancer patients, which  was in contrast to her husband’s. He had said he would not choose to be around people who had cancer and Bridget replied: “But I had cancer and you’re around me.” He said, “It is not the same. I don’t know how you can be around them.” And I said, “Well, they really give me a lot of strength.” Because you see, I mean, Ben, I remember one time we went on the old Baden Powell trail. It was quite a long climb and he only made about half way and he and his wife went back and waited for us. It was incredible! I mean this man was really, really sick and he died just a few weeks later. But he was out there living. You know, instead of at home waiting to die. You know, it is really--the word is on the tip of my tongue--inspiring. Very inspiring for me and like I said, it is like getting your batteries recharged (Li, 386). Other processes that appeared in the data were activities that could happen outside the group as well as within it.  Practicing and Being Involved Integral to the ideology of “self as participant in healing” is the notion of taking some action to support the beliefs. Through his observations and own experience 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 got people who aren’t prepared to get into self-help and make sacrifices to put out efforts to survive. I sometimes wonder if they really want to live some of 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 put into it and people who come out to the workshops like this one this weekend, if they don’t get in there and participate and get involved, if they just 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 and you name it I think I have tried it all. Some I probably benefited from to  203 some extent. Some I may have for a while and then didn’t and some maybe I didn’t at all (L4, 133). Barb also read book. There is an important point that has not been made yet. When books purport beliefs congruent with the ideology of a group, or if they provide other ways that readers can identify with them, they in a sense become an extension of the group members (Brufee, 1993). Barb P. talked about her experience reading recommended books. I think the first book that I read was “Getting Well Again” by Simonton and that had quite a profound effect on me and that started me. And that probably is the book that I remember the best because it is the first book that I read. And I was identifying with myself all the way through that book. I lent it to somebody and I wish, I can’t remember who I lent it to but I didn’t get it back and I really regret it now because I had underlines and stars and crosses and all sorts of things because I could identify with so much in that book. And it really boggled my mind and after that I started to 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 because it 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 session with HOPE because it was one on the reading list and I read that and that helped me quite a bit as well and the HOPE’s basis of what they say is based on Simonton’s thing anyway so they went hand in hand. They were both very similar to what they were trying to say or exactly the same actually so all these things, visualization--I never had done that before with anything so I did that this time (L5, 174).  Newcomer to Veteran There are some outcomes described by the members that relate to ways that they became involved in the practice of leading other groups or volunteering to organize activities related to HOPE. The phenomenon of movement of members  204 from a position of newcomer to one of veteran is essential to the learning within the context of self-help groups because it is the veterans that present the ideolo gy of the group to the new members. From the perspective of transformative learning, veterans have adopted the beliefs that form the ideology of the group. This phenomenon can also be explained from the perspective of experie ntial learning. Veterans are viewed as having accumulated experiential knowledge over a period of time from dealing with the problems of concern that is central to the group (Borkman, 1976). All members continue to build their experiential knowledge but it is recognized that the veterans have developed confidence in their knowledge base as they have integrated their own experiences with it. It is believed, however, that this phenomenon is best understood through the concepts of legitimate peripheral participation and zone of proximal development as presented by Lave and Wenger in their work Situated Learning: Legitimate Peripheral Participation (1991). As a way of understanding learning, the concept of legitimate periph eral participation encloses the notion of learning as being part of a social practice. It suggests multiple and varied ways of being located as a participant in this social practice from a peripheral position to one of centrality. Initial membership is necessary but other factors influence the progression. The zone of proximal development is a concept which further explain s the differences in movement. It defines the potential for development as the difference between current problem solving ability and potential for learning.  205 Potential for learning is defined by capabilities to engage in problem solving with teachers or more capable peers (Vygotsky, 1978). Excerpts from the interview with Maggie are presented to discover more about the transition of newcomer to veteran. She has been involved with HOPE for 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 to happen tomorrow or whatever. But when you are told, “Yeh, this is defi nitely growing and statistically there is no hope for you,” then you have to come 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 an effect on the physical growth, then that concept was so exciting to me that I believed that I could make an effort to try to stay alive and “Yes, I am going to die one day, but not right now” (V2, 292). Maggie related her enthusiasm for the concept of the mind/body connection and the influence of the mind on the physical body. You have some control over the course of the disease perhaps. I shouldn’t say “perhaps” because I do believe you do. But learning that there is a connection between the mind and the body, where the emotions, psychological health and the physical body- -because most of us have divorced that. For 50 to 75 years we have divorced them, kept them separate, either you’re mentally ill or you are physically ill and not realizing you could be both. And learning that there are things that they can do to help 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 the mind/body connection and it is evident that she has paid attention to her own practices and experience, including her doubts. The fact that I was well, that I was still well and I really believe in the concept so the more I voiced the concept out loud the stronger it became inside me so it reinforced my own belief because as you know this is not easy to do we are trying to change patterns of a lifetime and you can begin to doubt. I know that I have doubted my own ability for a long time. I have doubted because I took orthodox treatment in 1985 and began to doubt that I had anything to do with getting well. When I started to come to -  206  HOPE I realized that yes, I had. and then when I had a recurrence in 1989 that was really quite serious, because how can I tell people what I believe what I can’t seem to do myself. And that was reall y hard. But in a way it made me more human. Yes, and it made me more patie nt with people that yes, this is a difficult thing to do and also this time I chose not to do [traditional] medical treatment at all and so I got well again and so that was a big reinforcement, that I was definitely on the right track so therefore the confidence then was “Yes, it is okay for me to talk about, that this is possible” (V2, 406). .  .  .  Maggie says her involvement happened in a gradual way. “So that was how, it was sort of gradual, I got to know the ins and outs of the whole thing and the confidence 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 she assisted: And the feedback that you get from people well, you know, “I really was helped by talking to you,” “This has been really helpful to me.” And I am thinking what did I do and they felt helped, so okay , what I said must have been all right. So the feedback that I get is a good reinforcement and I have 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 enth usiastic about it therefore people look to me then for help, so it just sort of happ ens” (V2, 492). From this example it appears that both having an expe riential base for one’s knowledge and having it reinforced in experienc es are important. Reinforcement by one’s own continuing experienc es and by positive feedback from others are integral to the transition from newcomer to veteran. The movement from a peripheral position to one of centrality appe ars to depend as well on ongoing participation. Framing the transition of newc omer to veteran in this way  207 demonstrates the importance of ongoing participation in a community of social practice. Development and continuation of the community of practice is basic to the learning of future participants. Evidence that the shift to a leadership position may happen in a short period of time is provided by Glenda who lives in the Fraser Valley. She leads a support group for cancer patients and does volunteer “outreach” work in the schools 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 they showed you the visualization, the meditation and how to turn it around at night instead of the defeating self talk to positive self talk. Well, I was so excited when I came home from G.F. Strong when I was done in my three months there and Rick and I started our own group here using the meditation 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 is sponsored by the Cancer Society--the Living with Cancer Group--but I use all the HOPE techniques so it’s ah, it gets the word out faster because it is legitimate because the Cancer Society sponsors it. So it gives it the air of credibility (L9, 151). Although Glenda has chosen to “practice” in a group that is already established within the larger cancer volunteer agency, her transition is still expressed as one from newcomer to veteran. It is suggested that her swift movement in the transition can be explained by zone of peripheral participation. She was ready to learn within the group of other more experienced cancer patients. Both Jim and Jane also live in communities outside of Vancouver and also became involved in outreach activities. Jim, who started out not wanting to discuss his cancer with anybody, ended up starting a support group with a minister 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 for  208  three years. Apparently Jane’s readiness to learn had something to do with the particular peers that she was exposed to. Jane said:  I did join a support group after the first surgery, strai ght after, because I thought 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 to go 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 understan ds how I feel, like these people know what I am going through” (L8, 68). She knew that she wanted to go to 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 tell everyone about this. I have got to let everyone know what I have done and how I feel. So I came back and at work, I work with a lot of women, a lot of girls, and one of my bosses, I was telling her what I have just been to and I said 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 connections with the Kinsmen and Kinettes wrote to service club s on the Island. They found out that several clubs would donate money so they decided to try to have HOPE workshops on Vancouver Island. In the past three years, four introductory workshops have been held there with the sponsorsh ip of service clubs.  Readiness Implied in the concepts used in situated learning is the notion that progress in learning depends on both a readiness and an opportunity to be engaged in  209 learning with teachers or peers. Marilyn said this when asked about coming to a group like HOPE: You have to want to come yourself. You have to be searching, it is no good if 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 gentlemen go and he was so very, very negative and closed that he didn’t open his mind to any suggestions. I don’t think that does you any good. The individual must be searching himself. It’s not going to work if they’re doing it to please somebody else (Li, 235). When asked if there is anything special that is needed to be a member of HOPE, Bridget talked about sharing and about participating and being responsible. You need to be able to share. And you need to want to participate, to be responsible. Because just coming to HOPE is not going to do anything for you unless you are open to the things that HOPE offers and to the idea of empowering yourself. But I think the biggest thing is being able to share. I don’t know, maybe you could get something out of HOPE if you just came. I don’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 there are things, ah, I guess you have to believe that there is a mind/body connection and that your mind can affect your body. I think you have to believe in that. And if you do, well then if you heard anything about HOPE you may just explore it and may think it is not for me and not bother with any kind of a workshop or whatever or after talking to one of the women there, you know, you would touch a nerve and that is what it did for me and I thought well, I really wanted to explore this and go into it (L5, 494). .  .  .  Jim had learned from books and magazines about things like macrobiotic diet, relaxation and positive thinking. Someone gave him the Simonton book, and he became interested in psychoneuroimmunology and “tried to concentrate on positive thinking and relaxation, imagery and so on  I was getting on sort of  the surface of the thing, I wasn’t really into it” (L7, 38). He said he heard Claude  210 Dosdall on a radio open line show and ?he really caught my imagination, my attention.  .  .  .  I managed to get hold of Claude and found out that they were  having a workshop so I went to my first workshop with him and I have never lost touch with the gang ever since” (L7, 44). This demonstrates his readiness to connect with more experienced others in a process of situated learning.  Accessibility A critical component of the perspective of situated learning is that it requires belonging to a community of social practice. This implies access to learning opportunities and opportunities to participate legitimately. Accessibility to learning opportunities is an issue of varying importance to different self-help groups. Voluntary organizations require a steady intake of new members because some members leave once they have been helped. More importantly, when services are considered valuable, accessibility for the members is a great concern for the leaders. Opportunities for individuals to learn are essential to the maintenance of a social practice and are basic to sociocultural transformation (Lave & Wenger, 1991). HOPE is an example of an organization that is dedicated to providing learning opportunities for cancer patients. The leaders are seeking extra funding so programs and accessibility to them can be expanded. 