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Nurses perceptions of their role working with people with severe mental handicaps in the community Church, Lorna Jean 1994

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NURSES PERCEPTIONS OF THEIR ROLE WORKING WITHPEOPLE WITH SEVERE MENTAL HANDICAPS IN THECOMMUNITYbyLORNA JEAN CHURCHB.S.N., The University of British Columbia, 1977A THESIS SUBMITTED IN PARTIAL FULFILLMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SCIENCE IN NURSINGinTHE FACULTY OF GRADUATE STUDIES(School of Nursing)We accept this thesis as conformingto the reQuired standardTHE UNIVERSITY OF BRITISH COLUMBIAAugust, 1994@Lorna Jean Church, 1994THE UNIVERSITY OF BRITISH COLUMBIAAugust, 1994Lorna Jean Church, 1994As I present this thesis in partial fulfillment of the requirements for agraduate degree in Nursing from the University of British Columbia, I understandand agree that the Library may make it freely available for reference and study.I also understand and agree that permission for any copying of this document foreducational purposes may be granted by the head of the School of Nursing or arepresentative thereof. It is understood however, that any copying or publicationof this thesis for financial gain shall not be permitted without my writtenpermission.(Signature)Department of NursingThe University of British ColumbiaVancouver, CanadaDate: August 22, 1994RoleIIAbstractIn British Columbia, people with mental handicaps are moving frominstitutions to living in the community and the British Columbia government hasrecently hired nurses to supervise the health care needs of these people. Abody of knowledge on which to base the specific roles for nurses working withthis client population is virtually non-existent. The purpose of this study was toexplore and describe nurses’ perceptions of their role in working with individualswith severe mental handicaps in the community.This was a qualitative, descriptive study. Sampling was theoretical andtwelve respondents were conveniently chosen. Data were collected throughtape recorded, semi-structured interviews which were transcribed verbatim andanalyzed using a process of inductive content analysis.Three distinct categories of nurse functions (with subcategories) emergedfrom the data: Collaboration, support, and teaching/learning. Collaborationincluded activities where the nurses worked with others and was divided intocomponents of consultation, liaison, and team participation. Support includedactivities related to maintaining the health of or meeting the needs of clientsand maintaining caregivers in their roles; it was comprised of advocating,assessing, documenting, planning, providing direct care, and relationshipRoleIIIbuilding. Teaching/learning encompassed activities related to teaching othersand self-learning.Collaboration and teaching/learning were stated to be major roles by all ofthe nurses. The support components deemed to be important were advocacy,assessment, planning and relationship building. Most nurses were doing casemanagement activities and saw this as their future focus. Travelling anddocumenting consumed much time and observation; communication, timemanagement, and interpersonal skills were important for each aspect of thenurse’s role.The most difficult part of the job for most nurses was advocating forclients while collaborating with caregivers at the same time. A major frustrationwas expressed when nurses identified the clients’ health to be at risk but feltthey were not listened to by caregivers.Nurses with advanced educational qualifications and experience workingwith individuals with severe mental handicaps appeared to be the mostcomfortable in the collaborative and teaching roles. Ongoing inserviceeducation and support are required for nurses working with this clientpopulation and it is realistic to consider a baccalaureate degree as a minimumrequirement for this job.RoleIvTable of ContentsAbstract iiTable of Contents ivList of Figures viiiAcknowledgements ixCHAPTER ONE: INTRODUCTION 1Background to the Problem 1Conceptualization of the Problem 5Problem Statement 7Purpose 8Research Question 8Definitions of Terms 8Assumptions 10Limitations 10Significance of the Study 11Summary 12CHAPTER TWO: REVIEW OF SELECTED LITERATURE 13Health Concerns 14Staff Related Issues 20CHAPTER THREE: METHODOLOGYResearch DesignSelection CriteriaSelection ProcedureData CollectionData AnalysisProcedure for Data AnalysisReliability and ValidityEthical ConsiderationsSummaryCHAPTER FOUR: FINDINGS .Description of ParticipantsThe Role of the Nurse Working withHandicaps in the Community .The Collaborative RoleThe Support RoleThe Teaching/Learning RolePeople with Severe Mental606065687385The Nurse’s RoleSummaryRoleV273537373839404445535859RoleviOther Findings 88Summary 90CHAPTER FIVE: DISCUSSION OF FINDINGS 92The Role of Collaboration 93The Role of Support 99The Teaching/Learning Role 108Other Activities 114Summary 115CHAPTER SIX: SUMMARY, CONCLUSIONS AND NURSING IMPLICATIONS117Research Summary 117Conclusions 118Nursing Implications 119Implications for Nursing Practice 120Implications for Nursing Education 124Implications for Nursing Research 127Summary 131REFERENCES 134RoleVIIAPPENDICES 140Appendix 1: Information Letter to Prospective Participants 140Appendix 2: Participant Consent Form 141Appendix 3: Trigger Questions 143Appendix 4: Category Scheme 144RoleVIIIList of FiguresFigure 1: Categories and Subcategories of the Nurse’s Role 65Figure 2: The Nurse’s Role Working with Individuals With SevereMental Handicaps Living in the Community 68RoleixAcknowledgementsI wish to acknowledge the support and guidance of my thesis committee;Professors Connie Canam (chairperson), Linda Leonard, and Ray Thompson,who provided me with the advice and encouragement necessary to completethe development of this document. I also wish to acknowledge the support ofthe Vancouver Health Department Research Committee, In-School Supportsupervisor, and Provincial Program Manager for Health Services for CommunityLiving, Karen Graves, who facilitated the process of participant selection. Iwould also like to thank the twelve nurses who shared their perspectives oftheir role with me.I am also grateful for the support and encouragement of my family. Mypartner, Dennis Thompson, was remarkably patient and provided theinterventions necessary to keep the household somewhat normal. Mydaughters, Bonnie and Jennifer, should also be thanked for their tolerance andadaptability.RoleICHAPTER ONE: INTRODUCTIONThis document reports on a research study that examined the nurse’s rolein working with people with severe mental handicaps in the community.Chapter One provides an introduction to the problem and the research study.Background to the ProblemIn British Columbia we are now moving awayfrom the large institutional model formentally retarded citizens. Communityplacement opportunities are being createdand retarded people trained for social andemployment integration into the community(VanderZalm, 1978).This position statement, originated by William VanderZalm (thenMinister of Human Resources in British Columbia), and cited in Adolph(1978), reflects the ideology of normalization for people with mentalhandicaps. This principle stresses the integration of people with mentalhandicaps into the mainstream of society. It is the principle of normalizationwhich has guided the government of British Columbia to make a number ofdecisions with regard to people with mental handicaps, including thedecision to provide community nursing services for those severely affected.The concept of normalization originated in Denmark where theprinciple of letting people with mental handicaps obtain an existence asclose to normal as possible was put into Danish law in 1959 (Wolfensberger,Role21979). Bank-Mikkelsen was instrumental in making this change. BankMikkelsen (1976) defines normalization as the right to normal livingconditions; the right to the same environments and privileges as othercitizens. The goal is to create a life for people with mental handicaps asclose to that of normal society as possible. Bank-Mikkelsen (1976) statesthat, it would, in a way, be correct to say that the normalization principle isan ideology which aims at normalizing society to make society accept peoplewith mental handicaps.The principle of normalization has now been supported in manycountries, including Canada, and today efforts are being made on a widemedical, educational and social front to humanize and normalize the lives ofpeople with mental handicaps (National Institute on Mental Retardation[NIMR], 1981). A number of driving forces, including the impact of newideologies in human services (basic human rights and normalization) areresponsible for establishing a social trend of community living for peoplewith mental handicaps.In British Columbia, efforts to downsize the institutions began shortlyafter 1959 and became publicly apparent when Tranquille (the secondlargest institution for people with mental handicaps in the province) closed in1985. The two remaining institutions are Glendale and Woodlands with acombined current population of approximately 200 adult residents. TheseRole3institutions are downsizing rapidly with an expected closure date of 1996 forboth. Most of the residents will be placed, in clusters of three or four, intocommunity group homes.Three major issues which have an impact on nursing and clients withregard to community living are client health concerns, group home staffrelated issues, and the lack of a clearly defined role for the nurse. Concernsabout client health are shared by many families, staff, and professionals inthis field. The current residents of Glendale and Woodlands are people withsevere mental handicaps. Many have multiple physical disabilities, such ascerebral palsy, epilepsy, and sensory disorders. These people have been inlarge institutions which have administered “custodial” care for most of theirlives. These factors have major implications for the movement of this clientpopulation into community settings. The maintenance of client health is ofgreat concern. Complex care plans are often required to address the manyneeds of these clients.Downsizing efforts to date have been concentrated on those peoplewith mild to moderate mental handicaps and very few physical disabilities.Although in recent years people with severe and multiple handicaps havebeen moving into the community, success of these placements has not yetbeen demonstrated. In a jointly written document Planning for the future: Aorooosal for services for peonle with mental handicaps. it is explained thatRole4current programs are targeted to the social needs and daily livingrequirements of individuals (the Ministry of Social Services and Housing[MSSH] & Ministry of Health [MOH], 1991). This document states thatwhile these are crucial aspects of community living, additional supports arerequired to ensure the ongoing health, safety, and security of all personswith mental handicaps.Baker, Seltzer, and Seltzer (1977) identify staff related issues as themost crucial factor determining the success of community group homes. Anumber of staff-related issues have an impact on the care given incommunity settings. These issues include large turnover, lack of stafftraining for group home caregivers, and stress related to the job of providingcare for people with mental handicaps. Staff training in group homes withclients with severe mental handicaps has been a difficult issue to address,particularly when complicated by staff changes. For example, I was onceasked to do a lifting program for staff at a group home I had already visited.In three months, there had been a complete turnover of staff.In an effort to address health care concerns of residents, thegovernment has implemented community nursing services. The newcommunity nurse positions are filled by nurses with previous workexperience at Glendale and Woodlands and nurses from the Home Carecomponent of the Continuing Care Division of the Ministry of Health. EitherRole5way, the roles of these nurses have changed. Nurses who were caregiversand supervisors of care now focus on teaching other caregivers andoverseeing health care needs of residents in group homes. The perspectivesof such nurses can provide valuable information for the ongoingdevelopment and assessment of this new role.Conceptualization of the ProblemCommunity living for people with severe mental handicaps is a newfield. There is very little information found in the literature which discussescommunity living for people with mental handicaps. Many people with mildto moderate handicaps have been placed in the community successfully, butthe future for those with severe handicaps is unclear. It is not normal forpeople to be looked after by nurses 24 hours a day. In an effort to beconsistent with the normalization principle, community group homes havenot been staffed by nurses. People with mild and moderate handicaps seemto have made this transition successfully, but it is a controversial issuerelated to those with severe mental and physical problems. Activities,including care and supervision of care, which have traditionally beenperformed by nurses, are now being delegated to non-professional staffworking in these agencies. Studies suggest that community living hasRole6resulted in a number of staff related issues as well. These include largeturnover, stress, and training deficits.Families, nurses, and others are concerned about the impactcommunity living will have on the client’s health. Some family members areterrified about sending their loved ones out to the present state of looselymonitored, unstructured, unsupervised settings when what is needed is dailysupport and professional assistance (C. Downing, written communication,January, 1992). Some nurses currently working at Woodlands feel anethical conflict in sending people out to be cared for inadequately (E. Snow,personal communication, June, 1993). They feel it is their duty as clientadvocates to ensure that health care needs are met, and yet the clients arebeing discharged into community group homes where there is no access toprofessional assessment or planning for health promotion and maintenance.Most professionals in this field believe that nurses, with the requirededucation and experience have a strong, positive influence in promoting andmaintaining good health status for people with severe mental handicaps.To address the many concerns about health, safety, and security ofresidents that have been raised, the British Columbia governmentimplemented community positions for nurses in this field in June, 1993.There are proposed additions to these positions in 1994 and 1995. Theroles for community nurses in this field, however, are new. There is veryRole7little published material which describes roles for nurses working withindividuals with severe mental handicaps. Until recently, most of thesepeople were cared for in institutions where nurses performed traditional rolesthrough functions such as giving medications, caring for basic hygiene, andmaintaining a healthy physical environment (Jarvis, 1981). Althoughcommunity living for citizens with mental handicaps has been implementedfor some time now, nursing services to support these placements were notpreviously positioned in the community, so little is known about the nurse’srole with individuals with severe mental handicaps in the community setting.Problem StatementBritish Columbians with severe mental handicaps are now movingfrom the institutions to community living. Families, nurses and others areconcerned about the impact of this move on client health. To address theseconcerns, the British Columbia government has implemented communitynurses in this field to supervise the health care needs of this population.This is a new endeavour for nurses and there is not yet a body of knowledgeon which to base the specific roles for nurses working in the communitywith individuals with severe mental handicaps.Role8PurposeThe purpose of this study was to explore and describe nurses’perceptions of their role in working with individuals with severe mentalhandicaps in the community.Research QuestionWhat is the nurse’s perception of his or her role in working withindividuals with severe mental handicaps in community residential facilities?Definitions of TermsThere are a number of terms used in this study for which definitionsare provided.1. “Community residential facility” refers to any type of facility outsidethe institutions where people with mental handicaps live. In BritishColumbia, the most common model for community living is a grouphome located in a residential setting with single family dwellings.There are usually three or four residents in each group home. Peoplewith mental handicaps also live in the community in families, fosterhomes, and individual care networks. Individual care networks aregroups of families with one or two people with mental handicapsRole9living in each family’s home. These families work together to provideservices for their residents.2. “People with mental handicaps” is a term currently used to describethe mentally retarded. Mental retardation is operationally defined assignificantly low intelligence with deficits in adaptive behavioursmanifested during the developmental period (American Association onMental Deficiency [AAMD], 1983). Significantly low intelligence ismeasured as an intelligence quotient less than 70, adaptivebehaviours are measured on a standardized scale, and thedevelopmental period extends to the individual’s 18th birthday. Allthree of these components must be present for a person to bementally retarded.3. “Nurse” refers, in this study, to professionals (licensed to practice byeither the Registered Nurses Association of British Columbia, or theRegistered Psychiatric Nurses Association of British Columbia)working with individuals with severe mental handicaps living in theCommunity.4. “Role” means functions performed by the individual. In this case, therole of the nurse refers to the functions the nurse carries out as partof the job.Role105. “Severe mental handicap” is operationally defined as those individualswho are mentally retarded, with an intelligence quotient of less than35. Often these individuals have many physical disabilities as well,and are referred to as individuals with multiple handicaps.AssumptionsSome assumptions were made which were not being investigated inthis study, but are directly pertinent to the investigation.1. The nurses will openly and truthfully answer the trigger questions.2. Nurses working in this field are able to identify the needs of theirclients.3. Nurses working in this field are able to discuss the nurse’s rolein terms of meeting client needs.LimitationsI have a lot of experience working with people with mental handicaps,and have been involved with program development for the communitynursing services. I have developed the roles for the nurses as I see them forthis program. Even though bracketing was addressed, as the interviewer, Iam aware that I was part of the context in this study and some bias existedbecause of that.Role11Significance of the StudyAs the large government institutions for people with mental handicapsclose, all services for these people, including nursing services, will be in thecommunity. Therefore, it is important to delineate nursing’s role in thisarena of health care. As one of the characteristics of a profession isdefining and delimiting its own roles, a nursing perspective for the ongoingdevelopment and assessment of nursing roles is important to the professionof nursing.The findings of this study provide information to add to a body ofknowledge for nurses working with individuals with severe mental handicapsin the community. They also point to additional research required in thisfield, as no inquiry was found from a nursing perspective. Potentialsignificance to clients’ health is also implicated by this study. Specificconcerns raised and discussed by the nurses need to be addressed.This study has implications for areas of nursing beyond thedeinstitutionalization of people with mental handicaps. The move bygovernment to place more health care services into the community will havea major impact on nurses in all fields. A nursing perspective of what nursesroles are in relation to individuals with severe mental handicaps can assistwith the development and assessment of nursing roles in other areas suchas community psychiatry, early surgical discharge, and continuing care.Role12SummaryThis chapter has introduced the research study. Backgroundinformation and conceptualization of the problem were discussed and theproblem statement, purpose, and research question were presented.Definitions of terms were given and assumptions and limitations mentioned.The significance of this study was briefly presented and will be discussed indetail with the implications of the findings in the final chapter of this thesis.Role13CHAPTER TWO: REVIEW OF SELECTEDLITERATUREReview of the literature reflects a limited state of knowledge aboutindividuals with severe mental handicaps living in the community, and mostof the literature is narrative in nature, rather than research based. Lord &Pedlar (1991) state that they are unaware of any reports of longitudinalstudies in the context of deinstitutionalization in Canada, other than theirown which discusses the examination of life experiences four years after theclosure of Tranquille. Knowledge of nursing services and perspectives ofroles in this field is even more limited.I have identified three major issues related to the research problemwhich will be discussed in the literature review. The first issue is a concernfor the health of group home residents. Community nurses have now beenhired to address this concern. The second is staffing issues which havebeen identified as the most crucial factor determining the success ofcommunity group homes (Baker, Seltzer, & Seltzer, 1977). The third issueis the role for the nurse in working with people with severe mentalhandicaps who live in the community. The literature review is divided intothree sections, reflecting these major issues.Role14Health ConcernsIn a document From institution to community: Family particiDation incommunity olacement Dianning, the adequacy of medical care in thecommunity is presented as a frequent concern voiced by families (MSSH,1991). Keill (1991) in an article written for a local newspaper describes hisdaughter’s experiences in a group home. In the past two and a half yearssince she was moved out of the institution, her encounters include a numberof unexplained bruises, a severe drug reaction which put her in a catatonicstate, and 35 days in the burn unit at Vancouver General Hospital as a resultof taking a bath at the group home. Keill states that she is still sufferingfrom the effects of the drug reaction and that he was never told what kindof medication she was given or anything about possible side-effects.The literature found regarding health concerns for people with severemental handicaps living in the community, however, is very limited andpredominantly narrative. Most examples are newspaper articles like Mr.Keill’s, written by parents or disgruntled staff and cannot be consideredobjective. They do, however, bring up a number of crucial issues related toresident health and safety, and therefore provide information which will bevaluable in the study of nursing roles.In an effort to identify and determine the relative frequency of seriousincidents, Spangler, Gilman, and Laborde (1990), analyzed incident reportsRote15in urban-based community group homes over a period of 18 months. Sevenhundred and seventy persons with mental handicaps were evaluated todetermine frequency and types of incidents. The authors do not discuss thedegree of physical disability of the residents, but identify 62% of subjectshaving severe or profound mental handicaps. Prior to placement in grouphomes, 69% of the clients resided in institutions.The identification of 3,075 incidents provides sufficient cause forconcern. These 3,075 incidents involved 446 (or 58%) of the 770 clientsparticipating in the study and those clients involved in incidents aredemographically similar to the general population studied. For example,62% had severe or profound mental handicaps. The 3,075 incidentsrepresent only those incidents which were reported. Experience indicatesthat for each reported incident, there are probably others. Findings from thisstudy indicate that medication errors, behaviourial incidents, and medicalemergencies comprised 86% of the incidents recorded. Medication errorsrepresented the greatest number of incidents. Most (82%) of thesemedication errors included situations where dosages of medication were notgiven, medication records were not signed, or medications wereadministered incorrectly. Behaviôurial incidents included aggression towardsothers, self-injurious behaviours, property destruction, and other maladaptivebehaviours. Psychiatric emergencies presented greater difficulty than theirRole16actual numbers indicate due to a lack of resources available to deal withclients who have severe mental handicaps and who are also diagnosed witha psychiatric illness (dually-diagnosed).The authors’ discussion of this study points out that multiplemedications, differing dosages, and administration schedules for variousindividuals, combined with high staff turnover make this a complex problemresistant to change (Spangler, Gilman, & Laborde, 1990). As many of themedications prescribed are psychotropic medications aimed at reducingpsychiatric symptoms and maladaptive behaviours, medication errors oftenresult in exacerbation of these conditions. Nurses are specifically trained inmedication procedures. Most group home staff are not.Merker and Wernsing (1984), physicians in the field of mentalhandicaps, state that individuals in this setting have specific