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A phenomenological study on the experiences of aging parents caring for their adult son/daughter with… Petrica, Joni Elizabeth 1994

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A PHENOMENOLOGICAL STUDY ON THEEXPERIENCES OF AGING PARENTS CARING FORTHEIR ADULT SON/DAUGHTER WITH A DISABILITYbyJONI ELIZABETH PETRICAB.Ed., Western Washington University, 1983B.S.W., University of British Columbia, 1993A THESIS SUBMITTED IN PARTIAL FULFILMENT OFTHE REQUIREMENTS FOR THE DEGREE OFMASTER OF SOCIAL WORKinTHE FACULTY OF GRADUATE STUDIESThe School of Social WorkWe accept this thesis as conformingto the required standardTHE UNIVERSITY OF BRITISH COLUMBIAAugust 1994Joni Elizabeth Petrica, 1994In presenting this thesis in partial fulfillment of therequirements for an advanced degree at the University of BritishColumbia, I agree that the Library shall make it freely availablefor reference and study. I further agree that permission forextensive copying of this thesis for scholarly purposes may begranted by the head of my department or by his or herrepresentatives. It is understood that copying or publication ofthis thesis for financial gain shall not be allowed without mywritten permission.(Signature)of AThe University of British ColumbiaVancouver, CanadaDate /2 / /iiAbstractWith the continued movement toward deinstitutionalization, and community—based health care, professionalswill see a rise in the number of aging parents caring fortheir adult son/daughter with a disability. Little researchexists to understand the needs of aging parents, and what isavailable reflects quantitative studies that primarily focuson parents’ feelings of stress and burden, and their futureplanning concerns for the adult child. In order to discoverand describe the totality of aging parents’ experiences caringfor an adult child with a disability, this study used aphenomenological approach to elicit qualitative information.Both mothers and fathers were interviewed, and theresults indicated that the presence of a child with adisability in the lives of these parents has contributedpositively to parents’ sense of self, their perceptions ofthemselves as parents, and the meanings and interpretationsthey give to their lives in spite of - or as a result of —having cared for a disabled child. Parents’ accounts of theirexperiences with professionals also suggested the value ofsocial workers listening to parents’ needs and concerns in thecontext of a lifetime of struggles and demands, achievementsand accomplishments. In this way, social workers are betterable to help parents address their own developmental needs ofi Iaging by providing sensitive and timely programs and servicesthat address parents’ unique challenges raising an adult childwith a disability.ivTable of ContentsAbstract iiiTable of Contents vCHAPTER 1: INTRODUCTION 1CHAPTER 2: LITERATURE REVIEW3232333536414553CHAPTER 4: PRESENTATION AND DISCUSSION OF THE FINDINGSIntroductionFirst Phase of Adjustment:Initial Realization of the DisabilityThe Parents’ Response“What have I done?”Excessive Caregiving DemandsThe Process of Acceptance BeginsSecond Phase of Adjustment:Parents’ MissionExtensive Caregiving Demands: Managing Day-To-DayThe Mission: Parents’ Search for HelpFormal supports: “No choices”Multiple Roles of ParentsParents’ role as teacherParents’ role as physical therapistParents’ role as monitorParents’ role as facilitator of information toprofessionalsThe Process of Acceptance ContinuesParent’s wholistic perspective: a bridge toacceptanceAcceptance ContinuesIntroduction 9Philosophical Tenets of Phenomenology 10Parental Stress and Burden 14Future Planning 24Synthesis of Current Knowledge 30CHAPTER 3: METHODSDescription of DesignSample Selection and Criteria .Description of ParticipantsParticipant RecruitmentData Collection ProceduresData AnalysisTruthworthiness of Research MethodologySummary545859596466676870717575767781828388VThird Phase of Adjustment: Future Planning -Who Cares for my Child when I Die?” 90Facing Their Adult Child’s Uncertain Future 91Facing one’s mortality 91Continuing the role as monitor 93Preparing to ‘Let Go’: Developing a Social Network . 95Acceptance of One’s Self and One’s Self as a Parent 102Acceptance of One’s Life as it Has Been 105From the Everyday Experience of Caregiving to anExistential Meaning 109Summary 112CHAPTER 5: CONCLUSIONS AND IMPLICATIONSConclusions 117Summary of Findings and Implications for Social Work 119Implications for Future Research 127Summary 128References 130AppendicesAppendix A - Demographic Data 133Appendix B - Agency Approval 134Appendix C - Initial Contact Letter 135Appendix D - Participant Consent Form 136Appendix E - Interview Guide 137Appendix F - Ethics Approval 140Appendix G - The Experience 141“As I get older I realize the most valuablething I have to share is my story.”Mildred Dehaun, mother1CHAPTER 1IntroductionIn 1981, the government of British Columbia made acommitment to deinstitutionalization by closing the threeProvincial institutions - Tranquille, Glendale and Woodlands -providing care to people with mental and/or physicalhandicaps. Experts1 described the initial services providedby these institutions as places of safety and rest for theperson with a disability and the families concerned for theircare. For elderly parents who believed institutionalizationwas in the best interest of their child with a disability, thereturn to community living recalled a time when there existedlimited resources and community rejection towards people withdisabilities. Experts reported that the commitment tocommunity living evoked feelings of fear, worry and guiltamong many parents in spite of assurances parents were giventhat community based services would be available to meet theirson/daughter’s needs.In