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 understand that sometimes they need to talk about things now, and not [have to] make an  211 appointment for next week. So that, ah, our accessibility I think is import ant” (V3, 247). There were not many comments about accessibility to the workshops but Marilyn’s comments provide a good example of the evaluation that pote ntial members go through. She said: I needed some help so that’s when I decided. I think the cost was anot her factor because it wasn’t a recognized group and I asked at the Cancer Agency 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 month period and she took 15 minutes to half an hour out of her schedule just to talk to me privately. I asked her about it and she thought it was a good idea and everything was coming together. (Li, 24). .  .  .  As a perspective on adult learning, situated learning with the concep t of legitimate peripheral participation addresses issues that are dominant in learning with peers. It explains the ongoing learning of members as they associa te with each other. It also provides a frame for discussion of the transition or movement of learners from a peripheral position to one of centrality in the commu nity of practice. The issue of accessibility to learning opportunities can also be discussed within this framework.  Extension of Life There is a set of outcomes that have not yet been discussed. They are the outcomes related to extension of life. They were not included in the discussion on forms of learning related to the ideology of HOPE because causati on of cancer disease is multifactorial. It is also believed that several factors contribute the healing in cancer disease. The participants interviewed had involv ed themselves  212 in many activities as a result of their participation. Some had initiated changes before they joined HOPE. Different members participated in different ways and used different traditional treatments for their disease. Currently there is no scientific “proof’ of a direct cause and effect relationship between the extension of their life and their participation in HOPE. However, they are included here because the members have strong feelings about their participation in HOPE. Furthermore, the outcomes can be viewed as important markers for someone considering participation in HOPE or pursuing some of the learnings on their own. Members recognize that they cannot prove the results they have achieved are attributable only to their participation in HOPE.  Many feel like Marilyn who  reflected: “Well, my health turned around and I didn’t know exactly what changed it but I wasn’t about to let go of anything that might be keeping me well so HOPE was part of it” (Li, 252). The participants interviewed were selectively chosen for their reputation as successful learners and are viewed as cancer survivors. This is not to say that all the members interviewed were formally told by medical professionals that they were “terminal,” i.e., there were no more traditional treatments available for them. 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, there were many references to having had “clear” reports upon checkup. When asked about the benefits of participating in HOPE, Bridget stated “It has made a difference in as much as I am here five years post-diagnosis and in remission, I  213 mean recurrence free. And it is a good feeling for me to think that I participated in 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 remove all of the tumour because it “was situated in a portion of my brain that was next to an area that controlled by left arm and if they had got any closer they would have destroyed the area and I wouldn’t be able to use my left arm” (L5, 87). Now he reports that: My last CT scan was in the end of June. They said they really couldn’t tell if there was anything there except for scarring from the original surgery. So it was like totally gone which was great news. I couldn’t quite believe 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 then said: So much of my help was on the psychological level. And I think, I think you have 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 a wonderful 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 of learning with peers: the important processes that can happen on the basis of the shared experience and the movement of members from a position of peripherality to a position of centrality. The concepts of legitimate peripheral participation and zone of proximal development assist in understanding these phenomena. They also provide a context for discussion of readiness to learn within a group of peers and the accessibility of such learning opportunities.  214  Summary Taken all together, the learning experiences expressed by the participants of HOPE were exciting and fruitful. From my own experience I think they were also challenging and rewarding. Organization of the data was challenging and many circular routes were taken to map out a picture of the experiences of learning of members of HOPE. Three different but overlapping perspectives on adult learning were used as guides. Concepts and propositions that are prominent in writings on transformative learning, experiential learning and situated learning highlighted certain data and provided meaningful interpretation. The analysis of the data involved an interplay between the theoretical writings and the data. Certain themes emerged from the data. They have been identified as: the ideology of HOPE as the framework for learning, experience is the condition for knowledge, the affective dimension of learning as integral and being with peers as an important medium in the learning process. Learning with peers is highly valued and 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 is both colourful and changeable. A summary does not do justice to the material in this 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 life threatening situation so you’re a whole lot more apt to be open to learn something especially when it hits home directly with what you are feeling and what you have been through (L5, 627).  215  CHAPTER SEVEN SUMMARY, IMPLICATIONS, LIMITATIONS AND CONTRIBUTIONS  My interest in HOPE Health Cancer Centre began in 1984 when I attended a presentation on HOPE made by Claude Dosdall and Moyra White, co-founders of the organization, while I was a practicing community health nurse.  