acute andchronic medical problems including long-term use of medications. Manypeople with mental handicaps take anticonvulsants and psychotropic agentson a long-term basis. Often, group home staff complain that a resident isvery sluggish or fatigued. This behaviour may have been tolerated in aninstitutional setting where the resident had few responsibilities, but isdifficult in a group home where all individuals must work and interact.Psychotropic agents are often given in the institution to control behaviourswhich do not occur in a normalized group home setting. For these reasons,Role17medications must be reviewed and frequently changed. The nature of thedrugs and possible side effects of withdrawal and dosage alterations createa very complicated process which may result in physiological deterioration ifcarried out too abruptly (Merker & Wernsing,1984). Other specific problemsinclude exposure to hepatitis B. Merker and Wernsing (1984) state thatthere is a 50 to 90 percent prevalence rate of hepatitis B serologic markersamong people with mental handicaps who live in institutions. Although thisis an American statistic, it is anticipated that the Canadian prevalence wouldbe similar. As the hepatitis B virus is blood borne and may be transmittedthrough broken skin and mucous membranes, a carrier in a group homeconstitutes a potential risk for all other residents, staff, and family members.Problems with sexuality and contraception are also unique for thisgroup. Sexual abuse, public masturbation, and body exposure may haveoccurred in the institutions (Merker & Wernsing, 1984). The residents mayhave been sexually segregated and as relationships develop in thecommunity, the teaching of sexually appropriate behaviours andcontraception is often necessary. The individual’s cognitive deficits maymake this difficult.Merker and Wernsing (1984) suggest that acute medical problemsshould be treated in the physician’s office as the commotion of anemergency department will exacerbate behaviour problems. The mostRole18frequent acute problems are skin infections (often a result of poor hygiene)and trauma caused by behaviourial problems. This article, althoughnarrative, is based on the knowledge of physicians experienced in the grouphome system, and provides useful information about client health careneeds.Gambert, Liebeskind, and Cameron (1987) state that as thispopulation continues to grow older, they will be subject to uniquephysiological and psychological problems related to a lifetime ofdevelopmental disability, as well as all the usual age-related changes andillnesses. Lakin, Anderson, Hill, Bruininks, and Wright (1991) state thatpersons with mental handicaps are now more likely to survive into “old age”,even though their average life expectancy is still less than that of the generalpopulation.Bell and Bhate (1992) studied the prevalence of overweight andobesity in adults with mental handicaps living in the community. Their studymeasured the body mass index (BMI) of 183 adults in England. They foundthat 71 % of males and 96% of females with Down’s syndrome, and 49% ofmales and 63% of females with mental handicaps, but not Down’ssyndrome, were overweight or obese as compared with 40% males and32% females from the normal population (Bell & Bhate, 1992). Theprevalence of obesity was more significant. This study identified 19% ofRole19males and 35% of females as obese, compared to 6% and 8% for thenormal population.Bell and Bhate (1992) state that there is overwhelming evidence ofoverweight and obesity being hazardous to health and often associated withincreased mortality and morbidity. Obesity is also associated with coronaryheart disease, hypertension, gallstones, diabetes, gout, decreased lungfunction, and osteoarthritis (Royal College of Physicians, 1993). The BMI isa widely used method to calculate overweight and obesity, but validity inindividuals with mental handicaps and reliability is not discussed by Bell andBhate. The subjects included all cooperative clients for two day centreswhich appear to be conveniently selected. Although the survey is on a smallpopulation, a significant health concern is identified.It seems, in an effort to be consistent with the concept ofnormalization, we have moved away from the medical model of theinstitutions to a social model which excludes the health aspects ofcommunity residents. At a meeting in New Westminster, B.C., people withgroup home complaints were told by Terry Pyper, assistant deputy ministerin the Social Services Ministry, that the new and improved operational planfor deinstitutionalization is addressing a lot of the concerns raised by families(Royal City Record, January 23, 1991). This includes the concern thathealth status is not being monitored and appropriate care is not being given.Role20The plan includes the introduction of nurses in community roles. Nursingservices which are guided by a comprehensive nursing model will encompassboth health and social needs, providing a more consistent andcomprehensive approach to care.A number of concerns regarding the health of people with mentalhandicaps living in group homes have been raised. Parents are concernedabout accidents, and there have been many documented medications errors.Incidents related to maladaptive behaviours which are difficult to deal with,hepatitis B exposure, and problems with sexuality and contraception havespecific significance for people with severe mental handicaps. Healthhazards related to obesity and long-term medication usage are alsoimportant.Staff Related IssuesThe three most serious problems of community residential facilities areinadequate funding, staff training, and staff maintenance (O’Connor & Sitkei,1975). Although staff related issues are identified as critical to the successof a group home (Baker, Seltzer, & Seltzer, 1977), these issues have,unfortunately, not been sufficiently addressed. In a comprehensive reviewof the literature, Heal, Sigelman, and Switzky (1978) did not include anyreferences concerned specifically with staff issues and McCord (1981) foundRole21very little inquiry into the work lives of group home staff. Since 1977, asmall number of studies have investigated the issues of large turnover,stress, and training of group home staff.George and Baumeister (1981) collected information from 21randomly selected community residential facilities in Tennessee to studystaff turnover. This study has many strengths. The group homes studiedwere randomly selected from a directory of all community residence facilitiesserving people with mental handicaps in Tennessee, and all staff andadministrators employed by the 21 organizations used were included assubjects. Only those separations due to voluntary terminations and firings(controllable separations) were used to determine staff turnover. Scalesused were supported by validation and reliability studies, and the data werecompiled over a fiscal year. All of these factors help to maximizegeneralizability to similar communities.The results of George and Baumeister’s (1981) study indicated thatlarge turnover in direct service employees was a significant problem whichresulted in inconsistent, unstable relationships between service providers andresidents. A total of 40 separations occurred from 55 full-time positions,representing an annual controllable turnover rate of 73 percent. Controllableturnover refers to that which cannot be attributed to uncontrollable factorssuch as illness and death. The major factors contributing to staff turnoverRole22were lack of methods to orient, integrate, and maintain new staff members,low pay and wide variation for amount and kind of work to be accomplished,and a lack of training and support systems. Price (1984), also states thatsmaller units tend to make staff feel more isolated from colleagues andcareer structures.George and Baumeister (1981) conclude that the turnover problemdocumented in this study is not unique to Tennessee, and that the findingsprovide empirical support to inferences made by others that staff withdrawalmay be a national (and international) problem. George and Baumeister(1981) further state that if the findings in their study are representative ofcommunity residential facilities on the whole, then these are dysfunctionalorganizations, unlikely to fulfil their roles properly.George and Baumeister (1981), however, do not consider the role thatthe residents play in a worker’s decision to stay or leave the group home.Some staff, for example, find it very difficult to work with residents withsevere mental handicaps and aggressive, disruptive behaviours. Other stafffind it difficult to deal with inappropriate sexual behaviours, and many staffare unable to meet the physical demands of working with people who areextremely dependent. In relation to resident characteristics, the mentalhandicaps of the residents were not described in terms of degree and all buttwo of the residents were ambulatory. The findings may not be generalized,Role23therefore, to residents with severe and multiple handicaps in terms of thisvariable. The authors do not describe health care issues other thanbehaviour problems as a factor, and the study is clearly from the perspectiveof psychology rather than nursing.Bersani and Heifetz (1985) investigated potential sources of stressand satisfaction as perceived by direct-care staff members in communityresidences for adults with mental handicaps. They focused on four relativelyunexplored aspects of the work experiences of direct care staff incommunity residences for adults with mental handicaps. These aspectsincluded the staff members’ perceptions regarding sources of stress andsatisfaction, the role that residents play in this, the relationship betweenperceptions of stress and satisfaction, and the relationship of variousbackground characteristics including the degree of residents’ mentalhandicaps.This study clearly indicates that stress and satisfaction are twodifferent entities for staff. Sources of stress included 31 items taken fromresident-related and work-related sources of stress scales. Many of theseitems, such as resident behaviours, and lack of training and support forstaff, have also been identified by people with whom this researcher hasworked. Sources of satisfaction included 37 items from resident-related andwork-related sources of satisfaction scales. This included resident-relatedRole24items such as independence in self-care skills, ability to walk aboutindependently and regular participation in a daily program, and staff work-related items such as opportunities for personal growth, challenge, andrecognition of work, Items were more highly rated, in terms of greatersatisfaction for staff, when resident-related. Sources of job related stressand satisfaction were measured using a 7 point Likert-type scale. Test-retest reliability was determined for individual items and those with areliability coefficient of less than .60 were deleted. The Hoppock JobSatisfaction Blank #5 was also administered. This instrument hasdemonstrated internal consistency and validity.Bersani and Heifetz (1985) found no greater levels of staff stress orlower levels of staff satisfaction associated with residents with priorinstitutionalization or with more severe levels of mental handicaps. Thesubjects however, appear to be chosen by convenience which limitsgeneralizability. The participants are also limited by the criteria of aminimum of three months experience in their current positions. George andBaumeister (1981) suggest that many direct service workers are alreadygone by three months (median length of service for relief workers was threemonths). Therefore, many workers experiencing high levels of stress andlow levels of job satisfaction were likely not included in the study as theyhad already terminated their employment. The study is also limited becauseRole25levels of stress and satisfaction were rated in terms of potential sources ofstress and satisfaction, so the amount of actual stress experienced by thestaff overall and compared to other staff is unknown.One potential source of stress identified by Bersani and Heifetz(1985) was lack of staff training. Savage (1984) suggests that group homestaff should be given an induction course before going into the house andthat regular inservice training should be built into the group home system.This does not appear to be happening, however (Savage, 1984). Georgeand Baumeister (1981) found in their study of staff turnover that stafforientation, preservice, and inservice training was episodic at best and thatjob descriptions were provided to fewer than half of the employees.Staff training in group homes was studied and analyzed by Schinkeand Wong (1977). Following random assignment into experimental andcontrol groups, staff in six Washington State group homes were given 12hours of training in behaviour modification techniques. Schinke and Wong(1977) found that experimental home staff significantly increased theirknowledge level, had better evaluations of their residents, indicated lessdecline in job satisfaction, and had significantly greater increases in thefrequency and duration of positive staff and resident behaviour, as comparedto the control group.Role26Although group homes were randomly assigned to experimental andcontrol groups and 93% of full-time staff participated, the original sampleappears to be conveniently chosen from Washington State group homes. Allgroup home residents were people with mild or moderate mental handicapsand most were involved in full-time employment or day programs outside thegroup home. The behaviour modification techniques taught would likely bemore effective with this group than with a group of people with severe,multiple handicaps because cognitive abilities would be higher.Staff in all homes were reassessed following the training, but thelength of time following the training was not specified. This may make aconsiderable difference to how the questions were answered, particularly inthe assessment of knowledge. Four instruments were used to assessknowledge, attitude, job satisfaction, and naturalistic behaviour. Theseinstruments used are described and interrater differences are addressed, butthere is no discussion of reliability. This study adds to the current state ofknowledge about staff related issues and supports the belief that grouphome staff benefit from training but again, presents a psychological, ratherthan a nursing perspective and addresses behaviourial training only, nothealth related issues.Staff related issues identified in the literature include large turnoverand lack of staff training. One study identified a staff turnover rate of 73Role27percent. In another study, an experimental group of staff, for whichtraining was provided, indicated less decline in job satisfaction, increasedknowledge levels, better evaluations of residents, and increased frequencyand duration of positive staff and resident behaviour, as compared to thecontrol group. Levels of staff stress and satisfaction were explored in onlyone study, which found no greater levels of staff stress or lower levels ofstaff satisfaction associated with residents with prior institutionalization orwith more severe levels of mental handicaps.The Nurse’s RoleThere is also a lack of information in the literature about nursingservices for clients with severe mental handicaps living in the community.The articles reviewed are for the most part narrative and describe whatpeople believe the roles should be, the different models nurses may use toguide practice in this field, and the focus of practice for nurses working insimilar fields.Role theory in general, however, is substantially documented. Nye(1976) states that roles are homogeneous sets of behaviours which arenormatively defined and expected from a given social position. Friedman(1981) suggests roles are refined by the individual and that one person mayRole28carry out a number of roles related to their particular position. Role theoryhas been pulled into many fields of nursing.Many people working in this field believe that nurses can provideservices addressing health related needs for individuals with severe mentalhandicaps living in group homes in the community. The only evidence ofnursing perspectives was found in articles published in Britain, where nursingin this field is a recognized specialty. Most of the British authors suggestthat nurses staff the group homes as well as supervise care. Savage (1984)for example, suggests that to ensure appropriate care, group homes shouldbe supervised by charge nurses and that at least two regular staff should benurses in each group home.Others discuss a more innovative role for nurses than staffing.Darbyshire (1988), editor of Mental HandicaD Nursing, suggests that abranch of nursing which boasts of its interpersonal skills should be devisingmore creative ways of informing and discussing community living. Thispoints to an educative, consultative role for nurses. Darbyshire (1989) latersuggests that we can no longer justify a relationship based on professionaldominance, and must move towards a partnership between individuals. Thisclearly identifies advocacy as another role for nurses. There is also apreventative role for nurses as suggested by Bell and Bhate (1992). Theystate that professional time spent on preventative measures will reduceRole29morbidity associated with obesity in the population and that communitynurses can help.Information looking at different models to guide nursing practice maygive direction for specific nursing roles in this field. Massey (1988) statesthat the medical model loses its rationale in the community and that there isa new opportunity for nurses to dramatically widen their area of professionalcompetence. Massey identifies more appropriate models for communityliving based on psychodynamic theory, family therapy, and learning theory,which imply that the person with a mental handicap is a whole person,basically healthy, who needs to achieve maximum independence. Theseideas are consistent with many nursing models today. For example, theU.B.C. model for nursing views man as a behaviourial system with biologicaland psychosocial needs. This model may be applied to people with mentalhandicaps. They are clients experiencing a critical period where copingbehaviours continue to be influenced by loss that occurred years earlier(Campbell, 1987). This nursing model encompasses all the needs of peoplewith mental handicaps including the biological needs which are of concern toa number of families and professionals, as well as the psychosocial needswhich have been addressed with the social model of care.Orem (1991) views the individual as a whole being, never isolatedfrom his or her environment. Orem suggests that all humans have universal,Role30developmental, and health deviation care requisites. One universal requisiteis the promotion of human functioning and development in social groupsaccording to potential, limitations, and desire to be normal (Orem). Peoplewith mental handicaps may be appropriately cared for using this nursingmodel.The provincial government has implemented community nursingservices for people with mental handicaps. The Ministry of Social Servicesand Housing and the Ministry of Health (1991) state that these nursingservices will be developed and that nurses will monitor and support thephysical and medical well-being of all adults with mental handicaps ingovernment funded resources as well as become the primary link to allfacets of the health care system for these residents. Whether healthpromotion and illness prevention are included in this mandate is not clear.This acknowledges the need for nurses to supervise physical andmedical care in the community but does not recognize many of the othercontributions nurses in this field believe they can make. Kirk (1983) statesthat, in Britain, it is clear that the ideology behind a community service ismost important and that at present, nurses working with individuals withmental handicaps are playing an important role in this area. Blackwell(1979) states that in the United States, although nursing is challenged inthis field to remain a primary resource for effective and creative professionalRole31involvement, a qualified nurse is the most effective professional for homehealth assessment, general support, and basic developmental education.Blackwell (1979) suggests that the challenge further requires a definition ofeffective new roles for professional nursing. Bean (1981) states that manymultidisciplinary community teams have evolved over the years, and thatidentifying the unique components of the nurse’s role is a concern of manynurses working on these teams.No information was found, from a nursing perspective, about whatthe role of a community nurse in this field is in British Columbia. The notionthat nurses deal with physical and medical needs only, as proposed by theMinistry of Social Services and Housing and the Ministry of Health (1991),substantiates this. The proposed nursing positions are integrated into theContinuing Care Division of the Ministry of Health, which traditionally hasbeen comprised of home care and long term care nurses. RegisteredPsychiatric Nurses and Registered Nurses with background, training, andexpertise in this field are now included with the community nurse positions.They will contribute to an important body of information which will be usefulin the ongoing development, and assessment of these nurses’ roles.Due to the lack of information on nursing’s role with this specificpopulation, literature on the focus of practice of community health nurseswas reviewed. The Canadian Public Health Association (CPHA), in a 1990Role32document, discusses community health nursing and delineates the roles andactivities of community health nurses. The CPHA defines community healthnursing as an art and a science synthesizing knowledge from public healthsciences and professional nursing theories. The focus of practice is healthpromotion, illness and injury prevention, health maintenance and communitydevelopment (CPHA). This focus is consistent with nursing having a role inthe health care of people with severe mental handicaps living in thecommunity.The American Nursing Association (ANA) states that healthpromotion, maintenance, education, management, coordination, andcontinuity of care are utilized in a holistic approach to the management ofthe health care of individuals, families, aggregates or groups andcommunities (Stanhope & Lancaster, 1992).The CPHA identifies 12 activities for nurses which may be interpretedas specific roles. These activities include service provider, educator,consultant, facilitator, communicator, resource manager, team member, andresearcher (CPHA, 1990). Many of the roles listed by CPHA are consistentwith those identified in the American literature. The ANA identifieseducation, counselling, advocacy, and management of care as nursingactivities. According to Anderson and McFarlane (1988), the AmericanPublic Health Association focuses on identifying high-risk groups andRole33working with resources to help them through a systematic process whichincludes assessment, planning, implementation, and evaluation. Thisapproach is consistent with nursing services for people with severe mentalhandicaps living in the community. They would be identified as a high-riskgroup. A comprehensive and clearly written discussion of communitynursing roles and the skills required for each, is offered by Spradley (1990).These sources provide guidelines for beginning development of rolesfor nurses working in the community with individuals with severe mentalhandicaps. The nurses working in these new roles are also importantresources. Information provided by these nurses will guide ongoingdevelopment and assessment of these roles.Literature focussing on similar groups was also referenced. Onearticle by Bremer (1987) discusses a needs assessment conducted in Oregonfor the elderly. People that are old and people with severe mental handicapshave many similar health care needs. Bremer states that it appeared, thatwithout professional monitoring of health status, the elderly person’sfunctional level deteriorated and readmission to hospital was likely to occur.While this is probably related to the interventions used as a result ofmonitoring, Bremer points out that the monitoring is important. Hospitaldischarge coordinators cited the lack of in-home monitoring by nurses as theprimary cause of hospital readmission (Bremer). Bremer identifiesRole34nontechnical services (such as assessment, teaching, counselling, andreferral services) as part of the professional role for community nurses.Bean (1981) states that nursing intervention offers a total approach tothe provision and coordination of services for developmentally disabledchildren living with their families. The needs of this group are very similar tothose of people with severe mental handicaps living in group homes.Children with developmental disabilities sometimes have severe mentalhandicaps, and often have conditions like cerebral palsy and epilepsy. Beandiscusses basic components of the nurse’s role in the care of thedevelopmentally disabled child. These are assessing, planning andimplementing nursing interventions, as well as evaluating and revising thenursing interventions (Bean). Bean also states that defining the specificfunctions of the nursing role is an evolving process and that the basiccomponents may need to be redefined in a particular setting. Basicfunctions for nurses working with developmentally disabled children livingwith their families include teaching, supporting, coordinating, counselling,and advocating.Although there was a lack of information in the literature about thenurse’s role working with people with severe mental handicaps in thecommunity, there were narrative articles reviewed which gave somedirection to nursing practice in this field. Most of the British