addition, with the continued movement towardsdeinstitutionalization, the current emphasis on communityliving and community—based health care, and the decreasedmortality rate among persons with disabilities and the parentscaring for them, professionals will see a rise in the number1 ‘Experts’ represents professionals in the social servicefield who have extensive knowledge of, and experience with,parents of children with disabilities - including parents whosechildren were institutionalized prior to 1981. These expertsprovided verbal background information for this study.2of aging parents caring for adult sons and daughters with adisability (Brunn, 1985; Smith & Tobin, 1989). Only recently,however, has the literature begun to examine the needs andconcerns of aging parents who have and continue to care fortheir adult child. In order to add to our knowledge aboutthis growing population, this study will focus on theexperiences of aging parents, and seeks to discover anddescribe their perceptions of caring for a son or daughterwith a disability in the community.With continued research on this population, the pressingquestion facing parents becomes: What will happen to my childwhen I die or am unable to provide primary care? Implicit inthis question are three areas needing further investigationand study. To begin with, the question of who will care forthe adult child with a disability when the parent is no longerable to care for him/her reflects the transition of parentsthrough their own aging (Brunn, 1985). In addition, thisquestion recognizes the lifelong commitment of many parents tocare for their child with a disability often with little or noformal support, but it also raises the question of the impactsuch a lifetime of caregiving has on parents and theirfamilies.The literature to date has focused on various aspects ofaging parents’ needs and concerns regarding the caretakingresponsibilities involved with an adult son/daughter with adisability (Kazak, 1987; Minnes, 1988). This literature has3attempted to address some of the effects this lifetime ofcaring has on parents and families. However, the literaturehas revealed that these studies have typically assumed suchfamilies are dysfunctional (Brotherson, Turnbull, Bronicki,Houghton, Roeder—Gordon, Summers, & Turnbull, 1988), and hasemphasized the “problems and difficulties families face”(Foster & Berger, 1985, p. 748). This has resulted in studiesthat have neglected the reciprocal effects of a child with adisability on parents and family members, and the positivecontributions such a child may have on the family system. Inaddition, most of the literature has reflected data gatheredfrom mothers; but where samples include both parents, mothersappear to be disproportionately represented.There also has been minimal discussion and research on theimpact of social systems (e.g., extended family, friends,agency supports) and cultural attitudes that effect parentaladjustment to, and ability to care for their son/daughter witha disability over a lifetime (Foster & Berger, 1985). Oftenthe literature reflects a negative bias whereby the impact onfamilies who care for a child with a disability is seen toresult in “stress, problems, and presumed negative outcomes”(Foster & Berger, 1985, p. 773). Such research may in fact bemissing a great deal as it presupposes a definition of whatthat experience has been for parents. Furthermore, there arefew longitudinal studies examining the ways the disabled child“affects and perhaps alter’s a family’s interaction” (Foster &4Berger, 1985, P. 772) at different developmental stages. Thisresults in limited information regarding the effects ofraising a child with a disability over a lifetime. The lackof a life—span perspective in the research also limits ourunderstanding of parents’ interpretation of, and adjustmentto, the presence of a child with a disability in their livesover a lifetime.The objective of this study was to understand parents’lifetime of caring in order to elicit information that willguide the appropriation of timely services that are sensitiveto, and respectful of, aging parents’ needs and concerns.Since much of the research to date has neglected the totalityof aging parents’ experiences, with a tendency to presume suchexperiences as negative, this study will undertake thequalitative inquiry of phenomenology, which makes no a prioriassumptions as to what the experience may have been forparents. As such, phenomenology seeks to elicit the meanings(Morse, 1986) parents have given to their experience raising achild with a disability, and to facilitate an understanding(Morse, 1986) of what that experience has been in itstotality, thus providing a description of parents’ experiencesthat is more wholistic than the research represented to date.The research method of phenomenology chosen for this studyutilized life documents — the individual’s narrative — as aninstrument to elicit parents’ stories — descriptions,interpretations and meanings of their lifetime of caring.5Through semi—structured interviews with aging parents, variousthemes have been extrapolated from the data gathered with theaim of developing rather than testing theory (Morse, 1986).The findings of this study indicated parents’ experiencesraising a child with a disability can be conceptualized interms of three phases of adjustment with each phase beingcharacterized by common themes.These phases of adjustment are presented in detail inChapter Four. Briefly, however, the first phase of adjustmenthas been identified as the “Initial Realization of theDisability” when parents began to realize their child had aphysical and/or mental handicap. This phase was characterizedby parents asking the question: “What have I done?” andinvolved tremendous caregiving demands which resulted inenormous