At that first  encounter I was impressed with their work and it renewed my interest in the use of relaxation and visualization techniques in promoting health for myself and others. In 1988, I attended a second workshop- -this time as a cancer patient. My view was very different during the second workshop because I arrived burdened with the fears and the sense of helplessness that seem to be unavoidably connected with the experience of cancer. Since that time my continued learning about cancer, about myself and about care of myself through my involvement with HOPE has been a significant and rewarding part of my life. At the time of my cancer diagnosis I was taking courses in adult education at the University of British Columbia. The decision to focus on HOPE Cancer Health Centre for my thesis requirement was not made lightly. Although I was initially enthusiastic about listening to and recording other’s experiences, I seriously questioned my ability to take care of myself in the process of being immersed for a lengthy period of time in the world of cancer and care of cancer patients. The emotional tension that I expected was not unmanageable but the demands 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 patients  216  are “treated.” I learned enormously about cancer and cancer care and about selfhelp. I am very indebted to my peers for sharing their learning experiences with me. My own learning experience was a process of discovery and reward. In keeping with the qualitative approach, this study has provided a comprehensive description of the HOPE Cancer Health Centre and of the multiple realities of selected members of HOPE as they experienced learning as participants of HOPE. Research questions articulated early in the research process were used to focus the collection and analysis of data. These questions were formulated from literature on the subjects of self-help groups and adult learning in conjunction with my own sense of what might be valuable for interested readers. The questions are repeated here and will be considered in turn as a way of summarizing the findings. The rest of this chapter implications of the study, limitations of the study and contributions of the study.  Summary The following questions have been the focus of the research and have been answered 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 the changes been and what has influenced the changes?  4.  How is the organization maintained?  217 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 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 a result of participation in this group?  10.  What changes in the nature of members’ participation or movement in the organization, if any, do members relate?  HOPE Cancer Health Centre HOPE Cancer Health Centre is an autonomous self-help organization and is believed to be the first organization for cancer patients in North America founded by cancer patients. Located in Vancouver, British Columbia, it continues to operate under the leadership of individuals who have had the experience of cancer. It is registered as a non-profit charitable organization.  218 Characteristics Similar to other self-help groups, HOPE’s purpose is to assisting its members with a specific problem or concern in a way that is different from the focus in the dominant culture or professional care giving system. The atmosphere of mutual assistance capitalizes on the benefits of the experiences and knowledge of “similar others” (Riessman, 1987). At HOPE, the focal problem is the experience of cancer in a context of the social isolation, fear and despair that are related to the lifethreatening nature of the disease. The emphasis in our health care system is on curative medical treatments; their success with cancer diseases is still limited. The limited provision of psychosocial care in the formal health care systems adds weight to the problem. The belief system or ideology developed at HOPE to assist cancer patients in becoming 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 the disease of cancer, that there are psychological and emotional components to cancer causation 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, body and spirit are intrinsically connected and that each domain is influenced by the others. A second related belief is that a position of power and control is more health inducing than one of helplessness and powerlessness. The second belief is central to the self-help ethos (Suler, 1984). Members are encouraged to make a  219 shift toward taking responsibility for their own well being, rather than assuming the position of “needing to be taken care of.” The composition of HOPE is similar to that of other self-help groups and is a mix of newcomers and oldtimers or veterans, as they are referred to in the literature. The efficacy of these groups is partially explained by the fact that both referent 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 of concern. This is the case at HOPE.  Differences HOPE Cancer Health Centre is not significantly different from other self-help groups. Because the work of self-help groups is often at the edge of acceptability in mainstream culture, sanction is not readily conferred. In the beginning, HOPE did not get support from the formal cancer care agencies. The members of HOPE believe that the services provided should be available to all cancer patients and therefore has made special efforts to achieve continually improved relationships with professional cancer care providers and to gain wider acceptance of the beliefs that they purport. The fee charged for the introductory workshop differentiates HOPE from many self-help groups. In order to maintain a place where cancer patients can come HOPE is located in a store front located on West Broadway. This means their expenses are greater than self-help groups that meet in church basements or space in service clubs (e.g., Alcoholics Anonymous and Weight Watchers).  220 Unfortunately the fee is believed to be a deterrent to some potential members. In order to contain costs, advertising is by word of mouth. Another difference that is quite significant is the fact that many members are seriously ill when they join HOPE and many do die from cancer disease. This effects a great emotional toll on the leaders and also limits the availability of volunteers to help run the organization.  Members that have developed  experiential knowledge in self-help organizations are called veterans (Weiss, 1976). They play an important role because they exemplify the values of the ideology.  Changes Over Time The most notable change in HOPE has been a formalization of the programs based on a shift in focus to education and away from provision of support. The literature refers to growth of self-help organizations as mainly taking two directions: one toward more social action and the other toward professionalism. The findings indicated that the leaders and members of HOPE are most interested in the services they can provide and in becoming more professional. This shift has been influenced by the growing acceptance in the community of their services for cancer patients and of the beliefs that underpins the organization.  Maintenance of HOPE The maintenance of HOPE has been precarious at times as it depended in the beginning on the strength of the leaders and their financial resources, since they  221 frequently used their own money. The long time Director of HOPE, Claude Dosdall, 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 workshop fees, HOPE receives charitable donations from members, members’ families, service clubs and philanthropic organizations. Some of the characteristics of HOPE have been summarized. The diversity of self-help organizations makes them difficult to classify. Levy (1976) proposed a typology of self-help groups based on four purposes: behavioral control, stress coping and support, survival orientation and personal growth or self-actualization. It appears that HOPE Cancer Health Centre is an organization focusing on all but behavioral control. The features of HOPE as a self-help organization also define a context for the learning experiences of the members. Missing from this summary of the characteristics is the “milieu” of HOPE, which is described as warm, friendly, accepting, safe and inspiring. This is an important element in the learning of members of HOPE, the focus of the next section.  