authorsRole35suggested that nurses staff and supervise the group homes. Otherssuggested an educative, consultative role for nurses. One article clearlyidentified advocacy as a role for nurses and a preventative role was alsodiscussed by professionals working in this field. Nursing models provideddirection for using a holistic approach to practice, and the focus of practiceof community health nurses and nurses working with elderly patients andchildren with developmental disabilities specified a number of functions forthe nurse. These functions included providing service, educating, assessing,planning, consulting, facilitating, communicating, managing resources,counselling and researching.SummaryThis chapter has discussed the current state of knowledge aboutpeople with severe mental handicaps living in the community and nursing’srole with these individuals. Literature examining health concerns, staffingissues, and the nurse’s role was reviewed and described. Literature on thefocus of practice for community health nurses and nurses working withgroups similar to people with severe mental handicaps was discussed.Although the literature regarding staff related issues and healthconcerns of individuals with severe mental handicaps living in the community islimited, there is enough evidence to identify significant issues. The state ofRole36knowledge about how nursing can address these issues is largely speculative,but many experienced people in the field believe that nursing services will makea difference.The government of British Columbia has hired nurses to work with peoplewith severe mental handicaps living in the community. Although the roles ofthese nurses are not yet defined, and there is no information on which to basesuch a definition, these nurses will be expected to provide appropriate nursingservices. The perspectives of these nurses, once established in these positions,will provide insight into what their roles are, or could be. This is necessary toprepare for the increasing services which will evolve as the institutions close.Role37CHAPTER THREE: METHODOLOGYThis chapter presents the methods used in the study to collect andanalyze data. Following a brief overview of the research design, the selectioncriteria and procedure for selection of participants is presented. Data collectionand analysis are discussed at length and the procedure used for data analysis isprovided. This chapter is completed with a discussion of reliability and validityof the data and ethical consideration of subjects.Research DesignThis was a qualitative, descriptive study. Given that the purpose of thisstudy was to increase understanding of the role for nurses working with peoplewith severe mental handicaps in the community, a qualitative, descriptivemethod was used. Qualitative methods are used when there is little knownabout a subject of interest or when the research question pertains tounderstanding (Field & Morse, 1985). The major data collection techniques areinterviews, participant observation, and field notes.The research question to be answered in this study is: What is thenurse’s perception of his or her role in working with individuals with severemental handicaps in community residential facilities? Riemen (1986) states thatthe qualitative approach attempts to understand empirical matters from theRole38perspective of those being studied and rationalizes efforts to understandindividuals by entering their fields of perception.The qualitative, descriptive method involves gaining the perspective ofpeople who are involved in the phenomenon of interest; in this instance theperspective of nurses working in the community with individuals with severemental handicaps. It is appropriate to study nurses’ perceptions of what theirrole is from a qualitative perspective in order to analyze the role of nurses in thisfield. The nurse who has experience working with individuals with severemental handicaps who live in the community has the best perspective of whatthe role of a community nurse is in this field. Qualitative description simplycommunicates the insights into human experience (Oiler, 1986).Selection CriteriaRespondents were chosen conveniently, from nurses who were able tospeak about their role in working with people with severe mental handicaps inthe community. As there is little known about the role of nurses working withindividuals with severe mental handicaps in the community, a representative orrandom sample would be inappropriate (Oiler, 1986). The sample shouldinclude the best informants available. Participants were selected if they met thecriteria of currently working as nurses (Registered Nurses or RegisteredPsychiatric Nurses) with clients who have severe mental handicaps living in thecommunity, and were able to articulate in English what the role is for nurses inRole39this field. The nurses were working in either the Health Services for CommunityLiving (HSCL) Program, which is a Continuing Care program described by theMinistry of Social Services and Housing and the Ministry of Health (1991), theIn-School Support Program, or in the community as part of a transdisciplinaryteam.Selection ProcedurePermission to conduct this study was received from the University ofBritish Columbia Screening Committee for Research and Other Studies InvolvingHuman Subjects. I then spoke with the supervisor of the In-School SupportProgram. She referred me to the chairperson of the Research Committee forthe Vancouver Health Department, who requested a summary of the researchproposal, information letter (Appendix 1), and consent form (Appendix 2) to beapproved by the committee.Once the Vancouver Health Department Research Committee approvedthe research proposal, the researcher contacted the coordinator of the In-SchoolSupport Program who discussed participation with the nurses, and distributedthe information letter. The subjects contacted the researcher directly, andplanning for the interviews was then set up between the subjects andresearcher.A similar process was carried out with Health Services for CommunityLiving. The Program Manager of Health Services for Community Living wasRole40contacted, and the research proposal summary and prospective participantletters were forwarded to her. She in turn discussed participation with thenurses who contacted me directly. A Mental Health Unit was contacted andthe same process was carried out to include a nurse who was part of atransdisciplinary team.Sandelowski (1 986) states that sample size in qualitative study cannotbe predetermined because of its dependence on the nature of the data andwhere the data take the investigator. For the purposes and time constraints ofthis thesis, however, it was predetermined that twelve subjects wouldparticipate.Data CollectionData were collected through semi-structured interviews. These are face-to-face verbal interchanges in which one person, the interviewer (researcher)attempts to elicit information from another, the respondent (subject), usuallythrough direct questioning (Waltz, Strickland, & Lenz, 1991). Waltz et al. statethat the interview is often the method of choice to collect research databecause misinterpretation and inconsistency can often be identified at the time,communication can be clarified, and its diversity makes the interview a veryuseful tool.In depth, semi-structured interviews were conducted by the researcher,with trigger questions to initiate responses from the subjects as necessaryRole41(Appendix 3). Semi-structured interviewing is the most appropriate way ofgathering data for a qualitative, descriptive study. The unstructured interview isflexible in that it allows the interviewer to respond to changes and is often usedwhen the respondent’s meanings are important in descriptive and exploratoryresearch (Waltz et al). Waltz et al. suggest that with more structure in theinterview, however, there is less likelihood of interviewer bias. With completelyopen-ended responses, the respondent may answer any way he or she wants.Waltz et al. state that the more structured the response alternatives are, themore reliable the interview. On the other hand, structure may focus therespondent to answer in a way that doesn’t reflect the true response andvalidity may be compromised (Waltz et al). The use of semi-structuredinterviews therefore enhanced both reliability and validity.The trigger questions used were semi-structured as well. Someexamples of trigger questions included: Based on your experience in this field,what are your roles as a nurse in the community, working with people withsevere mental handicaps? or, What kinds of things do you do working in thecommunity with individuals with severe mental handicaps? According to Waltzet al. (1 991) a semi-structured question contains elements of both closed-ended(structured response alternative) and open-ended (no response alternative) typesof questions. The questions used in the study led subjects to provide generalinformation about their roles working with individuals with severe mentalhandicaps living in the community. The questions were also designed to allowRole42the subjects to respond openly, by exploring their ideas and expanding on these.The purpose of qualitative description is to understand what the informants sayand uncover the meaning. Semi-structured interviews and trigger questionsfacilitate this process.The interviews were held at a site chosen by the participants. Ten of theinterviews were held in the health unit where the nurse worked, in a privateoffice or small meeting room. Two nurses came from the Okanagan area of theprovince for the interviews. Their interviews took place at a location of theirchoice. One of these interviews was in a common area at the British ColumbiaInstitute of Technology, the other was in the Board Room of a MSS RegionalOffice.A number of things were discussed with the subjects at the beginning ofthe interview. Subjects were told that participation was voluntary and that ifnow was not a good time for them the interview could be rescheduled.Subjects were told that if they were not comfortable with any part of theinterview it would be erased and that they could withdraw from the study atany time. A brief description of how the interview would proceed was given.Subjects were also told that when they felt they had exhausted theirdescriptions, or when they felt they had nothing else to say on the subject theinterview was finished. Consent forms were also signed at this time. Althoughthere were no requests to erase information, a number of the nurses turned offRole43the tape recorder at points during the interview when they felt they hadexhausted the subject, or needed a few moments to collect their thoughts.The interviews were conducted with no major problems. Questions wereasked by the researcher only when it was necessary to continue the flow ofdialogue. The trigger questions were often rephrased to reflect the immediacyof the interactions. The respondents answered the questions openly and nonverbal behaviour was consistent with verbal responses.It was anticipated that the information flow of the nurses would be quiterapid and according to Waltz et al. (1991) the more rapid the flow ofinformation in an interview, then the more preferable is the use of a taperecorder. In order to improve reliability and validity data should be transcribedand coded as soon as possible after the interview (Waltz et al). Transcription ofthe interviews commenced soon after the interview was taped and field noteswere completed immediately following. These field notes included nonverbalbehaviours, setting specifics and any distractions or difficulties evidenced duringthe interviews. The coding for each interview was completed within a week.Four transcriptions of interviews were shared with the thesiscommittee as a test for the interview process. Field notes were taken and thentranscribed into an “interview process” for each interview. These described thenon-verbal components of the interviews. Any distractions or difficulties duringthe interviews were also noted.Role44Data AnalysisThe data were analyzed using a process of inductive content analysis.Content analysis involves the simplification of recorded language to a set ofcategories that represent the presence, frequency, intensity, or nature ofselected characteristics (Markoff, Shapiro, & Weitman, 1977). Characteristicsof the content to be measured are specified and rules for identifying, coding andrecording these characteristics are applied. According to Fowler (1986), theseare the two key processes involved in content analysis. Content analysis wasused because it was the method most congruent with the purpose of the study.The content analysis was inductive because categories of data evolved duringthe analysis.Waltz et al. (1991) state that content analysis has several features whichmake it a useful measurement technique for nursing research. Analysis isapplied to recorded information and this allows for an exact replay of theoriginal communication (Waltz et al). Content analysis also emphasizes thecontent of the communication, not the process or paralingual aspects andcontent is often emphasized in nursing research (Waltz et al). Detailed codinginstructions or rules to examine the recorded information enhance objectivityand specified criteria are consistently applied in selecting and processing thedata. These two characteristics make content analysis appropriate for drawingscientific conclusions (Waltz et al). The final feature identified by Waltz et al.is that content analysis has a wide variety of potential qualitative applications.Role45All of the above features are important in considering the use of contentanalysis for the qualitative study of exploring and describing the perceptions ofnurses’ roles in working with individuals with severe mental handicaps in thecommunity. It is the content of interviews with the nurses that provided theinformation I needed, not the process, and I taped the interviews andtranscribed them verbatim which allowed an exact replay of the originalcommunication.As well as useful features, there are many advantages of using contentanalysis as a technique for nursing measurement (Waltz et al., 1991).According to Waltz et al. major advantages include information that is easilyaccessible and inexpensive, characteristics that may be studied unobtrusively,information that can be made usable for scientific inference and categories thatare generally developed after data are collected and so do not constrain or biasthe data.Procedure for Data AnalysisContent analysis involves a multistep procedure that is guided by thepurpose of the investigation (Waltz et al., 1991). The purpose of the study wasto explore and describe nurses’ perceptions of their roles, so the contentanalysis procedure was guided by this. The procedure followed was suggestedby Waltz et al.Role46SteD IThe first step in the procedure was to define the universe of the contentor the totality of recorded information about which characteristics would bedescribed or inferences drawn. The universe of content in this study was allthe tape-recorded responses to interviews with nurses working with people withsevere mental handicaps living in the community.Sten 2Step two was to identify the characteristics or concepts to be measuredwhich again was driven by the purpose of the investigation. This was the initialphase of partitioning or subdividing the content, and for this study, theconcepts measured were those responses which identified specific roles orfunctions of the nurse.SteD 3In step three, the unit of analysis to be employed was selected. Iselected themes as the elements to be analyzed. These themes were sentences(or word groups) about the nurses’ roles or functions. The use of themes orsentences requires very little inference, so unitizing reliability was enhanced.The themes were, in most situations, directly taken from the subjects’ words.Significant phrases were highlighted as they occurred in the dialogue andthemes were derived from the underlying meaning of these.Role47Step 4Step four of the procedure was to develop a sampling plan. The entireuniverse was examined in the study, which is generally true when contentanalysis is being applied inductively (Waltz et al., 1991).Steo 5In step five, a scheme for categorizing the content was developed.According to Waltz et al. (1991) this category system is the crux of contentanalysis. This was done inductively by deriving categories from the data.Clusters of similar data were identified then shuffled and sorted as described byStern (1980). Clustered data was used as the basis for forming concepts andthe categories moved from concrete to abstract.According to Waltz et al. (1991) the categories for a given characteristicmust be mutually exclusive and constructed so that each unit of content can beassigned unequivocally to one category. Criteria must be clear and explicit andit is generally recommended that the categories in content analysis be as closeas possible to the original wording to minimize distortion in meaning (Waltz etal). The categories and subcategories derived from the study, in most caseswere very close to the words used by the subjects. In some cases they weredirect quotes or words frequently stated by the subjects.Waltz et al. (1991) suggest four strategies for the nurse to help constructa categorical scheme for content analysis. These strategies were used in thestudy. The first strategy was to carefully read and listen to the availableRole48material to develop a sense of language used and possible data divisions. Itranscribed the interviews verbatim personally and became very familiar withthe data during the process. I then read the interviews over completely, firstjust to get a general sense of the language, and then a second time to start toget a feel for individual categories which I jotted down.The next strategy was to examine existing categorical schemesdeveloped by other content analysts. I reviewed categories of nursing rolessuggested in the literature for nurses working in fields similar to working withindividuals with severe mental handicaps living in the community (Anderson &McFarlane, 1988; Bean, 1985; Canadian Public Health Association, 1990;Jarvis, 1985; Spradley, 1990; Stanhope & Lancaster, 1992).The suggested categories in the literature formed the basis for some ofthe categories and subcategories used in the study. I also added subcategorieswhich emerged from the interview data which were not reflected in theliterature but were activities the nurses stated they spent a lot of time doing.These included “relationship building” and “documenting”.The third strategy for constructing the categorical scheme was to askexperts in the field to evaluate the relevance, clarity and completeness of thescheme (Waltz et al., 1991). This was done through the thesis committee whocritiqued four of the interviews and evaluated the scheme. I also presented thecategory scheme to two other nurses working in the community with peoplewith severe mental handicaps. I asked them to relate the information to theirRole49jobs and both agreed with the categories used. These activities also addressthe final strategy for categorizing using the inductive approach which is to avoidpremature closure and to avoid overly delayed closure by sharing the categoriesand collaborating with others.Sten 6Step 6 of the content analysis procedure was to develop explicit codingand scoring instructions. I developed criteria for processing the content, tryingto be as specific and complete as possible. I prepared a list of categories andcriteria with accompanying key words and phrases to be used as a guide foranalyzing the data (Appendix 4).Step 7The seventh step in the content analysis procedure was to pretest thecategories and coding instructions. I applied the category scheme according tothe explicit instructions to small portions of the first interview. Waltz et al.(1991) suggest at least two coders be asked to analyze the same material inorder to assess interrater reliability and clarify discrepancies. Four interviewtranscriptions were forwarded to the thesis committee with the coding schemeto be pretested. As a result of this, categories were redefined.Steø 8Step eight according to Waltz et al. (1991) refers to coder selection andtraining to assess interrater reliability which must be established before theRole50actual data analysis. I did the data analysis in the study so this step was notapplicable.Stei, 9The final step in the content analysis procedure was to perform theanalysis and code the data according to prescribed procedure. I coded the datafrom the interviews using the category scheme for the entire interview of eachsubject. The themes were quite easy to identify and words and phrases relatingto activities, functions and skills used by the nurse in the job were pulled out ofthe text. One challenge was to differentiate what was essentially feelings,thoughts, and ideas. Occasionally one of the subjects got a little bit off trackand started to talk about what they thought would be good skills or what theyhad thought the job would be. This information, although interesting, was notused because it did not relate directly to what the role was.Most of the themes were coded quite quickly and fit into the categoriesand subcategories well. This was particularly true in the concrete components(assessing, planning, documenting, providing direct care). Some of the abstractthemes were a little more difficult to code. For example, phoning behavioursneeded to be carefully looked at in context. A telephone call could be for thepurpose of relaying information which would put it in the subcategory of9iaison”, or it could have been for the purpose of discussion “teamparticipation”, or giving advice “consultation”. Most times, going back to theRole51text clarified this, but on a few occasions, this needed to be clarified at afollow-up interview.Some of the categories on first glance seemed to overlap. The specificactivities were different, however, when put into context of how the particularfunction was performed, or with whom, and the categories were mutuallyexclusive. For example, participating in meetings was coded “Collaboration:Subcategory team participation” if this was a team meeting. When the meetingwas to do informal problem-solving it was coded “planning” or “teaching” if thenurse was providing information to the group either informally of formally in aneffort to increase their knowledge.Priorizing and using time efficiently when working with client needs wascoded “planning”. When this was done for the nurse him/herself to collaboratewith others, it was coded “consultation”. A visit with the client to the doctor’soffice was coded “Support: Subcategory relationship building” if it was used tolet the client know the nurse was there for him/her. When an informal sessionon community living philosophy was required with the physician this was coded“teaching” or “planning” if the nurse worked with the client and physician atthis time in a cooperative effort to meet the needs of the client.Communication with health care professionals and community resources oragencies was coded “Collaboration”. Communication with clients andcaregivers was coded “relationship building” or “teaching” when specificknowledge was provided.Role52After coding each interview, I periodically went back to the previousinterviews and recoded sections of data from them to increase intraraterreliability. After the first interview was analyzed using this procedure, interviewprocess and field notes were examined and the categories were integrated intoan exhaustive description for each interview. A follow-up interview with thesame subject clarified and validated information. New information from thesecond interview was analyzed in the same manner as the first interview. Asecond subject was then added to the study. This second person wasinterviewed twice, as above, and data were analyzed by the same method. Thedata from the second respondent was then compared with data from the first.A third respondent was then added to the study and more data wascollected, analyzed, and compared with that of the previous respondents. Thisprocess, with repeated interviews to clarify and validate (for the first foursubjects), and repeated analysis, continued until all twelve interviews wereanalyzed. Data gathering and analysis were done continuously andsimultaneously throughout the study. Recurrent themes were grouped togetherand categorized according to the category scheme. An exhaustive descriptionsummary of the nurses’ roles completed the data analysis.Reliability and ValidityIn content analysis both the consistency in identifying the units to becategorized (unitizing reliability) and the consistency in assigning units toRole53categories (interpretive reliability) are important (Waltz et al., 1991). Accordingto Garvin, Kennedy, and Cissna (1988) adequate unitizing reliability is aprerequisite for adequate interpretive reliability.Unitizing reliability refers to consistency in the identification of what is tobe categorized across time and judges (Garvin et al., 1 988). In general, the lessinference required, the greater the specificity, the more exhaustive the codingsystem, and the greater the ability of the data to be examined repeatedly, theeasier it is to establish unitizing reliability (Waltz et al., 1991). The use ofthemes in the study enhanced unitizing reliability as well as the use of wordsfrom the interview data as categories. Themes or phrases and sentences takenfrom the direct dialogue required very little inference. The criteria for codingand classifying data were clear and explicit, and examples and key words weregiven to increase unitizing reliability as well.Interpretive reliability refers to the consistency with which data iscategorized and meaning assigned to it (Garvin et al., 1 988). It is the basis forintrarater and interrater