Members Experiences Learning as Participants of HOPE: Learning with Peers The characteristics which define HOPE as a self-help group essentially describe the context for learning for members of HOPE. The purpose could be rephrased: to “provide opportunities” for cancer patients “to learn” to become  222 actively involved in cancer care and recovery. Elements of learning can be viewed as context, processes and outcomes. It has been established that these elements are dynamically interrelated but the distinctions can be made for the sake of clarity.  Context Discussion of the context of HOPE is focused on the activities that are planned to achieve the group’s purpose. Similar to other self-help groups, the ideology of HOPE becomes the frame of reference for the learning of the members.  Activities The main activity planned for achieving the purpose of HOPE is a workshop, usually held on a weekend. The participants are cancer patients and their support persons. The leaders act as facilitators to initiate sharing and foster the process of mutual assistance. There is less emphasis on skills for implementing the “self as participant in healing” ideology than there is on helping participants work through any attitudinal and feeling shifts needed to redefine and establish new meaning to their experience. The source of help in self-help groups is the members themselves. Interaction is encouraged and time in the workshops is mostly spent in focused group discussions. Members are encouraged to participate to their level of comfort. The other activities of HOPE are both supportive and educational. Initial contacts by cancer patients or their families are by phone or “drop-in” at the office.  223 Information and support are provided in these contacts. One to one counselling, special education evenings or programs, library services and a newsletter are the other ways that members’ learning is encouraged at HOPE.  Ideology Ideology, in this context, has been defined as “not only the group’s explicit beliefs, but also its rituals, rules, of behavior, slogans, and even favorite turns of phrase” (Antze, 1976, p. 324). It is identified as central to the capability of a selfhelp group to effect change (Antze, 1976). It is certainly significant to the learning of the members of HOPE: several members made significant changes as a result of adopting new perspectives or learning within the ideology of HOPE. The set of beliefs which is based on the group wisdom has also been characterized as an “experiential knowledge base” (Borkman, 1976). Evidence of the experiential nature of the knowledge was clearly demonstrated and it is an important element in the learning of the members of HOPE as it appears to greatly assist members to open to the beliefs initially. The other important feature of the context is the focus on sharing by members. That fellow learners are “peers” sharing the common problem of living with cancer appears to be especially powerful. It adds a significant dimension to the learning of HOPE’s members.  224 Processes Several of the elements important to the learners in terms of their learning experiences have been alluded to. One is the power of their ideology. The fact that veteran members of HOPE are present to discuss personally how they have validated certain beliefs through their own experiences of cancer care and recovery strengthens the beliefs. “Learning with peers” can also be viewed as the context for learning. It sets the stage for learning by establishing a common ground and a camaraderie that fosters trust. These elements assist members to open to the new learning experiences. The affective dimension of learning is profoundly important as all learning relates to the emotionally laden experience of cancer. Members are able to continually support one another, not only with essential emotional support, but also 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. Cancer Agency. Still, it is believed that HOPE offers unique learning opportunities for cancer patients.  225 Outcomes A wide range of learning outcomes were identified by members of HOPE. The participants in the research were a small number and were purposefully chosen for their reputation as “interested” members. The learning outcomes were expected to be positive; this was indeed the case. The outcomes can be classified in several ways. First of all, there were outcomes related to qualitative differences in the way individuals felt or experienced their cancer as a result of their learning experiences. These outcomes varied from having a sense of control, feeling excited and no longer feeling ashamed, 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 exercise routines, and stress management techniques were also named as important learnings. These outcomes fit well into a frame of forms of learning which includes forms of transformative learning (Mezirow, 1991). The members were asked about any significant changes that they had as a result of their participation in HOPE. The question was asked with the knowledge that members exposed to an ideology such as HOPE’s had the potential for redefining or reframing their experiences by transforming meaning perspectives or meaning schemes to achieve a more inclusive and discriminating understanding of one’s experience (IViezirow, 1981). Evidence of this kind of learning was highlighted by phrases such as the “new me,” or “my mind was boggled,” and “it changed my world.” Transformative learning precedes new learning of the other forms, when individuals come with inadequate or insufficient  226 meaning schemes or meaning perspectives initially. Some members, myself included, already had the perspective but wished to expand their learning within that frame. Only one of the members interviewed was having treatments at the time of the interview, but all attributed their good health status at least partly to the learnings they had experienced at HOPE. The causative factors of cancer are not completely known. Also, effects of certain treatments vary from one person to another; therefore cause and effect relationships are difficult to establish. One person suggested that since she was well, she would not change anything even though she could not be sure about what really helped. It is clear that experience plays a significant role in the learning of participants of HOPE. The learning outcomes were identified by the changes in the lived experiences of the members. The learners use their own experience and the experiences of trusted others to validate the beliefs and build their own knowledge base. Another perspective is provided by viewing the self-help group as situated learning: a social practice that is evolving and changing with the members’ own learning. This view suggests that learning happens through the legitimate peripheral participation of members. A final consideration in this summary of the findings is the movement within the 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 adult  227 learning, thus demonstrating the power of the adult learning literature to illuminate 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 the phenomenon because members that become veterans have built an experiential knowledge base. Concepts of legitimate peripheral participation and zone of proximal development in the situated learning literature are useful in viewing the phenomenon as one of participation in a community of social practice. The three conceptual frameworks selected from the literature on adult learning were profoundly useful in interpreting the learning experiences of members of HOPE. Each was utilized in a different and beneficial way. There are certain implications as a result of the findings and their interpretations.  