reliability. Interpretive reliability encompasses theextent to which coders consistently use coding systems across all categoriesand the extent to which coders use a given category with consistency (Garvinet al., 1 988). Interpretive reliability in the study was high because the coderswere consistent in using the categories. The coding scheme for the study wasclear and criteria was described with examples and key words and phrasesRole54given. Consistency was demonstrated between the author, the two communitynurses and thesis committee.Unitizing and interpretive reliability are both important in establishingmore traditional types of reliability such as stability reliability which is assessedby interrater and intrarater testing techniques (Waltz et al., 1991). Waltz et al.state that stability reliability is relevant for content analysis and requires cleardelineation of units to be categorized and rules for assigning them to categories.These requirements were met in the study. Interrater reliability was improvedby sharing interview data with the thesis committee for coding. Lynn (1 985)states that the investigator working alone should periodically assess intraraterreliability because it tends to decline over time and fatigue, boredom, andconcurrent experience may influence coding. lntrarater reliability was improvedin the study when I periodically went back to recode previous data.Krippendorff (1980) states that validity in content analysis refers to thedegree to which analysis process variations correspond to variations outside theprocess and whether the real phenomena in the context of data is represented.The interviews were validated and clarified individually, face-to-face, followingthe analysis of the first four interviews. This was determined by the thesiscommittee to be sufficient to establish validity. The people having theexperience were able to immediately recognize it from the descriptions as theirown. This fulfilled the requirement of credibility which, according toSandelowski (1986), is the criterion against which the truth value of qualitativeRole55research is evaluated. Internal validity in the quantitative sense is generallyinapplicable because there is no testing of subjects. The study will be given toother nurses in the field to read. Credibility will also be established if theseother readers can recognize the experience.The three major threats to validity in qualitative research are researcherbias, overweighting elite stories, and making the data look more congruent thanthey are (Sandelowski, 1986). These threats were managed throughbracketing, checking for representativeness of the data as a whole, and usingdifferent data sources. Clear coding instructions increased the objectivity ofdecisions, data were not weighted, and frequency of responses was nottabulated. Credibility and fittingness were also achieved by these measures.Credibility and fittingness occur when findings can “fit” into contexts outsidethe study situation and findings are viewed as meaningful and applicable interms of readers’ own experiences (Sandelowski, 1 986).The study was shared with the thesis committee and the data analysisand findings will be forwarded to the Ministry Planning Committee. This fulfilsthe requirement of auditability which is when another researcher can clearlyfollow the decision trail used by the investigator of the study and arrive at thesame or comparable conclusions. This is the criterion which relates toconsistence of qualitative findings (Sandelowski, 1 986). In order to achieveauditability, I described a clear decision trail. I also described and justified whatRole56was actually done throughout the study and analysis, and why. This includedhow the data were transformed and categorized.Another threat to validity is the researcher’s inability to maintain distancefrom the experiences required to describe or interpret them in a meaningful way(Sandelowski, 1986). My own personal and theoretical bias on the generationand analysis of data was limited through the process of bracketing. I set asidein writing my own perspective of what the role of nurses in this field is, workingin the community with people with severe mental handicaps, at the beginning ofthe study and tried not to impose this prior knowledge on the emerging data.Once the trigger questions were developed and prior to the interviewstaking place, I employed bracketing in an attempt to limit personal bias (Woods& Catanzaro, 1988). To increase the reliability of the study it was important torecognize that, as part of the interviewing process, I influenced the interview,regardless of what I intentionally said or did. Therefore, bracketing was doneonce, before the first interview of all the interviews commenced. I wrote downmy own thoughts about what I think the roles for nurses are working withindividuals with severe mental handicaps who live in the community.As I was involved with the development of the service delivery plan forthe HSCL program, I think it is also necessary to list the roles which wereidentified as a starting point for this program. These roles include assessment,planning, case management, client advocacy, consultation and support, directRole57care, health teaching, liaison and monitoring. After completing this bracketing, Iput the information aside and started to plan for the interviews.According to Waltz et al. (1991) interpersonal factors in an interview•may have an influence on data collected as well. One such factor is therelatedness to the interviewer of the subjects. For example, if the subject feelsa common bond with the interviewer, Waltz et al. state that the flow ofinformation will be enhanced. I have many years of experience working withpeople with severe mental handicaps and was involved with the planning of theHSCL program. All of the respondents were aware of this and informationseemed to flow easily during the interviews.Other interpersonal factors include a sense of trust by the respondenttowards the interviewer, the interviewer’s ability to listen and showattentiveness to the subject, and the congruence of the interviewer’s non-verbalbehaviours with what is being said during the interview (Waltz et al., 1991).Being aware of these factors, I tried very hard to actively listen to what thesubjects were saying and establish congruence throughout the interviews.According to Waltz et al. (1 991) timing, duration, and scheduling alsoinfluence the interview. If the respondent is feeling rushed, or is in the middleof a busy day with other commitments, the information flow is impeded.Interviews were all scheduled by the subjects in an effort to control thesevariables. There were no time constraints. When the informants felt they hadfinished or exhausted their descriptions, the interviews ended. Most of theRole58interviews were about 40 minutes in length and all were scheduled at one hourso it is unlikely that the respondents were feeling rushed.Ethical ConsiderationsIn addition to the process outlined in the Selection Procedure, the rightsof the research subjects were addressed in a number of ways. Prospectiveparticipants were identified and contacted by their supervisor. Each prospectiveparticipant received an information letter on UBC letterhead from the supervisor.The supervisor enquired if the nurse was interested in participating in the studyand directed interested nurses to contact me directly.Once initial contact had been made with me by the prospectiveparticipants, they were informed that they would be required to sign a consentform at the interview. They were also informed of the procedure, purpose ofthe study, and my interest to forward the findings to the Ministry PlanningCommittee. They were assured of privacy and confidentiality.Subjects were told that they could withdraw from the study at anytimewithout jeopardizing their employment, and that participation was voluntary.Participants were also told that the interviews would be taped and that anyresponses could be deleted from the study at anytime if they were notcomfortable with them.The interviews took place in a room and location chosen by the subject.Consent forms were signed and interviews were taped. These tapes were onlyRole59shared with thesis committee members. The tapes were erased when the studywas completed.No risks related to participation in the study were identified so it was notnecessary to inform subjects of risks as planned to protect their rights. Thebenefit of being able to give input at the early stages of the ongoingdevelopment and assessment of the roles for nurses, working with people withsevere mental handicaps in the community, was discussed with each subject.SummaryChapter three discussed the research methods used in the study. Thestudy design, selection criteria and procedures for the selection of participantswere presented. Data collection and analysis were discussed at length and theprocedure which was used for data analysis (content analysis) was provided. Adiscussion of reliability and validity followed, along with ethical considerationsof subjects.Role60CHAPTER FOUR: FINDINGSThe purpose of this study was to explore and describe nurses’perceptions of their role in working with individuals with severe mentalhandicaps who live in the community. Twelve nurses working in thecommunity with people with severe mental handicaps participated in in-depthinterviews about their roles. These were recorded then transcribed verbatimand analyzed. This data provided a rich base for examining and describing thefunctions of community nurses working in this field. This chapter describes thedemographics of the participants and presents the findings from the interviews.Description of ParticipantsTwelve nurses, two male and ten female, participated in the interviews.The ages of the nurses ranged from 28 to 52 years, with the mean age being42 years. Each nurse worked in one of three different government nursingprograms which provided services for people with severe mental handicapsliving in the community. Length of employment in the present position,educational qualifications, and experience working with individuals with severemental handicaps varied among the nurses.The length of time spent in their present jobs ranged from two months totwo years at the time of the interviews. The average time was a little overseven months. Length of time varied according to the specific programRole61involved. Some nurses worked with children and others with adults; in additionto a severe mental handicap the client may also have a physical handicap,mental illness, or other complex health problem. Despite this, the clients as agroup experienced similar needs.Two nurses worked for the In-School Support Program. The In-SchoolSupport Program provides support services to enable the integration of childrenwith special needs into the public school system (Bard, Jiminez & Tornack,1993). Program planning for In-School Support commenced in 1989 andimplementation was completed in 1 991 (Bard, Jiminez & Tornack). The twonurses interviewed worked specifically with children who had mental handicapsand often physical handicaps as well. One of these nurses had been working inthis program for two years, the other for one year.One nurse worked in a Mental Health Centre as part of a transdisciplinaryteam providing services for adults of all ages with mental handicaps andconcurrent mental illnesses. This program was first established in January,1 992 and this nurse had been working with dually diagnosed adults living in thecommunity since this time. The remaining nine nurses who participated in thestudy were working in the Health Services for Community Living (HSCL)Program, which is part of the Continuing Care Division of the Ministry of Health.This program provides nursing and rehabilitation services for adults of all ageswho, for the most part, have moved from the institutions and are now living inthe community. Many of these people have severe mental handicaps andRole62complex health care needs. Two of these nurses were working with VancouverMetropolitan Health Services and seven were with the Provincial Program.Nurses were first hired into this program in June, 1 993.Educational levels varied. All of the nurses interviewed in this study hada diploma in nursing (psychiatric or general) and all were registered in theprovince of British Columbia to practise nursing under the Nurses (Registered)Act (1979) or the Nurses (Registered Psychiatric) Act (1979). Eight wereRegistered Nurses (RN5) and six were Registered Psychiatric Nurses (RPN5).(Two were dual-trained and registered as both). The two nurses working in theIn-School Support Program were RNs with degrees in nursing. The two nursesworking in the Vancouver Metro HSCL Program were also RNs. One of thesenurses had a BN, the other had a diploma in public health and was four coursesshort of a BSN.The seven nurses working in the provincial HSCL program had varyingeducational qualifications. One was dually-trained (RN and RPN), had a BSN,and was well into a Masters (MSN) program. Another of these nurses was alsodually-trained and working on a diploma in Advanced Psychiatric Nursing whichleads to a degree in Health Sciences. Two of the provincial HSCL nurses wereRNs and three were RPNs with a basic diploma only. The nurse working in theMental Health Centre was an RPN with a diploma in working with people withmental handicaps (from the United Kingdom), and held a BA in psychology andRole63sociology. Some of the nurses had attended other courses, workshops, andconferences.Previous experience working with people with mental handicaps alsovaried among the nurses. For example, the two nurses working in the In-SchoolSupport Program had very little experience in this field. Their experiences werefrom the fields of paediatrics, acute care, orthopaedics, and paramedics. This isunderstandable because, until recently, most people with severe mentalhandicaps lived in government institutions. Even when they required acute careservices, staff were always sent with them to hospital to provide continuity ofcare. It is quite likely then, that nurses would not be exposed to people withsevere mental handicaps during acute care employment. The In-School SupportProgram is part of the Preventive Community Health Division and as such hiresonly Registered Nurses (RNs), preferably with a baccalaureate degree in nursing(BSN). The institutions have been traditionally staffed primarily with RegisteredPsychiatric Nurses (RPNs), therefore it is not likely that nurses with experiencein this field would have applied for these jobs (or would have met the eligibilitycriteria).Previous experience of the nurses working in the HSCL Program varieddepending on whether they were associated with the Vancouver Metropolitan orthe Provincial Program. The two nurses working in the Vancouver programwere doing a special pilot project to introduce the HSCL services through theHome Care program and had no experience working with people with severeRole64mental handicaps. It was decided that a pilot project would run and beevaluated prior to full implementation. These positions were therefore filled bytwo nurses from Home Care and their previous experiences were predominantlyin Home Care and practice with the Victorian Order of Nurses.All but one of the nurses working in the provincial HSCL Program hadconsiderable experience in the field, ranging from ten to 25 years. Most of thiswas institutional experience, although one of these nurses had worked as asocial worker and support team member, and another had supervised grouphomes. The nurse who did not have considerable experience in this field, hadexperience working in and managing community facilities for people with mentalillness and multiple sclerosis. The nurse working in the Mental Health Centrehad 20 years of experience working with people with severe mental handicapsin institutional settings. Ten nurses interviewed were working in Health Units inthe Lower Mainland or the Fraser Valley. One HSCL nurse came from Vernonfor the interview, and another came from Kelowna.In summary, the mean age of participants was 42 years, educationallevels varied from RPNs to BSNs, the average time spent in this job was sevenmonths and previous experience with persons with severe mental handicapsranged from no experience to 25 years.Role65The Role of the Nurse Working with People with Severe MentalHandicaps in the CommunityThree distinct categories of information emerged from the data. Thesecategories can be divided into major functions of the nurse in this setting.These functions or roles include collaboration, support and teaching/learning.Collaboration includes activities where the nurse worked jointly with others in acooperative effort. Support refers to activities which were used to assist orsustain client health, as well as caregivers or others in their decisions orpositions and teaching/learning includes all activities related to teaching othersas well as self-learning. Figure 1 lists the three categories and thesubcategories which emerged from the data collected in the study.1. Collaboratea) consultationb) liaisonc) team participation2. Supporta) advocatingb) assessingc) documentingd) planninge) providing direct caref) relationship building3. Teachingllearninga) teaching othersb) self learningFigure 1: Categories and Subcategories of the Nurse’s RoleRole66The functions are closely related to one another and many of the themesencompass more than one category. For example, the nurse must assess theclient before a care plan can be developed. Collaboration with clients,caregivers, and others is necessary to complete a comprehensive assessment,particularly when the client is non-verbal. The functions coalesce to form aholistic sense or essence of the nurse’s role in working with individuals withsevere mental handicaps living in the community.Figure 2 presents the holistic view of the role of the nurse working withpeople with severe mental handicaps who live in the community. Figure 2 alsoincludes four activities which, although not classified as specific functions,were necessary to carry out the components of the job. Travelling, timemanagement, communication, and interpersonal skills were threaded througheach of the nursing roles identified.No specific quantifiable data was collected about the relative importanceand time spent on each individual function, so functions cannot be ranked inorder of perceived importance or amount of time required. The informationcollected was to describe and explore roles only. The categories, therefore, arepresented in alphabetical order. Despite the absence of researcher intent toidentify role importance and time spent, participants spontaneously noted majorroles, subcategories, and time spent with some activities. These will be notedin the presentation of findings.Broken lines illustrate the flow through of themes.Figure 2: The Nurse’s Role Working with Individuals With SevereMental Handicaps Living in the CommunityRole67IICollaborationITeaching/LearningICommunicationInterpersonal SkillsTime ManagementTravellingI0-p-ISupportRole68The Collaborative RoleCollaboration included activities where the nurses worked in conjunctionwith others in a cooperative effort. All of the nurses spoke of collaborativeactivities many times throughout the interviews. These activities included:consultation, liaison, and team participation. The nurses collaborated with alarge number of people including clients, caregivers in the schools and grouphomes, families, hospital staff, supervisors, other health professionals, andcommunity resources.ConsultationConsultation was a major part of the collaborative role and includedactivities where the nurses were providing information intended to influenceothers in decision-making. Nurses reported consulting with caregivers in theschools and group homes about approaches to client care. The nurses, forexample, reported that people working directly with the clients were oftenasking for assistance around seizure management and medication requirementsfor clients. The nurses also consulted with caregivers about other topics likepersonal hygiene and how to prevent infections. Safety was also an issuediscussed by many nurses.Many of the HSCL nurses stated they responded to requests ofcaregivers rather than just going into group homes. Many of these nursesfound this frustrating because the group home operators or service providersoften did not recognize the value of their service. The nurses were also awareRole69of many group homes which did not request their services. The nurses wereconcerned about client health in these group homes. One nurse believed it wasimportant to get out into the community and find clients rather than let themcome to him, and although case finding was not identified as an activity by theother nurses, many of them had only a few clients and felt a need for more.Consultation was also done with program staff before clients wereplaced into community programs on issues such as whether the client would becapable of working full-time or fully managing his financial affairs. Nursesspoke of needing skill to consult with others in a way that was non-threateningto them and did not discredit what they were doing. Consultation withcommunity resource people was for the purpose of gathering and sharinginformation related to services for clients with severe mental handicaps. Thenurses consulted with physicians, School Boards, various teams, hospitals,advisory committees, society and community agency staff about resourcesavailable for clients to help meet their nutritional, dental, and communicationneeds. Many of the nurses referred to this part of the job as “coordinatingpeople and resources”.Other consultation activities included making referrals to otherprofessionals, directing others through problem-solving activities, and organizingtime and resources. Many examples of these activities were expressed. All ofthe nurses reported that they made referrals for clients to other health careservices. This was identified by most as a component of “case management”Role70or taking responsibility for clients and their care. Referrals most frequently donewere to occupational therapists, behaviourists, nutritionists, speechpathologists, and hearing or seating (wheelchair) clinics. Some nurses identifieda “coordinator of services” function which was similar to case management.These nurses consulted with others to manage the health care of their clients.LiaisonLiaison was also identified as a function performed by all of the nursesinterviewed and included activities for communicating information betweenstakeholders. Each nurse identified specific people with whom they liaised:clients, caregivers, families, and physicians as well as different communitygroups, agencies, and resources.The nurses, for instance, liaised with families and between the Ministriesof Social Services and Health to ensure all information pertinent to clients wasprovided so required resources could be obtained. All of the nurses said thatthis aspect of the job took a great deal of time. Most discussed spending hourson the phone ensuring information was passed along, so that appropriateservices and care could be provided for clients. Other groups liaised withregularly were other nurses at the health units, various teams, societies, andprofessionals. The groups reflected the specific needs of the individual clientsand, as client needs were often complex, these groups were often numerous.Role71Team ParticipationAnother subcategory of collaboration, which was discussed by all thenurses, was team participation which included all activities where the nursesattended meetings, gave input, and worked together with other health careprofessionals as a member of a team. All of the nurses reported attending a lotof meetings. The meetings occurred with various teams of professionals,caregivers, and others.The nurses did not discuss specific agendas for meetings but did describesome activities which took place during some meetings. For example, somenurses discussed a collaborative process of meeting with co-workers as a teamto put problems on the table. The problems were discussed individually andteam members were expected to suggest ways of dealing with the problemfrom their own perspective. The nurses felt it was important to put forwardtheir own view during these meetings and also to be “moderate” whendecisions were made. For example, the nurses would often accept the middleground or what provided a reasonably safe environment in order to address therights of the client to take certain risks, rather than having a totally safeenvironment that was risk-free. Some of the nurses found this difficult. Thenurses also found it difficult to adhere to medical issues because they felt thiscontributed to fragmentation of client care. They were used to having a holisticview of clients, but now they felt they were only listened to when discussingRole72the medical aspects of care. The client was divided into compartments andeach team member was only to be concerned with their one compartment.The nurses attended other meetings as well. For example, one nursetalked about “organizing the Lower Mainland group” of HSCL nurses andrehabilitation therapists, and described a number of committees she hadparticipated in including a transfer of function committee, the Lower MainlandAdvisory Committee on Persons with Handicaps, and meetings with grouphome managers. These same committee meetings (in different regions) wereattended by the other HSCL nurses as well. Other committees identified inwhich there was active participation by many of the nurses included HSCL teammeetings, staff meetings, hospital liaison meetings, health unit meetings,Mental Health Team meetings, and Personal Service Plans (PSPs). One nurse,for example, stated “if we have a client in hospital and his needs have changedhe’s not going back to the same facility, we would be part of that plan(PSP) as to where’s the best place” for him to go.Meetings with hospital staff were not consistently described by thenurses. Some nurses stated they attended many hospital meetings and othersdid not. Many of the nurses discussed committee membership and participationas a significant part of team building and collaboration. Two of the nurses,however, were restricted even from visiting clients in hospital by theirsupervisors. Some of the nurses were also involved in discharge (from theinstitutions) planning and community meetings. One nurse stated she hadRole73“involvement in the community on absolutely every level possible” and wasasked to bring her clientele into the community picture. She found thisfascinating “to be involved in processes that actually bring about change”.In summary, the collaborative role involved working in conjunction withothers in a cooperative effort which included activities of consultation, liaison,and team participation. The nurses all stated that collaboration was veryimportant and many found this the most challenging and difficult part of theirjob. Some nurses also stated collaboration was very rewarding and exciting.The Support RoleSupport included activities related to maintaining the health of clients ormeeting the needs of clients and maintaining caregivers in their roles. Thisincluded subcategories of advocating, assessing, documenting, planning,providing direct care, and relationship building. Each of the twelve nursesinterviewed identified these components of their role and many of the activitieswere the same for all of the nurses.AdvocatingAdvocating referred to activities which focus on pleading the cause ofothers, more specifically to represent clients and caregivers in receivingappropriate services. The nurses advocated for clients, for the most part,around health issues.Role74Main themes discussed by the nurses included obtaining social servicesfor clients, ensuring appropriate or adequate health care services, and lookingout for clients’ safety and well-being. Some of the nurses found the advocatingrole challenging when it involved physicians because the physicians oftentreated clients with severe mental handicaps differently than clients from thegeneral population. One nurse related a couple of incidents where treatmenthad been withheld because “after all what did it matter they are notnormal”. Another discussed an instance when a client had a lump that grouphome staff were very concerned about and “the doctor just decided he didn’tthink it was worth pursuing”. She found it difficult to go against what thedoctor was saying but felt it very important to pursue this “in the client’s bestinterest”. Most of the nurses told similar stories.A major problem related to advocacy that was identified in this studyoccurred when the nurse clearly recognized a health issue but this was notaccepted by the caregivers. Most of the nurses discussed situations where thisoccurred and they believed the client was living at risk. One nurse, forexample, was very concerned about a dysphagic client who had been assessedat the regional swallowing clinic. The recommendation from the clinic was thatbecause of a fixed joint and high risk of aspiration, the client not be fed orally.However, this woman was being fed orally by other clients as part of a dayprogram. The nurse felt the client was in a very dangerous position yet wasunable to do anything about it. Similar stories were told by other nurses whoRole75identified health concerns which were not believed or taken seriously by thecaregivers.Sometimes the nurses’ advocating extended to representing caregivers orfamilies as well as clients. One nurse also discussed helping caregivers to gainaccess to specialist and specific health services. Another assisted her clients’family by contributing information on their behalf to ensure respite care. All ofthe nurses saw advocating as a very important part of their job, yet difficult attimes. They all expressed a great deal of satisfaction when their advocatingefforts were successful, and believed their advocating function to be verydifferent from that of Social Services. Social Services is responsible for fundingso must consider costs incurred as well as availability of resources whenproviding services for clients. The nurses did not need to focus on costs andavailability. As one nurse said “I can advocate directly for the needs of myclients, I can focus directly on what the needs of a particular client are”.AssessingAll nurses identified assessment as an activity they did as part of the job.Assessment referred to assessing health care needs of clients and “gettinginformation” through a formal process. This process varied a little among thenurses but all of the nurses did assessments with clients regularly in order toget the necessary information to draw up a care plan. In conducting theseassessments, nurses noted the importance of good observational skills,particularly for nonverbal clients.Role76Gathering information about client medications and whether they weresuffering from the side effects of the medications was specified in one nurse’sdiscussion of assessment. She stated that she was getting verycomprehensive, specific data about the medical needs of the child. Somenurses included assessments of clients’ psychosocial needs, behaviours, andenvironment as well, as part of their holistic perspective of their clients.Another aspect of assessing was related to caregivers’ competencies.Many of the nurses saw the caregivers as part of their clients’ environment.The incompetencies of the caregivers directly influenced the health of clientsand this created an ethical problem for the nurses. One nurse, for instance,spoke about “the uneducated caregivers”. Another stated “the people in thegroup homes really don’t even have any idea how to take a temperature or givea pill”. One nurse assessed physicians as well when she noted that “some ofthem are really frightened of the clients”.Working cooperatively with others was also identified by all of the nursesas part of assessing clients’ needs. The nurses worked with others in order tocollect the data necessary for assessment. The data were directly related toclients’ needs and the nurses worked collaboratively with caregivers, families,and physicians as well as clients to collect information. All of the nurses statedthat it was important to spend time with clients. As one nurse said “you can’tmake assessments unless you spend time with clients”. Specific activities withclients differed. One nurse discussed family planning with a client who hadRole77recently delivered a baby. Another had many sessions with clients dealing withinappropriate behaviours, pointing out inconsistencies and helping them to“express their actual symptoms”, and do things like keep simple health records.DocumentingThe word “document” was also used by all of the nurses and groupedactivities which related to the written components of the job. Many of theseactivities were the same for all of the nurses. For example, all of the nursesspoke about writing up assessments, writing findings and progress notes inclient records (or charts), and care plans. Other commonly cited writtenactivities were filling out forms, making records, and keeping diaries. The In-School Support nurses spoke about getting consents necessary to certifyspecial education assistants (SEAs) to the care plan. This involved a processwhere skills were learned, and both the nurse and SEA signed a document toreflect this. The HSCL nurses stated they were required to do a lot of additionalpaperwork for this new program. One such nurse stated “we have forms andtracking, that we have to do for HSCL” which included time and travel.Many of the nurses expressed a dislike for this written version of the jobbut all recognized documenting as an important activity. Only one nurse singledthis out as her “last priority” but clarified that this was because she hated doingit, not because she didn’t think it was important. Another nurse stated that ahighlight of the job was to “get through everybody’s paperwork”. Most of theRole78nurses agreed that the paperwork was extensive and time-consuming. Onementioned that this was “more than in any other job I’ve ever had”.PlanningPlanning was done by all of the nurses interviewed in terms of sortingdata, identifying client health care needs and issues, identifying servicesneeded, identifying and solving problems and developing, and updating careplans with interventions. All of the nurses were involved in developing careplans and working from these. Working with others was an important part ofplanning too. The nurses developed their care plans with a lot of input fromclients, families and caregivers, and activities to facilitate this were plannedaround the schedules of these other stakeholders. The nurses workedcooperatively to assist group home staff to address the needs of their clients.All the nurses interviewed spent time going back to group homes after the careplans were implemented to discuss areas of concern and explore how staffcould deal with problems that arose. Most of the nurses identified needs ofclients with the clients and caregivers, and developed strategies for care withclients and caregivers as well.Another theme expressed by each of the nurses with regards to planningwas health promotion and illness prevention. This was a very generalstatement made by the nurses, none of which gave any indication of whatspecifically they did in way of health promotion or illness prevention. Thenurses planned interventions, juggled priorities, made judgements, and usedRole79time efficiently in terms of client care and needs. The two nurses involved inthe In-School Support Program were responsible, f or example, for categorizingtheir clients into levels which reflected required health care needs.Providing direct careThis component of the support role included all activities where thenurses interacted directly with clients. Providing direct care varied among thenurses. Some of them performed specific nursing procedures on clients, otherscounselled clients, or did behavioural or cognitive therapies with them. Most ofthe nurses did not do a lot of “hands on” care and did not feel it was animportant part of the job. Three nurses, however, did a lot of direct careprocedures with clients and some of the other nurses suggested that in futurethis aspect of their role would probably increase.The most frequent psychomotor skills or procedures done with clientsinvolved giving injections, changing dressings, catheterizations, and other basicnursing skills used for assessments like taking blood pressures, temperatures orweights. Some of the nurses stated that they did use these skills, but only in ateaching capacity to demonstrate to the caregivers how a specific procedurewas done. Psychological aspects of direct care were also performed by someof the nurses. These included visualization relaxation techniques, self-hypnosis,behaviour modification programs, and rational-emotive therapy as well ascounselling.Role80The direct care data provided by the nurses were very inconsistent interms of the number of direct care activities, the types of direct care activities,and whether or not the nurses felt direct care was part of their role. Somenurses working in the same program, even in the same area, were verypolarized on this function. For example, one HSCL nurse working in the LowerMainland was doing a lot of hands on and stated “I think as time goes on I’ll bedoing more direct care as well”. Another HSCL nurse, in the same area, statedemphatically that she did not see this as part of her job, except in certainextenuating circumstances. She described one such circumstance when aclient required dressing changes and was in a temporary community placementwith alternating caregivers. The nurse felt it was easier for her to do theseprocedures herself than try to teach an ever-changing group of temporary staff.The nurses also had different understandings about what direct caremeant. Some nurses stated that they did not do much direct care but went onto describe situations where “hands on” activities were considerable. Forexample, one nurse stated “I am doing no direct care” and then went on todescribe giving injections and using cognitive therapies with clients.The nurses also expressed varying degrees of comfort with direct care. Somenurses were clearly uncomfortable with the psychomotor skills and interactingwith clients. They stated they were novices in the field and needed to upgrade.Others were very comfortable doing nursing procedures and were frustratedthat they had to spend so much time in meetings and couldn’t do more. OneRole81nurse, for example, stated “I like to be hands on”. She identified the hardestpart of her job was not doing direct care because, in her words, “I’d do a lotbetter job with the clients”.Relationship BuildingThe final subcategory for support was relationship building.Relationship building activities were those done by the nurses in an effort toestablish and maintain a positive working rapport with caregivers, physicians,families, clients, and others. The most frequently mentioned relationships werethose with clients and caregivers. The nurses spent time just being there,empathizing, listening to, and hearing clients and caregivers. They were alsohelping or facilitating people in their positions working with clients all the time,supporting decisions and listening to complaints. The nurses described this as asupportive role to keep staff and clients “in place and happy”.Relationship building also included those activities which promoted ormarketed the nurses and/or the programs they were working in, or publicrelations. The term “public relations” was mentioned specifically by only two ofthe nurses interviewed, but most of the others did talk about letting peopleknow what they had to otter. Most of the public relations work was done withservice providers, social workers, and clients. The main theme of publicrelations discussed by the nurses was difficulty marketing something that wasnot wanted. As one nurse stated “one of the toughest and hardest things toRole82deal with is trying to sell service that people could benefit from in which theydid not see any value”.Some of the nurses suggested a possible reason for people not wantingthem in their homes. They said there were many misconceptions in thecommunity that the nurses were part of the government Licensing Board. Theservice providers were afraid to let the nurses into their homes because theythought the nurses were looking for licensing infractions which would result inclosure. The nurses believed the misconceptions would “go on for some time”so public relations work was an important aspect of their job.The nurses wanted to let caregivers know that they were around to helpand explained what they had to offer in terms of service. Some of the nursesfound this difficult and attributed this difficulty to personal shyness. Thesenurses sent letters to caregivers describing their program and role. Other nursesstated that they found it very frustrating when people only came to them forhelp with medical problems. They felt they had a lot more to offer in terms ofproviding a holistic approach to client care. This included addressing theclients’ psychological and social needs as well as the physiological needs.Specific therapeutic communication skills most frequently used inrelationship building were active listening, empathy, caring, and warmth. It wasalso important for the nurses to gain trust and be non-judgemental. One nursestated the most difficult part of her job was “keeping my mind broad enough tobe able to hear the people who don’t think the same way as I do”. OtherRole83nurses also felt that establishing relationships was the most difficult part of thejob. As one nurse put it “the biggest thing is getting on track with thecaregivers and just getting to know the community base”. Another stated thatthe most challenging part of her job was “getting in the front door”. Thischallenge was expressed by many of the nurses.Once the initial contact was made, the nurses spent time just chattingwith people to get to know them. Some of the nurses kept records of staffnames so they could personalize conversations. Maintaining the relationshipsoften required good listening skills as many of the caregivers wanted to discusstheir concerns and issues about different aspects of care. As one nurseexplained “I spend a lot of time just gaining trust”. She gave “them (caregivers)a lot of positive reinforcement in what they’re doing and let them know that I’maround if they need help”. All of the nurses made similar statements. One, forexample, mentioned that “we do (a lot of) allaying peoples’ fears”. The nursesfelt it was important to let the caregivers know that they were capable ofperforming the job and that they were not alone. As one nurse put it “there’ssomebody out there if they run into trouble we’re there”.Relationships with clients also presented challenges for the nurses.Some clients were frightened of strangers so it was important for the nurses tokeep their distance and be aware of personal space requirements for theseclients. One nurse stated that “sometimes on the first visit, I would just meetthe person .... to try to gain some trust”. Another, while discussing transfer ofRole84function (the takeover of nursing services from another program), mentionedthat she was spending a lot of time getting to know the eight clients that wereinvolved, meeting with them informally as well as formally.Many of the other nurses also talked about gaining trust and four of thenurses discussed “being there” for clients in terms of accompanying them tohealth care services. The nurses went with clients and caregivers to doctor’svisits, prenatal classes, etc. This helped them to support the clients andcaregivers to ask the right questions and get the information they needed tosustain them in the community. One nurse stated that sometimes clients wouldjust want to come and talk with somebody because they were lonely in thecommunity. This nurse sometimes took clients to community based facilities hewould like the client to attend “as a way of introducing them .... so that theyare with somebody that they’re familiar with and hopefully trust”. Thiswould make their transition to the facility much easier. Relationship buildingwas seen to be essential to the success of their program by many of the nursesinterviewed.In summary, the support component of the nurses’ role includedactivities which are easily identified as components of the nursing process ortraditional nursing skills.Role85The Teaching/Learning RoleThe teaching/learning role was identified by many of the participants asone of the most important functions of the job. Teaching/learning included allactivities related to teaching individuals and groups, such as identifying learningneeds, planning and coordinating training, and the delivery of both formal andinformal educational sessions. This category also included self-learningactivities such as researching, updating, reading, studying, and attendingworkshops or conferences. The teaching/learning component of the role isdivided into two subcategories of teaching (others) and (self) learning. All ofthe nurses suggested “a major teaching role” and one HSCL nurse stated “Ourwhole job or at least 98% of our job I would say .... is teaching”.Teaching was identified as the most challenging part of the job for this nurse.TeachingThe nurses taught many people many things in many ways. Teachingactivities also included delegating nursing functions to caregivers. The nurseswere delegating traditional skills like gastrostomy feedings and dressingchanges. The In-School Support nurses taught SEAs specific nursingprocedures like seizure management and catheterization. One nurse described aprocess where skills were taught, demonstrated back to her by caregivers,evaluated, and then “handed over”. This process also required monitoring andfollow up. The other nurses also taught specific procedures to clients andcaregivers. A lot of time was spent teaching about seizures and medications.Role86These nurses also identified a monitoring function and evaluated how wellthings were going for clients and caregivers. Some stated they were “lookingat standards of charting and recording” or going back and watching caregiversgo through procedures.A number of nurses were involved in setting up their new HSCL program.This included activities like developing protocols and resources as well as filingsystems. These activities were required before the teaching could be done.Time was spent by all nurses “building up” their resource files and developingspecific policies or procedures (such as seizure management procedures), andforms (such as forms for admitting a client to a community hospital).Teaching included identifying learning needs for prospective learners aswell as the preparation of teaching materials to assist the exchange ofinformation. The nurses spent most of their teaching time with clients andcaregivers, but many stated they were also providing inservices for others. Forexample, the nurses in the In-School Support Program provided inservices forall special education staff on topics such as health care needs of people withsevere mental handicaps, cerebral palsy, incontinence, and infection control.Most of the HSCL nurses were involved in similar teaching activities.The most frequently mentioned teaching topics included seizure management,medications, bowel management, universal precautions, catheters anddressings, and preventive signs and symptoms for specific conditions. Theywere teaching families, other professionals, community groups, and Societies.Role87Often the teaching would require gathering information or sharing informationwhich was simply passed on to the caregivers.The nurses did both formal and informal teaching. One nurse discussedinformal teaching with clients and staff after (their) reading the completedhealth care plan. She spent time “making sure the staff understands that”.She also provided the client or staff with appropriate literature and videos, andmentioned that she helped them use health care services by explaining whatdiagnostic tests were about and what they could expect. Another nurse statedthat he spent time showing caregivers how to approach clients and how toframe their day. These activities were discussed by other nurses as well.Formal teaching included presentations to community societies,associations, and the general public. A few of the nurses added a function oforganizing and bringing people together for conferences, and one nurse wasdoing a major presentation at an upcoming health conference.LearninciSelf-learning was discussed by the nurses and approached in a variety ofways according to specific learning needs. Nurses identified their own learningneeds which, in most cases, included updating on seizure management, andmedications used for people with severe mental handicaps and multipledisabilities. The learning needs, however, were contingent on the nurses’ ownknowledge base as well as client needs. For example, some of the nurses feltthey were novices in this field. These nurses spent a great deal of time seekingRole88out learning material and resources to increase their knowledge of people withmental handicaps in general. They went to many conferences and workshopson any related topic.Other nurses, with a lot of experience working with people with severemental handicaps, required updating on current nursing procedures andcommunity practices. Some of the nurses were also involved in setting upspeakers to come and talk to them. Most of the nurses stated that they spenttime educating themselves; getting to know the resources and services thatwere in the community, building up their knowledge base by meeting withpeople, researching material, learning where they “fit”, who all the playerswere, where everything was, sorting out the personnel and what they did,learning a new role, where all the lines were drawn, and learning the rules.Another theme which emerged as part of learning referred to gettinginformation on how to set up programs for specific areas or learning to teach.The nurses found learning and researching knowledge areas to be verychallenging and enjoyed this part of the job, even though some also identifiedthis as the most difficult component as well.Other FindingsAlthough travelling is not categorized as a specific activity or function, itwas clearly recognized as a means to accomplish all components of the nurse’srole. The nurses spent time getting from one place to another, usually driving.Role89Travelling into the office then to the clients’ homes and back again, andtravelling to other community resources and agencies were discussed by eachnurse. Many of the nurses also travelled to and from meetings and someexplained additional travel requirements. The HSCL nurse in Maple Ridge, forexample, spent two days a week in Mission and spent a lot of time on theroad. Another nurse travelled from Vernon to Armstrong as part of hiscommunity territory, and a third travelled from Kelowna to Penticton onoccasion, and had made three trips to Vancouver from Kelowna.One nurse specified that he transported clients from home to communityfacilities, and another aspect of travel that emerged from the data was an issuearound the use of government vehicles. As one nurse explained, caregiverswere unhappy with government cars because the clients were trying to fit intothe community and then, as she put it, “when anything happens, thegovernment nurse shows up in a Ministry of Health car”. Some of the nursesfelt they had travel restrictions. One nurse, for example, stated she was notallowed to go to any meetings or “even the library” if this was outside thejurisdiction of her health unit. Other nurses, in the same