Implications of the Study The focus of this study was broad. It included a comprehensive description of HOPE as a self-help organization and learning community and study of the learning experiences of members of HOPE. Background for the research was found in the areas of health promotion, cancer care, self-help groups and adult education. The implications of the findings are also broad and will be considered within the same large areas.  229 underscores the reluctance to look beyond traditional medicine for beneficial therapies. More studies are needed on exceptional cancer patients to determine more about the relationships of all factors involved in cancer recovery. The effects of hope, inspiration and a sense of personal power cannot be put aside. Until more studies are done a philosophy of care that emphasizes care over cure and encourages more active involvement in healing by the patients is needed.  Self-Help Groups Early 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 from the perspective of self-help groups as legitimate care providers in a larger system of care which includes professional care and informal care (such as that provided by family and friends). The distinctions are based on differences in characteristics such as knowledge base and source of help. One of these characteristics is the experiential basis of the knowledge base in self-help groups (Borkman, 1989; Powell, 1990). The extent to which these findings can be generalized needs to be determined. Experiential knowledge of the leaders has been determined to be of prime importance. It has also been reported by the members of HOPE that the context of learning and the opportunities for learning of different forms is valued.  Self-help groups could be assisted in  230 designing their activities and programs to capitalize on the experience of members. The leaders of self-help groups could be assisted to develop effective learning facilitation skills.  Adult Education Implications in the area of adult education arise from the single fact that selfhelp groups are learning communities. They should no longer be ignored. More studies informed by the interests of adult educators need to be carried out. Findings focused from this perspective would contribute to the ongoing study of adult 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 of experiential knowledge. This research has revealed the profound importance of experience in the learning of the members of HOPE. It is both the medium of learning and the means for members to validate their beliefs. Further, experience is 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 of all forms. Emancipation is a dominant theme in adult education. Several recent works have focused on transformative learning and emancipatory education (e.g., Mezirow & Associates, 1990). This study has surfaced findings that appear to support, at least tentatively, a relationship between personal power and well being. If having a “sense of control” and knowing that “I have resources” are viewed as important outcomes, it appears that more study of the effects of  231  empowering experiences are essential. More specifically, adult educators can be of direct assistance in interpreting ways of fostering transformative learning and experiential learning. The writings on situated learning encourage further study of learning with peers and also provide links to the literature on emancipatory education. The concept of legitimate peripheral participation creates a demand for attention to issues of social organization and control of resources. If patient participation and involvement in the process of healing is as critical as it appears, both patients and professionals will need re-education in order to expand their roles. Further study of this dynamic is required, but it appears that there is a signal for transfer of knowledge of emancipatory education to professionals in the health care system. These implications may be difficult to take seriously on the basis of one study. 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 of this study will encourage further exploration.  Limitations of the Study The naturalistic-phenomenological tradition “consistently points to the essential inter-connectedness of objects and events which occur in the everyday world of human action” (Collins, 1984). The qualitative approach helps to discover and describe phenomena from the perspective of participants and was an effective method for this study. A broad comprehensive description of HOPE Cancer  232 Health Centre and a rich presentation of the learning experiences of members of HOPE 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 of depth and specificity. The areas where more in-depth research could be done were highlighted by the introduction of conceptual frameworks from the literature on adult learning. The use of some concepts in the frameworks to provide focus and interpretation for the data made more obvious the many areas where more specific research could be formulated. The data was collected in narrative style which led to the discovery of the multiple realities of the participants. This kind of data is tied to the context in which it is derived and is limited in that way. Generalizations to other groups are tentative until further studies are done. It must be noted that the intent of the study was to gain understanding of the phenomena of learning within the context of a self-help group and not to do an evaluation of HOPE as a self-help organization. The number of participants in this study was small. There were a total of 26 new members in the two workshops I attended. No new members were interviewed because it was believed their learning was in an early formative stage. Fourteen members that were viewed as veterans were interviewed. These members were purposefully selected for their reputation as learners. As well, three of them are the current staff members at HOPE. The selection process meant that the data was weighted overwhelmingly toward the positive. The lack of negative information about members learning also could be a reflection on the particular individuals that  233 chose to join HOPE in the first place. Certainly, generalizations about all members of HOPE cannot be made from the data. The commentary is limited to the 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 is believed that people tend to forget unpleasant experiences, the reports may be colored toward the positive. The interviewees did not report a tension that I have occasionally felt between the notion of self-responsibility and self-blame. Encouragement to stay in the present moment rather than dwell on the past is helpful but is sometimes difficult when fear and worry seem to be the predominate feelings. There is a need for longitudinal study of members of HOPE in order to get a clearer and more accurate account of the learning.  It would also  be worthwhile to determine what factors influence individuals to join HOPE and also to study the many cancer patients that claim they have achieved good outcomes 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 evidence pointing to the positive impact of the ideology of HOPE is so great that it reduces the significance of my bias. The area of social policy related to self-help groups was not included in this study. There are implications in this broad area and lack of review of the specific issues could be viewed as a serious omission. Even with these limitations the study contributes in several ways.  234  Contributions of the Study A meaningful contribution of this study is the detailed description of HOPE Cancer Health Centre. As an independent self-help organization, it has reached over 2,000 cancer patients in some way, yet is not well known to the public or to professional health care providers. Presentation of the learning experiences of members of HOPE, which may seem extraordinary, is not intended to provide a glowing recommendation of the work of HOPE. Rather it was intended to open discussion of possibilities of better approaches to care and treatment of cancer patients. The psychosocial needs of cancer patients have been highlighted in ways that support more serious evaluation of the present limitations in the care given to cancer patients in the care facilities. The study has demonstrated that mutual assistance provides a viable and meaningful way to enhance the care system. It is believed that development of a framework for enclosing data related to self-help groups is a contribution. It can facilitate the description of self-help groups and other community learning organizations and helps to highlight their uniqueness. It can also provide a way of clarifying the unique contribution of the self-help care system within the larger care giving system. The study was also intended to highlight those elements of adult learning that appear to be critical in this context. Openings for exploration of these elements in other contexts have been shown. Experiential learning and transformative learning have well developed concepts that can be studied further in this context. Study of learning with peers has not been a focus in literature on  235 adult learning and the addition of situated learning to the collection of writings is welcome. It is believed that the benefits of learning with peers have been highlighted to the extent that interest in models of adults learning with peers will be renewed. It is believed that what has been presented may spawn or renew an interest in several areas of adult learning. Listening to the stories of members of HOPE was an inspiring activity and the presentation of the stories is a significant and worthwhile document for me and other cancer patients. “In listening to the stories told by countless human lives, we more richly unfold our own, which (as is true of each) will be a story told only once and yet will be the story of everyone” (Cell, 1984, p. 19). It is also believed that a contribution has been made to cancer patients. More importantly, cancer patients made this contribution to themselves.  236  REFERENCES  Achterberg, J. (1985). Imagery in healing: Shamanism and modern medicine. Boston: New Science Library. Antze, P. (1976). 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Ottawa charter on health promotion. Ottawa: International Conference on Health Promotion. World Health Organization (WHO). (1984). Health promotion A discussion on the 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.  248  APPENDIX A Data Collection Tools and Ethics Release Forms  249 CONSENT FORM (Interviewees) Participant 4  I,  am willing to participate in an interview with Jean  ,  Rae, and understand that the information I provide will be used as research data in her study of the HOPE Cancer Health Centre. AND  I,  ,  wish to remain anonymous and understand that  Jean Rae will code the information so that confidentiality is assured. OR I,  ,  choose any information provided by me to be  identified with my name in the printed document of the research study on HOPE Cancer Health Centre. AND I, letter and consent form.  Date:  have received my own copy of the introductory  250 INTRODUCTORY LETTER (Learners) (UBC Letterhead)  Dear HOPE Member: My name is Jean Rae. I am currently pursuing a Master of Arts in Adult Education degree at the University of British Columbia. For my thesis, I am gathering information about HOPE Cancer Health Centre, as a self-help organization and about the learning that individuals experience as members. Because you have been actively involved in HOPE, I would appreciate being able to ask you some questions about your views of HOPE as a selfhelp group and what being a member means to you. My primary interest is finding out from you what you learned as a member of HOPE. The material that I collect will be organized and printed in a volume that will be placed in the library at the University of British Columbia. The title of the project is: “HOPE Cancer Health Centre: A Descriptive and Analytic Study of a Self-Help Group.” I believe it will be a worthwhile addition to literature on 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 to participate in an interview, your decision will in no way jeopardize your membership in HOPE. I have several members to invite to be interviewed and I will simply ask someone else. If you do wish to participate you will be asked to sign a consent form however your consent to the interview does not mean you are obliged to answer all the questions. Also you may withdraw at any time. The interview will take about sixty minutes.  251 In any research project it is important that confidentiality be assured and the University of British Columbia has asked me to provide you this assurance. The interview materials will be number coded to protect your identity and will be destroyed following the data analysis. I would like to add that if you would prefer to have your name used in the study, that option is available to you. The following form will help you designate your wishes. If at any time you have questions about the interview or the research project please telephone me at 737-7547 or my research advisor, Dr. Tom Sork at 822-5702. Sincerely,  Jean Rae  252 Interview Schedule for “Learners” I assume that your membership in HOPE has had some influence on you and that 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 this learning happened. 1. First can you tell me about getting a diagnosis of cancer. When did that happen and what was that like for you? 2.  How did you find out about HOPE? When did you join? What was the reason 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 about them? What do they mean to you now? or What did you hear at HOPE that has been important to you?  4.  What activities, events or situations have you found to be helpful? Why is that?  5.  Would you say that you learned new things since you joined HOPE? Tell me what you have learned. Is the learning at HOPE different than you would get somewhere else?  Do you think that your way of thinking  about 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 you think that what you have learned has made it easier or more difficult when you visit your doctor? What about dealing with your illness related  253 problems at home? 7.  When you think of how you learned those things, were other members involved and what was the situation? On a scale of 1-5 how would you rate the importance of the interaction with the other member/s? Why was this important?  8.  Have you seen other people at HOPE change over time? Can you describe this?  9.  Is there anything special that you need in order to be a member of HOPE? What are these? Did you always have them or have you learned some things since you joined? How did you learn those things?  10. Is your participation in HOPE different than it was when you first joined? Has anything helped you to maintain your participation in HOPE? What? 11. Did you have an idea of what to expect when you joined HOPE? Is what you have been talking about pretty much fit with your expectation? 