program, frequentlyattended meetings outside their regions.Time management was a skill which all nurses discussed as being arequirement for each component of the job. The nurses had varying degrees ofcomfort with managing time. One nurse identified this as the most challengingand difficult part of her job. Another stated it was the most excitingRole90component. All the nurses, however, agreed that their jobs required a lot ofautonomy. As one nurse stated “you’re very much on your own and you’reaccountable to yourself”. Communication and interpersonal skills were alsoidentified as important to the job.SummaryChapter four presented the demographics of the twelve nursesparticipating in the study and the research findings. Three distinct categories ofdata were described. These categories encompass the nurses’ perceptions ofthe role of the nurse working with people with severe mental handicaps in thecommunity and included collaboration, support, and teaching/learning.Collaboration included activities where the nurses worked with others ina cooperative effort. This category included the subcategories of consultation(giving advice, opinions, or input intended to influence others in decision-makingand making referrals), liaison (activities for communicating information betweenstakeholders) and team participation (attending meetings and working as part ofa team). Support included those activities which may be seen as traditionalnursing skills. These were organized into subcategories of advocating(representing clients and caregivers in receiving appropriate services), assessing(activities related to client health assessment and assessment of the clients’environment including caregivers, and data collection), documenting (the“written version of the job”), planning (health care interventions, sorting dataRole91and problem identification) providing direct care (nursing skills used directly withclients) and relationship building (activities for establishing and maintainingrelationships with others). Teaching/learning included activities related toteaching others (individuals and groups) as well as self-learning activities.Role92CHAPTER FIVE: DISCUSSION OF FINDINGSThe findings from twelve nurses working in the community withindividuals with severe mental handicaps were presented in the precedingchapter. Three distinct categories of functions or roles emerged from the data;collaboration, support, and teaching/learning. These three roles were identifiedby each of the twelve nurses who participated in the study. The categories arenow discussed in relation to the current state of knowledge.Review of the literature reflected a limited state of knowledge aboutindividuals with severe mental handicaps living in the community and most ofthe literature found was narrative in nature, rather than research based. Lordand Pedlar (1 991) state that they are unaware of any reports of longitudinalstudies in the context of deinstitutionalization in Canada (other than their own).Knowledge of nursing services and perspectives of roles for nurses in thisfield was even more limited. This is likely because, until recently, very fewpeople with severe mental handicaps have been living in the community. BritishColumbians are among the first to be deinstitutionalized and community nursingservices for people with mental handicaps were not available in the past.Therefore, literature about the focus of practice for public health nurses andnurses working in similar fields was examined.Role93The Role of CollaborationThis category or role refers to activities where the nurses worked withother people in a cooperative effort for the purposes of consultation, liaison,and team participation. The nurses all agreed that collaboration was a majorrole for them. They spent a great deal of time doing collaborative activities.The role of collaboration for nurses working with people with severe mentalhandicaps living in the community was consistent with activities discussed inthe literature from similar fields such as community health nursing, communitymental health nursing, and working with children with developmental disabilitiesliving with their families.Collaboration and/or components of collaboration were discussed in theliterature as roles identified for public health nurses and nurses working withgroups similar to people with severe mental handicaps. For example, Kenyon,Smith, Hefty, Bell, McNeil, and Martaus (1990) identify collaboration as acompetency for community nursing practice. They define collaboration as theability to work effectively with others and to establish and maintain functionalnetwork systems that allow for the greatest client services. Collaboration inthis sense requires political astuteness and maturity (Kenyon et al).All of the nurses in this study discussed consultation, liaison, and teamparticipation as components of the collaboration role. The Canadian PublicHealth Association (CPHA) identifies activities which may be interpreted asspecific roles for public health nurses. These include activities of consultationRole94where the nurse uses knowledge to provide information to others and acts as aresource person and links those needing services to appropriate communityresources (CPHAI 1 990). The CPHA (1 990) also discusses an activity of teammember/collaborator where the nurse uses techniques to foster team building.These activities are very similar to many mentioned by the nurses in this study.Team participation and consultation are also consistent with the newdirections for health care suggested by the Canadian and British Columbiagovernments. These new directions include respecting the care provider andbringing health closer to home (Duncan, 1994). Some of the nurses in thestudy stated that as part of their collaborative role, they were involved with thecommunity at all levels and provided a strong voice for their clients in decision-making on health care issues. This parallels a suggestion by RNABC thatrestructuring health care in keeping with health reform principles of greatercommunity control and delivery closer to home includes ensuring that nurseshave a voice in decision-making on health services issues (Duncan).In a study focussing on future roles for public health nurses, consultant isidentified as an executive or administrative function (Clarke, Beddome, &Whyte, 1993). The authors do not, however, go on to discuss the rolespecifically. Darbyshire (1 988), editor of Mental Handicaø Nursino, alsosuggests a consultative role for nurses in this field. The Ministry of SocialServices and Housing and the Ministry of Health (1991) state that nurses wouldbecome the primary link to all facets of the health care system for people withRole95mental handicaps. This activity fits in with the subcategory liaison whichemerged from the data in the study.Kenyon et al. (1990) discuss leadership as the ability to work withmultidisciplinary and multiagency groups, providing the nursing perspective ofthe program or task and to advocate for the clients in the context of theseinteractions. Many nurses in this study discussed this as part of teamparticipation. Many of the nurses in this study were concerned about politicalnetworking and identified this as the most difficult part of the job because theywere not knowledgeable in this area. This speaks to a need for politicaleducation for these nurses. Matuk and Horsburgh (1992) identify this need andcite a discussion paper prepared by a Working Group of theFederal/Provincial/Territorial Nursing Consultants (1991) where community andpublic health nurses were frustrated by their lack of skills in interdisciplinarycollaboration.Collaboration was also identified in the literature as part of developingpartnerships. Partnerships include activities where a person shares orassociates with others. The CPHA (1990) discusses partnerships in terms ofhealth promotion where community health nurses initiate or participate inactivities in partnership with colleagues, others in the community, and othersectors. The nurses in this study were working towards developingpartnerships with clients, caregivers, and community resources as part of theircollaborative function.Role96Most of the nurses also found the collaboration role frustrating at times.Caregivers and service providers had a distorted vision of the communitynurse’s role and saw the nurse strictly as a provider of medical care or amonitor looking for group home licensing infractions. Some caregivers wereunable to see that the community nurse had more to offer such as assistingwith clients’ behavioural problems, obtaining community resources, andteaching. The nurses expressed concerns that clients’ care was fragmentedbecause of the failure to draw on their nursing expertise.The nurses were also concerned about safety issues for their clients andwere having difficulty balancing this with an increasing emphasis on clients’rights. This brings up a significant ethical issue. How many risks are clientsallowed to take and what is the nature of the risks? Is the client’s medical careadequate? The adequacy of medical care in the community for people withsevere mental handicaps is identified in the literature as a major concern voicedby families (MSSH, 1991). Medication errors in particular are identified in theliterature as a significant health concern (Spangler, Gilman, & Laborde, 1990).Other collaborative activities included case management, case finding,organizing and coordinating activities, and facilitating meetings. The role ofmanager is identified in the literature as a role for public health nurses by boththe CPHA (1 990) and the American Nursing Association (ANA) as reported byAnderson and McFarlane (1988). This role is also suggested as a future role byRole97Clarke et al. (1993). Specific activities included in this study’s collaborationrole were also identified in the literature.Some of the nurses in this study described themselves as coordinatorsand facilitators of health care services. Coordination or case management isconsidered a nursing function frequently in the literature (Anderson &McFarlane, 1988; Bean, 1981; Clarke et al., 1993). The RNABC suggestsbetter utilization of nurses to deliver community-based care and casemanagement services are suggested as a strategy for restructuring health care(Duncan, 1994).Wilson and Kneisl (1992) discuss case management as a function forcommunity health nursing and suggest that the role is grounded in Social Work.They state that the nurse as case manager is expected to coordinate servicesand ensure their delivery to meet the needs of clients. The case managerassesses total needs, establishes goals, and then obtains the set of servicesrequired to meet them (Wilson & Kneisl). The case manager is also expected tobe the primary care agent, human contact between the clients and thebureaucracy, advocate for clients and at the same time, the representative ofthe formal organization (Wilson & Kneisl). Many of the nurses in this studydescribed this aspect as the most difficult part of the job. This difficulty wasalso noted by Aviram (1990) who states that critics feel if case managers are tofulfil their potential, they would need resources, administrative authority andsalaries that would attract professionals to this role.Role98Kenyon et al. (1990) define case management as the ability to establishan appropriate plan of care based on client assessment and coordinate thenecessary resources and services to the client’s benefit. This requires goodunderstanding and knowledge of community resources, communication skills,negotiating and conflict-resolution skills, as well as analytical skills necessary toidentify problems and set priorities to identify the best resources for referral(Kenyon et al). Many of the nurses in this study identified these same skills asbeing very important. Kenyon et al. also describe a role of health care systemmanagement which is consistent with the collaboration role described in thisstudy. This role requires the ability to manage client care across multiagencyand interdisciplinary lines using many sets of rules, regulations, and guidelines(Kenyon et al).The CPHA (1990) identifies resource manager, coordinator, andfacilitator as specific functions, and Clarke et al. (1 993) discuss enabler as afuture role similar to facilitator. This role requires a shift in power base to apartnership relationship between nurses and caregivers. Case finding wasdiscussed by one of the nurses in this study. Kenyon et al. (1990) also discusscase finding and define this as the ability to identify others in the home orcommunity who may be in need of services.The degree of comfort with the collaboration role differed among theresearch subjects. Three of the HSCL nurses were very uncomfortable with thisrole and mentioned that they preferred the direct care aspects (or found themRole99more important). It is interesting to note that these three nurses had come fromstaff nurse positions in the institution and had little or no experience with suchan autonomous job. The nurses from the institution who came from higherlevels of nursing function (head nurses or supervisors) found this part of the jobcomfortable and had problems with the direct care activities. This highlightsthe importance of nurses being prepared for the roles they are taking on, whichwill be discussed in more detail in Chapter Six.The Role of SupportThis category encompasses those activities which are often considerednursing process, traditional nursing roles, functions related to maintaining thehealth of clients, or meeting the needs of clients and maintaining caregivers intheir roles. The support role includes the components of advocating, assessing,documenting, planning, providing direct care, and relationship building.The components of the support function for nurses are so closely relatedthat it is difficult to discuss them separately. For example, assessing is often aprerequisite for advocating and planning. Once the client has been assessed,and problems or potential problems have been identified, advocating forappropriate services and providing direct care provide ways of dealing withthose problems. This close relationship of these components was alsoevidenced in the literature. Wilson and Kneisl (1992), for example, state thatRole100the nurse needs to build relationships, assess clients, and connect them topertinent services, then reassess and replan as necessary.Advocating includes activities which focussed on representing clients andcaregivers in receiving appropriate services. Advocacy is clearly an importantconcept to consider when providing health care services for people with severemental handicaps. This specific client group cannot often speak for themselvesand caregivers are often uneducated in health care issues. It is therefore criticalthat the nurse represent the client to ensure appropriate services are obtained.Darbyshire (1989) clearly identifies advocacy as a role for nurses workingwith people with mental handicaps. The ANA identifies advocacy as a nursingactivity for public health nurses (Anderson & McFarlane, 1 988) and Clarke et al.(1993) suggest it as a future role. The CPHA (1990) discusses a facilitator rolewhich includes advocating activities. Wilson and Kneisl (1992) identifyadvocating as a role for community health nurses and Bean (1981) discussesadvocating as a basic function for nurses working with developmentallydisabled children living with their families.Health concerns were discussed in terms of advocacy by the nurses inthis study. The nurses assessed clients and found problems or situations wherethe clients were “at risk” or in danger health-wise. The nurses however, did notfeel that the caregivers were listening to them. As part of their advocacyfunction, the nurses would try to obtain appropriate care for the clients butsometimes came up against the caregivers or service providers who disagreedRole101with the initial problem. The consultative, collaboration role emphasized thatthe nurses influence others but clearly they are not the decision-makers forclients. The two functions of advocacy and consultation were incompatible inthese situations and often left the nurses feeling powerless. The nursesidentified client health problems and planned accordingly, but the caregiversdisagreed and would not follow through with the plan. The North AmericanNursing Diagnosis Association’s (cited in Drew, 1 990) definition ofpowerlessness, the perception that one’s actions will not significantly affect anoutcome or perceived lack of control over current situations, describes thesenurses’ situation.According to Wilson and Kneisl (1992) the nurse needs power toimplement change through caring and expertise. Power is described as theability to control others, or authority, and the literature on powerlessnessfocuses on the concept of locus of control (Drew, 1990). Rotter (1966)distinguishes an internal locus of control or tendency of the individual to viewlife events as occurring as the result of his/her behaviours, and an external locusof control when one perceives outside forces as determinants of events,resulting in the expectation of personal powerlessness. The lack of control overclient care was an external locus of control for the nurses in this study. Thenurses felt that their concerns were not listened to, and that they had noinfluence over the health of their clients in these situations.Role102Many of the nurses in this study were used to having power over clientcare and health in the institutional setting but were now experiencing difficultyadjusting to the community shift. Matuk and Horsburgh (1 992) suggest that toempower nurses to respond effectively to the new directions shift, it isimperative that the profession be reclarified as a specialty with a distinctphilosophy and mission. Education is the key to facilitate this process andempower nurses to meet the challenges effectively (Matuk & Horsburgh).Assessing, in this study, refers to assessing health care needs of clientsand assessing caregivers and others as part of the clients’ environment.Assessment is identified as a nursing role for nurses working with people withmental handicaps by Blackwell (1 979), for public health nurses by the ANA(Anderson & McFarlane, 1 988), and for nurses working with families withchildren with developmental disabilities by Bean (1981). Kenyon et al. (1990)also discuss assessment as a competency for community nurses and defineassessment as the ability to assess the physiologic, environmental, andpsychosocial characteristics of the client and family. This is consistent with thefindings of this study. Many of the nurses reported assessing thesecharacteristics of their clients.During the assessment, the nurses in this study identified a number ofhealth issues for clients. These included seizure management, hygiene,medication side effects, and mental health issues. Other health issues identifiedin the literature include the prevalence of overweight and obesity (Bell & Bhate,Role1031 992) which is associated with coronary heart disease, hypertension,gallstones, diabetes, gout, decreased lung function, and osteoarthritis (RoyalCollege of Physicians, 1993). The nurses in this study were also concernedabout the nutrition of their clients and saw this as something that needed to beaddressed. General feeding problems, dysphagia, and lack of appropriatecommunity resources often hampered nutritional intake, and sometimes thecaregivers did not recognize the importance of adequate nutrition.Planning included sorting data, identifying and solving problems (includingpotential problems), and developing and updating care plans with interventions.Many of the articles reviewed discuss planning as a role for nurses. The APHAfor instance, focusses on planning (Anderson & McFarlane, 1 988), as doesBean (1981), and Clarke et al. (1993) suggest planner as a future executive rolefor public health nurses.Kenyon et al. (1990) define planning in terms of “decision-making prioritysetting” which is the ability to identify problems accurately, priorize themappropriately and plan and initiate interventions with positive outcomes forclients. “Caregiver value orientation” is also discussed by Kenyon et al. as acompetency for community health nurses. Caregiver value orientation is theability to focus on long-term as well as short-term health care needs and toaddress those needs which are expressed as well as assessed in the care plan(Kenyon et al). These ideas are similar to those expressed by the nurses in thisRole104study. Often care plans were developed from information expressed bycaregivers, particularly when clients were non-verbal.Wilson and Kneisl (1 992) state that the community mental health nursedevelops a nursing care plan with specific goals and interventions delineatingactions unique to the client’s needs, and that this is used to guide therapeuticinterventions and achieve desire goals. Many of the nurses in this studydescribed such a care plan. Health promotion, maintenance, and continuity ofcare are used by community health nurses in a holistic approach to health care(Stanhope & Lancaster, 1 992). These functions could be incorporated into thestudy “planning” component as identification and solving of potential problems.Clarke et al. (1993) also acknowledge a future health promotion role.Providing direct care refers to specific nursing procedures performed onor with clients, including counselling and therapy. The findings in the literaturereflect the inconsistent findings in the research study in reference to direct care.The CPHA (1 990) identifies care-service provider as a specific role for publichealth nurses. Specific activities and therapies are also noted in the literature.Wilson and Kneisl (1 992) state that one of the roles of the community mentalhealth nurse is to provide psychotherapy and the ANA identifies counselling as anursing activity (Anderson & McFarlane, 1 988) for community health nurses.Bean (1981) discusses counselling as a basic function for nurses working withdevelopmentally disabled children living with their families. She also identifiesimplementing nursing interventions as a basic component of the nurse’s role, asRole105does the APHA (Anderson & McFarlane, 1988). Clarke et al. (1993), however,do not see a role for direct care in the future. This corresponds with theopinion of many nurses in this study.Relationship building referred to activities to initiate and maintainrelationships with client and caregivers. Such activities included public relationsactivities, “just being there”, empathizing, listening to and hearing clients andcaregivers, as well as helping or facilitating people in their positions workingwith people with severe mental handicaps in the community.Public relations was specifically mentioned by only two nurses in thestudy, but most of the HSCL nurses stated they spent time “selling services”and “clearing up misinformation”. Although it is beyond the scope of this studyto clarify the source of this misinformation, it is reasonable to consider thatbecause the HSCL Program is new and many of the service providers have beenmanaging quite well without nursing services for a number of years, someresistance exists. It is widely known that change is a difficult concept for manypeople. Promotion of the program was considered necessary because of thesemisconceptions and the newness of the service which provided no experientialbase of knowledge. This may not be the case with public health nursesworking in well established positions. Matuk and Horsburgh (1992), however,identify a similar problem and state that in the past many traditional activitieswere replaced by competitive multidisciplinary workers and that nurses’ skillsRole106have not been overtly recognized as essential to carry out programs andservices.Public relations was not found consistently in the literature as a nursingrole. The CPHA (1990), however, identifies “social marketer” as an activity forcommunity health nurses and states that the nurse uses marketing techniquesand skills to promote community health programs and healthy living, as well asraise and foster awareness of the role of the nurse. Using social marketingstrategies to describe services is important for public health nurses because thepublic will not always come to public health nurses with problems and seek outtheir services (Working Group, 1991). Matuk and Horsburgh (1992) alsosuggest that the nurses will confidently articulate their expanded roles to thecommunity. These activities or functions are similar to those discussed by thenurses in the study to sell their services and programs.Communication skills were recognized by the nurses in this study to bean integral part of relationship building. It was important for the nurses to gaintrust and be non-judgemental when collaborating with others. This was ofparticular importance when they had trouble getting through the door of a grouphome because the caregivers were afraid the nurses would be looking for thingsthey did wrong. Relationship building referred to activities which were oftenencompassed by the broader role of communicator or supporter in the literature.Communication is discussed by the CPHA (1990) as a specific role to establishhelping relationships.Role107The role of support in maintaining the health of clients with mentalhandicaps and in staff retention in group homes has been documented.Lack of support systems for caregivers is identified as a major contributingfactor for staff turnover rates in the literature (George & Baumeister, 1981).Although staff related issues are identified as critical to the success of a grouphome (Baker, Seltzer, & Seltzer, 1 977), these issues have not been sufficientlyaddressed. The Ministry of Social Services and Housing and the Ministry ofHealth (1991) state that nurses would support the physical and medical wellbeing of all adults with mental handicaps in government funded resources.Blackwell (1 979) states that a qualified nurse is the most effective professionalfor general support for people with mental handicaps and Bean (1981) alsoidentifies supporting as a basic function for nurses in terms of client healthmaintenance.Merker and Wernsing (1984) suggest that acute medical problems shouldbe treated in the physician’s office as the commotion of an emergencydepartment would exacerbate behaviour problems. This is consistent with therelationship building aspect of the nurse’s support role in this study. All of thenurses discussed working with community physicians and five nurses went tothe doctor’s office with clients. Only one nurse mentioned that a client “wentto emerg.” and this was following a visit to the office where the physicianreferred him on because of a lack of specific procedural facilities andequipment. She went with her client to the hospital emergency department toRole108provide support as well. Relationship building in particular was seen by many ofthe nurses to be essential to the success of their program.Documenting includes everything which made up “the written version” ofthe job. Documenting was not found in the literature discussing roles fornurses, but a great deal of time was spent by all of the nurses in this studydoing paperwork and they believed it to be an important aspect of their job.Perhaps documenting is included as part of the broader function ofimplementing nursing interventions in the information reviewed, but no evidencefor this was found.The Teaching/Learning RoleThis role was identified by many of the nurses in the study as the biggestor most important function of the job. One nurse stated “98% of the job isteaching”. Teaching/learning included all activities related to teachingindividuals and groups, such as identifying learning needs, planning andcoordinating training, and the delivery of both formal and informal educationalsessions. This role also included self-learning activities such as updating,reading, studying, and attending workshops or conferences.The nurses identified teaching as a major function and agreed thatcaregivers had many learning needs. Again problems arose when caregivers didnot recognize their knowledge deficits and did not allow the nurses to intervene.This is another issue which clearly needs to be reviewed. For the most part,Role109the nurses spent a lot of time in teaching activities with caregivers. This fitswith a suggestion made by Savage (1 984) that regular inservice training shouldbe built into the group home system. Lack of staff training is identified as amajor contributor to staff turnover rates (George & Baumeister, 1981). Lack ofknowledge of caregivers was discussed by each of the twelve nurses in thisstudy as well. The nurses spoke about “untrained caregivers” who had littleawareness of procedures related to monitoring clients health such as takingtemperatures or in maintaining health by giving medications correctly. Thisissue may be addressed through nurses teaching caregivers. Concerns for thehealth of residents may also be addressed through this role, and the importanceof the nurse to support clients and advocate for them is highlighted bycaregivers’ lack of health knowledge. Some of the nurses were teachingcommunity groups as well as clients and caregivers, and most saw this as anexpanding role in the future.Education or training was identified as a specific role for nurses by mostof the sources referenced. Darbyshire (1988) suggests an educative role, so doBlackwell (1979), Bean (1981), and Kenyon et al. (1990), who define teachingas the ability to identify learning needs, plan and implement teachingappropriate to those needs, apply theories relevant to the learner, and adapt theteaching in the context of the client’s own environment and value system. Thisdefinition is consistent with the activities described in this study as part of theteaching function. Both the CPHA (1990) and the ANA (Anderson &Role110McFarlane, 1988) recognize educator as a specific role, and Clarke et al. (1 993)identify this as a future function for public health nurses. Providingpsychoeducational approaches for caregivers and teaching self-care activitiesare roles listed by Wilson and Kneisl (1992) for community mental healthnurses.Other teaching activities identified in this study include delegating nursingfunctions, developing standards and guidelines, setting up programs, andevaluating health care and services, or monitoring. The Ministry of SocialServices and Housing and the Ministry of Health (1991) state that nurses wouldmonitor the physical and medical well-being of all adults with mental handicapsin government funded resources. Bremer (1987) also discusses professionalmonitoring of health status as a part of the role for public health nurses workingwith the elderly. Bean (1981) identifies evaluation as a nursing activity, as doesthe American Public Health Association (APHA) as cited in Anderson andMcFarlane (1988). Wilson and Kneisl (1 990) also identify coordinating andmonitoring follow-up care in residential facilities as a role or function forcommunity mental health nurses. Early detection of health issues and problemsis essential when striving for optimal health for clients with severe mentalhandicaps.Some of the nurses in this study stated that they were responsible forsetting up the HSCL program on their own. Protocols, policies, and guidelineswere required before they were able to plan teaching. The literature does notRole111discuss program development as a function for field staff. Programdevelopment, in most situations, was done by consultants and programmanagers. Some of the activities discussed by the nurses as part of programdevelopment, however, were identified in the literature at varying levels. Forexample, standard and policy development, program evaluation, andintersectoral work were discussed by the nurses in this study. These wereidentified in the literature as activities nurses participated in, but were notentirely responsible for.The CPHA (1990) discusses policy formulator (developing policies) as anactivity for community health nurses. CPHA suggests that nurses identify theneed for policy and program development, participate in and monitor itsimplementation and evaluation, as well as assist in establishing clear nursingphilosophies, policies, standards of practice, and program objectives withmeasurable outcomes. Many of the nurses in this study stated they weredeveloping policies, procedures, and protocols on a regular basis.Policy formulator was also suggested as a future role for public healthnurses by Clarke et al. (1993) who suggest that in the future, community healthnurses will participate in health care policy formulation, program developmentand evaluation, as well as intersectoral work as stated by Shamansky (1989).The learning component of the role was not found in the literaturepertaining to nursing functions, but learning is discussed for nurses in general. Ibelieve this is because the roles for the nurses in my study are new and aRole112certain amount of updating, reading, and learning is required. Learning wouldbe required for anyone starting a new position even if the role was not new.Self-learning is an important part of professional development for nurses andconsidering that one of the nursing standards (Registered Nurses Association ofBritish Columbia, 1 992) includes self-learning as part of accountability, perhapsit should be addressed more.The changing roles of the nurses in this study presented a number ofissues to consider. Many of the nurses were uncomfortable with the new skillsrequired. The most discomfort was expressed in relation to consultation,liaison, relationship building, and teaching components of the job.Communication and observation skills were very important for carrying outthese functions. Kenyon et al. (1 990) discuss nurses moving from acute careto community settings. These nurses frequently express feelings of isolationand are unable to adequately cope with the many demands of their practice(Kenyon et al). Kramer (1974) describes this as specific shocklike reactions ofnew workers when they find themselves in a work situation they suddenly findthey are not prepared for. This is consistent with the situation of the nursesinterviewed. The need for training and support of nurses in new roles wasidentified in each aspect of the nursing role described in this study.In a discussion of health care initiatives for people with mentalhandicaps living in the community, a primary care provider role is identified byCriscione, Kastner, O’Brien, and Nathanson (1994). This care provider isRole113capable of overseeing the medical care of individuals with mental handicaps andpossesses specific knowledge and expertise of the unique medical and socialneeds of this population. This role is currently being provided by nursepractitioners with advanced educational qualifications in New Jersey (Criscioneet at). It is reasonable to suggest the same educational requirements for BritishColumbia. The CPHA (1990) states that community health nurses are requiredto have a BSN. Kenyon et al. (1 990) recommend education beyond the level ofa BSN for community health nurses and state that professional experience aswell as educational preparation is essential to building maturity. The WorkingGroup (1991) suggest educational requirements for future public health nursingstudents to include collaborating on multidisciplinary teams to promote healthypopulations and Wilson and Kneisl (1 992) suggest that the minimumeducational requirement for a psychiatric nurse consultant is at graduate level.Dieman, Jones, and Davis (1 988) recognize that a four yearbaccalaureate program cannot reasonably produce proficient nurses beyondentry level and Matuk and Horsburgh (1 992) recommend that after enteringpractice, inservice, continuing-education, and graduate education programs areavenues to foster professional and self-development. Kenyon et at. (1990)suggest that the diverse competencies required by the community health nursegive direction to expanding the decision-making, priority-setting, teaching, andcase management skills of newly hired nurses, and that the gaps left betweenbasic education and proficiency needs must be tilled. Education must addressRole114the reality that community health nursing is an advanced area of practice(Kenyon et al).Duncan (1 994) states that nurses need opportunities to develop newskills in areas of policy development, political action, and forming partnershipsand these can be obtained through continuing education, workshops, and otherinformal means. Joint appointments and other collaborative mechanisms todevelop programs to assist students and practicing nurses to acquire newknowledge and skills and effectively implement new roles and functions havealso been suggested (Black, Edwards, McKnight, Valaitis, & VanDover, 1 989;Kernen, 1985; Zink, 1989). Collaborative team work between education andpractice will provide a cornerstone for continued professional development(Selby, Riportella-Muller, Quade, Legault, & Salmon, 1 990). Matuk andHorsburgh (1 992) suggest that this team work will strengthen both, sensitizepublic health nursing students and practitioners to the needs of the profession,and foster collegial relationships between education and service.Other ActivitiesAll nurses spent time getting from one place to another and planningtheir days. Many of the nurses in this study spent a lot of time travelling andsome very little. Travelling was not found in the literature. Time managementwas mentioned frequently as a part of the coordinator role for public healthnurses and community mental health nurses (Anderson & McFarlane, 1 988;Role115CPHA, 1 990; Kenyon et al., 1 990; Stanhope & Lancaster, 1 992; Wilson &Kneisl, 1 992).SummaryThis chapter discussed the research findings in relation to the currentstate of knowledge. Review of the literature reflected a limited state ofknowledge about nursing services for people with severe mental handicaps;nevertheless, the three categories of functions identified in the study werecompared with the functions of nurses practicing in the community with otherclient groups. Information on the focus of practice for public health nurses andnurses working in similar fields provided evidence to support the findings in thestudy. Most of the role categories and activities of subcategories derived fromthe study were consistently described in the literature. Public relations andlearning were exceptions. It was suggested that this was because the roles forthe nurses in this study were new and a certain amount of “selling services”and self-learning could be expected. Documenting and travelling were alsomissing in the sources referenced but the study participants spent a lot of timedocumenting and travelling and felt these were important aspects of the job.Only one role was discussed in the literature but not mentioned by any ofthe nurses in this study. This was the function of researcher. Although someof the nurses discussed research in terms of a self-learning activity,participation in research activities was not indicated, nor did the nurses discussRole116the utilization of research in their practice. This too may be explained by thefact that these nurses were in new roles and perhaps needed a little time tosettle in before considering nursing research activities. It may also be areflection of their education level which is another issue, given the emphasis inthe literature.The three roles identified in this study are very closely related andsometimes the discussion of themes and findings overlapped. This points to amore holistic view of the nurse’s role in working with people with severe mentalhandicaps living in the community. This also emphasizes the problems andthemes that run through the role components. Evidence was found in thecurrent state of knowledge to support the findings of this study, however, anda clear direction for recommendations and nursing implications is provided.Role117CHAPTER SIX: SUMMARY, CONCLUSIONS ANDNURSING IMPLICATIONSThis chapter presents a summary of the research study and findings.Conclusions generated by the study findings are presented, and implications ofthese findings for nursing practice, education, and research are discussed.Research SummaryThis study explored and described nurses’ perceptions of their role inworking with individuals with severe mental handicaps in the community. Aqualitative, descriptive method was used to collect and analyze data. Twelvecommunity nurses working with people with severe mental handicaps in thecommunity participated in semi-structured interviews which were tape recordedthen transcribed verbatim. The data were analyzed using a process of inductivecontent analysis.Three distinct categories of nursing functions were identified anddescribed from the data. These categories were collaboration, support, andteaching/learning. Collaboration included all activities where the nurses workedin conjunction with others in a cooperative effort and was divided intocomponents of consultation, liaison and team participation. Support includedactivities related to maintaining the health of clients or meeting the needs ofclients and maintaining caregivers in their roles. Support was broken down intoRole118advocating, assessing, documenting, planning, providing direct care, andrelationship building. Teaching/learning encompassed activities related toteaching individuals and groups as well as self-learning, and was divided intothese two subcategories.The categories of nursing roles were discussed in relation to the currentstate of knowledge. Information on the focus of practice for public healthnurses and nurses working in similar fields provided evidence to support thefindings in the study.ConclusionsThe following conclusions may be drawn based on the findings of thisstudy.1. Nurses working with individuals with severe mental handicaps living inthe community performed a number of functions as part of their job.These functions can be divided into three roles: collaboration, support,and teaching/learning.2. Collaboration and teaching/learning were stated to be major roles by allof the nurses.3. Most nurses working with people with severe mental handicaps in thecommunity were doing case management activities and saw this as thefuture focus for their jobs.Role1194. Assessment, advocacy, planning, and relationship building were alsoactivities deemed to be important by nurses working with individualswith severe mental handicaps living in the community.5. Some of the nurses stated direct care was very important, others statedthey did not do direct care.6. Nurses expressed a feeling of powerlessness as a result of thebureaucracies in this field.7. Nurses with experience working with people with severe mentalhandicaps and nurses with higher levels of education appeared to bemore comfortable with collaborative and teaching activities while nurseswith little or no experience and nurses with lower levels of education ortraining seemed to be less comfortable with collaborative and teachingactivities.8. Observation, communication, and interpersonal skills were identified bythe nurses as being important in their work.9. A great deal of time was spent, by nurses working in the communitywith people with severe mental handicaps, in documentation and travel.Nursing ImplicationsThis study has both practical and scientific significance. Implications fornursing practice, education, and research may be delineated. As health careRole120moves increasingly towards community based services, it is important todescribe a unique role for nurses.Implications for Nursing PracticeInsight into the new roles for nurses working with people with severemental handicaps living in the community gives direction for skills and functionsrequired by these nurses. The findings of this study provide information to addto a very small body of knowledge for nurses and may be used to furtherdevelop these roles. I intend to submit the findings to the Program Manager ofthe HSCL Program to facilitate role development. This program is currentlyundergoing a service evaluation and such information will be valuable for thePlanning Committee. One of the characteristics of a profession is defining anddelimiting its own roles, therefore, a nursing perspective for the ongoingdevelopment and assessment of nursing roles is important.Nurses working in the community with people with severe mentalhandicaps will need to collaborate with clients, caregivers, and others to ensurethe health needs of their clients are met. These nurses will need to support theclients and caregivers in their efforts to provide successful community living,teaching and learning as necessary. Community nurses in this field will need toadvocate for people with severe mental handicaps and educate others, includingtheir colleagues in community health, with regards to the needs of thisparticular client group.Role121Health promotion and illness and accident prevention are importantaspects of the nurse’s role. For example, the nurses will be involved inpreventing the spread of communicable diseases, ensuring adequate nutritionfor clients and preventing complications from conditions (such as quadriplegia)which already exist for their clients.Case management is a future role for nurses working with people withsevere mental handicaps in the community. Some nurses are already doing alot of case management activities and most of the nurses interviewed in thisstudy suggested coordination or case management activities would beincreasing in the future. Identifying problems in the adequacy of care was alsodiscussed as a future role for nurses in this field. As a preventive measure, thenurses will need to evaluate the care provided for their clients and come up withinnovative measures to ensure problems are recognized by the caregivers orservice providers and dealt with accordingly. Teaching will be the key tofacilitating the development of caregiver awareness.Teaching functions provided many implications for the future. Learningneeds assessments for clients and caregivers were suggested as well aspotential teaching opportunities. Potential issues and problems could beanticipated in many situations and training could be planned for the future. Forexample, long term medication usage produces a number of side effects andproblems which may be dealt with in advance.Role122There were also suggestions made to provide support for nurses througha nurse specialist in this field, and an advisory or management role for one ofthe HSCL nurses. This management role would include acting as a resource forthe other nurses in this program. It is important for the government to modelsupportive behaviour for the nurses. If the nurses are expected to get out andsupport clients and staff in their community positions, the nurses need to besupported in their positions as well. Networking activities are required to link allof the nurses working with individuals with severe mental handicaps living inthe community. Regular teleconferences or meetings should be provided aswell as informal networking opportunities at conferences and communityforums.Networking would also enhance consistency in program delivery. Forexample, at the present time, all of the HSCL nurses are developing their ownteaching packages and protocols for seizure management. This creates thepotential for 33 different models being used throughout the province andsuggests a lack of coordination. A nurse advisor could coordinate efforts.Under this nurse’s direction, one or more nurses could develop a specifictraining module and pass it on to the others. Many modules have already beendeveloped for the In-School Support Program. These could be accessed andused as well.Direction is also provided in this study for administrators or supervisorsof nurses working with individuals with severe mental handicaps living in theRole123community. When selecting individuals for these nursing positions, knowledgeand competencies related to these roles and components of roles may beevaluated to ensure the nurses have appropriate beginning skills and abilities toperform the job. These competencies include observation, time management,communication, and interpersonal skills. Nurses with experience inconsultation, liaison, team participation, assessment, advocacy, planning,relationship building, and teaching could be recruited to these positions. Nurseswith these skills and competencies currently working in the institutions could beapproached by these administrators and enlisted for future jobs.A secondary implication for hospital nurses is that people with severemental handicaps are now becoming part of the general public and using generichealth care services. Nurses in health agencies, hospitals etc. will be requiredto provide care for these clients when their services are used. It is importantthat these nurses have good observation, communication, and interpersonalskills to facilitate this. It is also imperative that these nurses know that thereare community nurses available to act as resources for these clients.Time spent phoning, documenting, and travelling needs to be addressed.For example, if the nurses are spending weeks waiting for phone calls tocollaborate with others, client needs are not being addressed in the meantime.Perhaps a system could be set up where an alternate person could coordinatemessages or specific times set up for calling. Documentation should be reevaluated and duplication of reports should be discouraged. Only thoseRole124documents which are necessary should be required. Perhaps a tracking systemto weed out that information could be developed. Travel time should beassessed and perhaps schedules could be readjusted to keep travel to aminimum. Some client visits could be made at the day programs where anumber of clients could be seen at one time and some clients could come intothe health unit. This would be more consistent with generic services andnormalization. This would also limit the occurrences when the governmentnurse would arrive at the group home in a Ministry of Health car.This study also has practical implications for areas of nursing beyond thedeinstitutionalization of people with mental handicaps. The government moveto place more health care services into the community is already having a majorimpact on nurses in all fields. This nursing perspective of what nursing rolesare in relation to individuals with severe mental handicaps can assist with thedevelopment and assessment of nursing roles in other areas such as communitypsychiatry, early surgical discharge, paediatrics, long term, and continuing care.Implications for Nursing EducationThis study has a number of implications for nursing education. As thelarge institutions for people with mental handicaps close, all services for thesepeople, including nursing services, will be in the community. These people willbe using community clinics and acute care hospitals as well as all the otherhealth care services in the community which are available to the general public.Role125Nurses in all these areas need to be oriented to working with people with severemental and multiple handicaps and how to meet their needs.The information provided by this study gives direction to schools ofnursing for curricula changes as this focus of nursing care and educationexpands. For community nurses working in this field, a BSN is suggested as aminimum requirement. Nurses currently working in the institutions with peoplewith severe mental handicaps should be encouraged to work towards thisrequirement and be supported by government.Currently, the only nursing program in British Columbia which provideseducational theory and practise working with people with mental handicaps isthe Douglas College Psychiatric Nursing Program. Theoretical conceptsnecessary for nurses to work with individuals with