12. What difference does it make that the participants of HOPE are also cancer patients? (If this has not been answered afready).  254 INTRODUCTORY LETTER (Veterans) (UEC Letterhead)  Dear HOPE Member: My name is Jean Rae. I am currently pursuing a Master of Arts in Adult Education degree at the University of British Columbia. For my thesis, I am gathering information about HOPE Cancer Health Centre, as a self-help organization and also about the learning that individuals experience as members. Because you have been actively involved in HOPE, I would appreciate being 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 is finding out from you what you learned as a member of HOPE. The material that I collect will be organized and printed in a volume that will be placed in the library at the University of British Columbia. The title of the project is: “HOPE Cancer Health Centre: A Descriptive and Analytic Study of a Self-Help Group.” I believe it will be a worthwhile addition to literature on 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 to participate in an interview, your decision will in no way jeopardize your membership in HOPE. I have several members to invite to be interviewed and I will simply ask someone else. If you do wish to participate you will be asked to sign a consent form however your consent to the interview does not mean you are obliged to answer all the questions. Also you may withdraw at any time. In any research project it is important that confidentiality be assured and the University of British Columbia has asked me to provide you this assurance. The interview materials will be number coded to protect your  255 identity and will be destroyed following the data analysis. I would like to add that if you would prefer to have your name used in the study, that option is  available to you. I will be asking you to complete a consent form that will help you designate your wishes.  I will be contacting you by phone to further discuss your possible participation and to set up an appointment time if you are willing to be interviewed. The interview will take about sixty minutes. Also, if at any time you have questions about the interview or the research project please telephone me at 737-7547 or my research advisor, Dr. Tom Sork at 822-5702. Sincerely,  Jean Rae  256 Interview Guide for “Veteran” Members The study that I am doing has a number of aspects to it. I am interested in HOPE as a “learning organization” with a mission, activities, leaders, etc. I am also very interested in the participation of individuals in HOPE, what influence it has on them and how it is they benefit (if they say they do). In this discussion with you I would like to focus on your view of HOPE as an organization 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 are the changes and how do you account for them? 4. What do you consider to be the successes and difficulties that HOPE has experienced 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 belonging to 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? Which of these do you consider to be most important? What kind of activities have you participated in the most?  9.  How are the other benefits achieved?  257 10. I am interested in how it is that you became a leader in this group. Do you remember what influenced you to take an active leadership role or just how that happened? Were others involved? Who was and how were they involved? 11. What difficulties do you encounter in helping people here? How do you deal with these difficulties? 12. How long have you been a leader here? Do you believe there are any benefits 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 yourself as 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).  258 CONSENT FORM (Workshop Participants). Participant #  I,  ,  am willing to have Jean Rae use material I have  contributed during this workshop and I understand that the information I provided will be used as research data in her study of the HOPE Cancer Health Centre. AND I,  ,  wish to remain anonymous and understand that Jean  Rae will code the information so that confidentiality is assured. OR I,  ,  choose any information provided by me to be  identified with my name in the printed document of the research study on HOPE Cancer Health Centre.  AND I, letter and consent form.  Date:  have received my own copy of the introductory  259 INTRODUCTORY LETTER (Workshop Participants)  (UBC Letterhead)  Dear HOPE member, My name is Jean Rae and I have been a member of HOPE for five years. I am currently pursuing a Master of Arts in Adult Education degree at the  University of British Columbia. For my thesis, I am gathering information about HOPE Cancer Health Centre, as a self-help organization. I am also interested in the learning that individuals experience as members. The title of my project is “HOPE Cancer Health Centre: A Descriptive and Analytic Study of a Self-Help Group” and a copy of the final report will be placed in the library at the University of British Columbia. I believe it will be worthwhile literatu re on self-  help groups and on the learning and support needs of cancer patient s.  During this workshop I will be a “participant-observer.” In other words I wifi be noting the activities and interactions that take place during the workshop. I want to assure you that anything said by you during the worksh op will not be used without first getting your written consent. It is also import ant that you  understand that you have a choice about consenting to my using what you say during the workshop in my study. If you decide to not partici pate it will in no way jeopardize your membership in HOPE. I will simply exclude anything said by you from the material I collect during the workshop. In order to simplify the  process I have designed a consent form which everyone can consid er and sign only if they wish. Strict confidentiality will upheld if you decide to consent, although you may also choose to be named if you so desire.  260  I also have a survey that asks for information about the worksh op that you are attending. I would appreciate it if you would provide infor mation and remind you again that providing information for a research study is a choice that you make and choosing to not participate will in no way jeopardiz e your membership in HOPE. Simply do not complete the survey. Completion of the survey signifies your consent for the information to be used. To ensure conf identiality, please do not put your name on the survey. The survey will take abou t ten minutes to complete. If you have any questions regarding the research or this questionnaire you may contact me by phone (737-7547) or my research adviso r, Dr. Tom Sork (8225702). Sincerely,  Jean Rae  ____  ____  _  261 WORKSHOP PARTICIPANT SURVEY  Date  Birth Date  Sex  1. When was your cancer first diagnosed? YY 2. How did you find out about HOPE?  3. What helped you decide to come to a workshop?  4. What were your expectations for the work shop?  5. How well were your expectations met?  D very little D a little D satisfactory O quite well 0 very well  MM  262 6. Did you learn anything during the workshop?  Yes  No  If so, what did  you learn?  7. Is there anything you might do now that is different than what you were doing  before you came to the workshop? Yes  —  No  —  Please give examples  8. How important to you was having a support person invited?  D D EJ D Li  not important a little just medium quite important very important  9. 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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