severe mental handicapsneed to be incorporated into all the nursing programs in the province, includingthose programs available for Licensed Practical Nurses (LPNs). All nurses,including LPNs, will be required to provide services for people with severemental handicaps as these people are fully integrated into the generalpopulation.The roles identified in this study also give direction for skills andfunctions to be learned as part of the basic and orientation programs in thisfield. Nurses working with individuals with severe mental handicaps needspecific knowledge and expertise with regard to the medical and social needs ofthis population in order to coordinate services for their clients. These nursesRole126need the ability to manage client care across multiagency and transdisciplinarylines. This requires advanced knowledge in communication, observation,assessment, consultation, teaching, policy development, partnership, advocacy,networking, interpersonal relationships, public relations, marketing, and politics.Theory and skills in each of these areas should be incorporated into eachnursing program.Political education should include decision-making at the provincial level,as well as delineation of roles and responsibilities for each component of thepublic service. Ministry of Health and Ministry of Social Services roles need tobe defined as well as roles of specific local societies and community resources.The government move to regional and municipal health boards must also beincorporated into this training (as it occurs). Knowledge and practise in socialmarketing techniques, case management, health promotion, and illnessprevention are also required to prepare these nurses for future roles as casemanagers.Nursing administrators are implicated in that the new roles areincorporated into existing programs like Home Care. This reflects expanded ornew roles for nursing administrators in these areas who will require appropriateeducation and a body of knowledge. For example, Public Health and HomeCare supervisors and Continuing Care Managers are responsible for thesupervision of nurses working with individuals with severe mental handicapsliving in the community. These administrators need to know the roles andRole127functions fulfilled by these nurses. They also need to know about the clientgroup in general, the concept of community living for people with mentalhandicaps, and issues arising from community living which have implications forcommunity nurses.Many of the components of the nurse’s role identified in this study arenew and the nurses appear uncomfortable with them. Ongoing inserviceeducation, therefore, is very important for these nurses. The programs theywork in need to provide regular updates on all issues related to their roles andthey also should be encouraged to attend community forums and conferences.Due to the complexities of the functions and independent skills requiredfor the roles of the community nurses working with people with severe mentalhandicaps in the community identified in this study, it is reasonable to considera baccalaureate degree as the minimum requirement for these nurses.Academic positions should be established at the universities and colleges forexperts in the field to provide the necessary educational support for changes incurricula to occur. This could be done in partnership with the government toprovide joint appointments for specialists who could be brought in to theuniversities and colleges.Implications for Nursing ResearchThe findings of this study also have implications for nursing research andprogram evaluation. These findings provide a small baseline of knowledge forRole128nurses working with individuals with severe mental handicaps in the communityand point to additional research required in this field as well as acrossdisciplines.Exploration of a number of areas of investigation is suggested.1. The size of the study was limited to twelve participants. Furtherqualitative descriptions, or replications using the same methods, from allnurses working in this field would improve the validity and reliability ofthe study by providing a clearer, more definitive picture of the nursingroles. Validity and reliability could also be improved by quantifying theresults of this study. A quantitative survey listing the roles andcomponents of roles identified in this study could be forwarded to allnurses working in this field. The nurses could be asked to validate thefindings. For example, the nurses could be asked to check off thecomponents or roles they agreed were part of their job. Percentagescould be established according to the number of nurses indicating eachcomponent.2. What are the client health issues requiring nursing attention? Although anumber of issues were identified in this study, it is important to validatethis information. This could be done with another qualitative study andthe results could be quantified with a survey.3. Caregivers’ support has been identified as a significant factor forcaregiver turnover. Research is indicated to explore whether the rate ofRole129staff turnover in the group homes change now that these nurses are inplace to provide support and education for the caregivers. Amultisectoral study is indicated to compare turnover rates in the grouphomes where the community nurses in this study are interacting withcaregivers with those in group homes where this service is not available.4. The preventative and health promotion aspects of the roles identified inthis study need to be validated. This could be done by looking at acutecare hospital days used by clients with access to nurses working withindividuals with severe mental handicaps living in the community, andcomparing those days with the days used by clients without access tothese services.5. The nurses in the study were caucasian, and mostly of Canadian origin,therefore assumptions pertaining to cultural influences cannot be made.Further exploration, including nurses from other cultures would providethis information and improve validity and reliability.6. The nurses’ roles may change over the next five or ten years as a resultof the final closure of the institutions, community acceptance, or thenurses becoming more comfortable in their jobs. A longitudinal study toqualitatively explore these roles using similar methods would identifychanges in these roles and point to causes for these changes. Validityand reliability would be improved by quantifying results.Role1307. How do the nurses rank the importance of these roles and componentsof the roles? A quantitative survey, using a questionnaire with a Likerttype scale could be used to answer this research question. The sametype of survey could be done to answer how much time is spent on eachrole or component of the role.8. Further research is indicated to explore the nurses’ perspectives of whatsupport they need to carry out their roles.9. Further research is also indicated to describe and explore aspects of thejob which may be considered unnecessary. This could be done using aqualitative study similar to this study. Themes emerging from the data inthis study could be listed and a quantitative survey could be used tovalidate the information with all nurses working in this field.10. It is important to identify which nursing strategies are most effective inimproving client health by looking at outcome measures such as numberof days of illness over a specific period of time. The nurses’ perspectivesof how client health was improved will provide valuable information forplanning services for the future. Perspectives of clients, families, andcaregivers should be explored and described as well.11. It is noted that inservice education is required on a regular basis fornurses working with individuals with severe mental handicaps living inthe community to fill in the gaps between nursing education andpractice. Once this education is provided, it is important to exploreRole131whether the nurses feel they are more effective in their roles as a result.This is inservice program evaluation and could be done through aqualitative approach, similar to the one used in this study, followed upwith a survey to quantify results.1 2. It is also recommended that a baccalaureate degree be the minimumeducational requirement for nurses working with individuals with severemental handicaps living in the community, and that theory and practicerelated to people with mental handicaps be integrated into the curriculaof the colleges and universities. These programs will need to beevaluated as well.13. The various nursing service programs need to be evaluated, and alternateforms of care delivery explored and compared. For example, health teamapproaches and special services are used in some parts of the UnitedStates for people with mental handicaps living in the community. Theseprograms could be compared with the programs identified in this study.These are examples of possible future research studies and program evaluationneeds generated by the findings of this study.SummaryThis study has explored and described community nurses’ perceptions oftheir role in working with individuals with severe mental handicaps using aqualitative, descriptive method. Three distinct roles were identified andRole132described from the data using inductive content analysis: collaboration,support, and teaching/learning. These roles were further broken down intocomponents and evidence was found in the literature to support the findings.Collaboration and teaching/learning were stated to be major roles by allof the nurses, and most of the nurses were doing case management activitiesand saw this as their future focus. Assessment, advocacy, planning, andrelationship building were also activities done by nurses working with peoplewith severe mental handicaps living in the community, and the large amount oftime spent travelling and documenting should be reviewed.Nurses were frustrated with some of the components of their job andexpressed a feeling of powerlessness as a result of the bureaucracies. This wasa major problem for the nurses when caregivers did not recognize their own(caregivers’) knowledge deficits and did not allow the nurses to intervene withclients. The nurses with experience working with people with severe mentalhandicaps and nurses with advanced education appeared to be morecomfortable in their roles than nurses without experience or advancededucation. Observation, communication, time management, and interpersonalskills were important in the nurses’ work.It was suggested that ongoing inservice education and support arerequired for nurses working with individuals with severe mental handicaps livingin the community to fill the gaps between education and practice. It is realisticRoh133to consider a BSN as a minimum requirement and nurses currently working wIththis clIent population should be encouraged to work towards this degree.Finally, as a result of this study, thirteen areas for potential researchactivity were outlined briefly.Role134REFERENCESAdolph, V. (1 978). Woodlands: 100 years of progress. New Westminster:Ministry of Human Resources.American Association on Mental Deficiency. (1 983). Classification in mentalretardation. Washington: Author.Anderson, E., & McFarlane, J. (1988). Community as client: Application ofthe nursing orocess. Philadelphia: J.B. Lippincott Company.Aviram, U. (1990). 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Life in the community: Four years after theclosure of an institution. Mental Retardation, 29, (4), 213-221.Lynn, M. (1985). Reliability estimates: Use and disuse in recently publishednursing research. Nursing Research, 4 (4) 254-256.Markoff, J., Shapiro, G., &Weitman, S. (1977). Toward integration ofcontent analysis and general methodology. In Heise, D. (ed). Socialmethodology (pp. 1-58). San Francisco: Jossey-Bass.Massey, P. (1988). Sticking to the status quo. Nursing Times, 4, (28), 65.Matuk, L., & Horsburgh, M. (1992). Toward redefining public health nursing inCanada: Challenges for education. Public Health Nursing, 9, (3), 149-154.McCord, W. (1981). Community residences: The staff. In J. Wortis (Ed.),Mental retardation and develoomental disabilities: An annual review,12.Merker, E., & Wernsing, 0. (1984). Medical care of the deinstitutionalizedmentally retarded. American Family Physician, 29, (4), 228-233.Ministry of Social Services and Housing. (1 991). From institution tocommunity: Family particioation in community nlacement planning.Victoria: Author.Ministry of Social Services and Housing & Ministry of Health. (1991). Planningfor the future: A nroiosal for services for øeoole with mental handicaDs.Victoria: Author.National Institute on Mental Retardation. (1981). Orientation manual on mentalretardation. Toronto: NIMR.Nye, F. (ed.). (1976). Role structure and analysis of the family (Vol. 24).Beverly Hills: Sage.Role138O’Connor, G. & Sitkei, G. (1975). Study of a new frontier in communityservices: Residential facilities for the developmentally disabled. MentalRetardation, 13, (4), 35-38.Oiler, C. (1986). Phenomenology: The method. In L. Munhall & C. Oiler(Eds.), Nursing research: A qualitative perspective. Norwalk: AppletonCentury-Crofts.Orem, D. (1991). Nursing: Concepts of practice, (4th Ed.). Toronto: MosbyYear Book.Price, M. (1 984). Quality or quantity. Nursing Mirror, 159, (6), 6.Registered Nurses Association of British Columbia. (1992). Standards fornursing practice in British Columbia. Vancouver: Author.Riemen, D. (1986). The essential structure of a caring interaction: Doingphenomenology. In L. Munhall & C. Oiler (Eds.), Nursing research: Aqualitative persoective. Norwalk: Appleton-Century-Crofts.Rotter, J. (1966). Generalized expectancies for internal versus external controlof reinforcement. Psychological monographs, 80, (1).Royal College of Physicians. (1 983). Obesity: A report of the Royal College ofPhysicians. Journal of the Royal Colleae of Physicians of London, 17.Sandelowski, M. (1986). The problem of rigor in qualitative research.Advances in Nursing Science, 8, 27-37.Savage, P. (1 984). Towards community living. Nursing Mirror, 159 (6), 4-5.Schinke, S., & Wong, S. (1 977). Evaluation of staff training in group homesfor retarded persons. American Journal of Mental Deficiency, 82 (2),130-136.Selby, M., Riportella-Muller, R., Quade, D., Legault, C., & Salmon, M. (1990).Core curriculum master’s-level community health nursing education: Acomparison of the views of leaders in service and education. PublicHealth Nursing, Z 150-160.Shamansky, S. (1989). Who governs? Public Health Nursing, 6, (1), 1-2.Role139Spangler, P., Gilman, B., & LaBorde, R. (1990). Frequency and type ofincidents occurring in urban-based group homes. Journal of MentalDeficiency Research, 34 (4), 37 1-378.Spradley, B. (1990). Community health nursing: ConceDts and Dractice (3rdEd.). Glenview, Illinois: Scott, Foresman/Little Brown Higher Education.Stanhope, M., & Lancaster, J. (1992). Community health nursing: Processand Dractice for Dromotinci health (3rd Ed.). Toronto: C.V. MosbyCompany.Stern, P. (1 980). Grounded theory methodology: Its uses and processes.Image, Z (1), 20-23.Waltz, C., Strickland, 0., & Lenz, E. (1991). Measurement in nursingresearch (2nd Ed.). Philadelphia: F.A. Davis Company.Wilson, H., & Kneisi, C. (1 992). Psychiatric nursing. (4th Ed.). Redwood City,California: Addison-Wesley.Wolfensberger, W. (1979). Normalization. Toronto: National Institute onMental Retardation.Woods, N., & Catanzaro, M. (1 988). Nursing research: Theory and nractice.St. Louis: C.V. Mosby Co.Working Group of the Federal/Provincial/Territorial Nursing Consultants. (1 991).Discussion paDer: Educational requirements for community healthnurses. Toronto: Author.Zink, M. (1989). Curriculum analysis of home health content in associatedegree and baccalaureate degree nursing education. Public HealthNursing. , 8-15.Role140Appendix 1: Information Letter to Prospective ParticipantsDearI am a registered nurse presently enrolled as a student in the Master ofScience in Nursing (MSN) program at the University of British Columbia. I haveworked as a nurse and educator in the field of mental handicaps for 20 years.Most recently I have been assisting with program development of nursingservices for people with severe mental handicaps who live in communityresidential facilities.For my Master’s Thesis I am studying the experiences of nurses whowork with people with severe mental handicaps in the community. The purposeof this study is to increase understanding of nurses’ roles with individuals livingin the community with severe mental handicaps from the perspectives of thenurse.As a nurse currently working with people who have severe mentalhandicaps in the community, your participation in this study would be of greatassistance. Participation in the study is comprised of an in-depth interview(approximately one hour), in a location of your choice, and a follow up interviewto validate information collected. All information collected will be confidential.The interviews will be audiotaped and responses will not be shared with anyoneother than myself and thesis committee, without prior consent from you. Youmay withdraw from the study at any time, and any responses will be deletedfrom the study at your request.Participation in this study is voluntary. Please do not feel obligated inany way to participate. I have asked supervisors to distribute the letters so youare anonymous to me. If you are interested, please contact me directly.Your responses will provide valuable information for the ongoingdevelopment and assessment of the roles for nurses working with people withsevere mental handicaps in the community. A report of the findings of thisstudy will be forwarded to the Ministry Planning Committee.If you have any questions please do not hesitate to call me or my thesisadvisor Connie Canam. Thank you for you consideration.Connie Canam Jean ChurchAssistant Professor Graduate StudentUBC School of Nursing UBC School of NursingRole141Appendix 2: Participant Consent FormTitle of Study: Nurses’ perceptions of their experience working with peoplewith severe mental handicaps in the community.Investigator: Jean Church, B.S.N., R.N.Faculty Advisor: Connie Canam, B.N., M.S.N., R.N.Assistant ProfessorYou have been invited to participate in a research endeavour whichexamines the nurse’s role in working with people with severe mental handicapsin the community. The purpose of this study is to increase understanding ofthe roles for these nurses, as perceived by them.Participation in the study is comprised of an in-depth interview in alocation of your choice, and one follow up interview to validate informationcollected. The length of time required for the interview will be determined byyou. When you feel you have finished or exhausted your description, theinterview will end.All information gathered will be confidential. The interviews will betaped, but no identifying information will be used. Responses will not be sharedwith anyone other than myself and my thesis committee, without prior consentfrom you, and the tapes will be erased when the study is completed. No namesor identifying information will appear in any written reports or the final thesisdocument without prior consent from you. Anonymity and confidentiality ofinformation will be maintained.Participation in this study is voluntary. You are under no obligation toparticipate and may refuse, or withdraw from the study at any time withoutjeopardizing your employment. Should you consent to participate, you have theright to refuse to answer any questions or to stop an interview at any time.Any response or tape will be erased at your request at any time during thestudy.Your responses will provide valuable information for the ongoingdevelopment and assessment of the roles for nurses working with people withsevere mental handicaps in the community. A report of findings of this studywill be forwarded to the Ministry Planning Committee.Thank you for you participation and please feel free to call me or myfaculty advisor if you have any questions or concerns regarding the proceduresof the study.Role142I understand the nature of this study and give my consent to participatein it. I acknowledge receipt of a copy of the participant information letter andconsent form.Date SignatureRole143Appendix 3: Trigger QuestionsThe following are questions which may be used to elicit information fromthe research subjects during the unstructured interviews.1. Describe for me what your job involves.2. What is a typical day for you at work?3. Based on your experience, what things do you do, as a nurse in thecommunity, working with people with severe mental handicaps?4. Are there any other things that you are doing as part of your job?5. What types of activities are you involved with in the community relatedto people with severe mental handicaps?6. Can you say a little more about the skills you are using in your work?7. Describe the most challenging part of your job.8. What activities, in your job, would you say are the most difficult?Role144Appendix 4: Category SchemeCoding InstructionsThemes The themes are taken directly from the text and for the most part aredirect quotes. Included in themes should be any wording which relates to rolesor activities performed by the nurse as part of the job.Categories The categories are mutually exclusive and some categories aredivided into subcategories. Criteria for assigning content is presented alongwith key words and/or examples for each category.1. Collaboration This category includes all activities where the nurse worksjointly with others in a cooperative effort. This includes consultation,liaison, public relations, relationship building, team participation andworking with others to meet specific goals cooperatively. Key words orphrases used are discuss, talk about, chatter with them, work togetherto, meet or get together.a) Consultation This subcategory includes giving advice, opinions, orinput intended to influence others in decision-making. Consultationalso includes specific case management activities, facilitating, andkeeping people on track. Key words or phrases used include consult,influence, advice sought/given, opinions given, guidance, suggest weneed, help them, be a resource to them, make referrals, keep peopleon track, coordinate.b) Liaison This subcategory includes phoning activities and meetingsused for the purpose of communicating information betweenstakeholders. Key words and phrases used are liaise with, giveinformation to, let them know, communicate it to.C) Team Participation This subcategory includes all activities where thenurses attended meetings, gave input and worked together with otherhealth care professionals as a member of a team. Key words andphrases used are meet, attend meetings, team work, get-togethers.Role1452. Support This category includes activities which are used to assist orsustain clients, caregivers, or others in their positions or decisionsincluding listening skills and just being there for this purpose. Key wordsor phrases uses are listen to, try to really hear what they are saying, justbeing there, support, empathize, allay fears.a) Advocating This subcategory includes activities which focus onpleading the cause of others, more specifically to represent clientsand caregivers in receiving appropriate services. This includesensuring clients are seen by professionals, ensuring clients andcaregivers are benefitting from services etc. Key words and phrasesused are make sure that he is seen, make sure that this is done, seethat he is benefitting.b) Assessing This subcategory includes activities related to client healthassessment and assessment of the client’s environment includingcaregivers and data collection. Key words or phrases used areassess, investigate, find out, do home visits.c) Documenting This subcategory includes all regular activities done aspaper work. This includes writing in diaries, filling out care plans,completing forms, making records of training and writing in clientcharts. Key words and phrases used are record, document, write, putdown, fill out.d) Planning This subcategory includes activities related to planninghealth care interventions including sorting data, problem identificationand problem solving. Key words or phrases used include sort, figureout, work on care plan, priorize, thinking, looking at the wholesituation.e) Providing Direct Care This subcategory includes all activities wherethe nurse interacts directly with the client to provide health careprocedures, counselling, etc. Key words or phrases used are donursing care, do procedures, talk to client about, give care.f) Relationship Building This subcategory includes activities forestablishing and maintaining a positive working rapport withcaregivers, clients, families, physicians and others. Relationshipbuilding also includes activities to promote the nurse or the program.Key words and phrases used are just try to meet them, gain sometrust, get my foot in the door, promote, tell them what we are doing,let them know we are their resource, doing PR.Role1463. Teaching/Learning This category includes activities related to teachingand learning including identifying learning needs.a) Teaching This subcategory includes activities for teaching othersboth formally and informally. This includes planning and coordinatingtraining, as well as the delivery of inservice programs. Teaching alsoincludes delegating nursing functions, developing policies, standardsand guidelines necessary to initiate the training, and evaluating ormonitoring health, care and services. Key words or phrases used areinservice, teach, train, plan training, monitor, develop standards,follow-up.b) Self-learning This subcategory includes learning activities required toteach others. Key words or phrases used are update, study, upgrade,training for self, research, attend workshops or conferences.

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