stress and exhaustion. During this phase, theprocess of adjusting and accepting their child’s disabilitybegan.The second phase of adjustment was represented as“Parents’ Mission” and depicted the continuation of parents’extensive caregiving responsibilities, and their concertedefforts to develop their child’s abilities through the ongoingstruggle to find appropriate programs and elicit professionalservices. During this phase, mothers and fathers adopted manyroles in an attempt to meet their child’s needs day-to-day -e.g., teacher, physical therapist, monitor of their child’s6programs and services, and facilitator of information toprofessionals.As well, parents’ descriptions of their experiencesindicated that accepting their child’s disability and itsimpact on their lives was a ‘journey’ that began when theyrealized their child had a disability and continued throughthis second phase of adjustment. Professionals who adopted awholistic perspective towards the child with a disabilityhelped parents with the process of accepting their child’shandicap and its effects on their lives. During this phase,parents began both to accept the finality of their child’sdisability and to recognize their own accomplishments ashis/her parent.The third phase of adjustment was identified as “FuturePlanning: Who Cares for my Child When I Die?” This phaseencompassed parents’ recognition of their mortality and theneed to face their child’s uncertain future. Parents’continued their role as monitor of their adult child’s care inspite of their advancing years and declining abilities.During this phase, parents began to realize they would one daybe unable to continue their caregiving role, and began theprocess of ‘letting go,’ characterized by the development ofsocial networks. Social networks was a formalized way parentsplanned for the future care of their adult child when theywere no longer able to continue their caregiving roles.In addition, parents’ vivid accounts of their experience7illustrated that the process of acceptance, which continuedthrough the third phase of adjustment, included two centralthemes: acceptance of one’s life as it has been; and parents’ability to move from the everyday struggle of caring for theirdisabled child to an existential meaning of what thatexperience had been for them. This aspect of acceptanceinvolved parents balancing the sadness, loss and struggle ofraising a child with a disability with the joy, satisfactionand accomplishment of a lifetime of caring. By eliciting thetotality of parents’ experiences and allowing them to recountboth positive and negative aspects, these parents haveportrayed something important about the experience of agingparents caring for the adult child not found in the literatureto date.Given the increasing numbers of adults with mental and/orphysical disabilities who will become members of ourcommunities, the experiences of aging parents caring for ason/daughter with a disability could have significantimplications for government budgets, social policies andcommunity programs. Social workers will need to understandparents’ perception of a lifetime of caring in order toprovide appropriate, timely services that acknowledge parents’unique issues of aging, as well as their continued roles andresponsibilities as caregivers to a dependent adult child.With the purpose of bringing both parents’ views forward, theresearch question guiding this study will be: What are theexperiences of aging parents caring for their adult son!daughter with a disability in the community?89CHAPTER 2Literature ReviewIntroductionA review of the literature reveals little research relatedto aging parents’ experience of raising a child with adisability. In an attempt to understand aging parents’experiences, research findings describing the experience ofyoung families raising a child with a disability have beendrawn on, as well as the findings related to the needs ofcaregivers of the elderly (Seltzer & Krauss, 1988). Given theunique transitions of aging, this literature is inadequate tounderstand the needs and concerns of aging parents.Only recently, however, has the literature begun toreflect an increased awareness of the growing number of agingparents caring for their adult son/daughter in the community.The studies that reflect this increased awareness includelittle Canadian content. In addition, most of these studiesemploy quantitative methodology primarily focusing on oneparticular aspect of parents’ concerns, failing to attend tothe totality of parents’ lives, including the positiveinfluences of the adult son/daughter to parents and families.A full exploration of aging parents’ perception of theirlifetime of caring has not been undertaken beyond anecdotalaccounts which describe some aspects of parents’ experiences.Parent narratives, however, have revealed some evidence of the10positive contribution a child with a disability makes to thelife of families (Summers, Behr & Turnbull, 1989;Featherstone, 1980), suggesting the importance of researchmethodology in eliciting the totality of their experience. Asa result, the research method of phenomenology was chosen toexplore aging parents’ perception of a lifetime of caring insufficient depth to allow parents to describe the positive andnegative affects caring for a child with a disability has hadon their lives.The purpose of this review is to discuss the philosophicaltenets of the phenomenological methodology chosen for thisstudy, and to situate the experiences of aging parents caringfor an adult child with a disability in the context of what isknown and what is not known.Philosophical Tenets of PhenomenolociyAs previously mentioned, much of the literature on agingparents caring for their adult child with a disabilityreflects quantitative research, which represents positivisticassumptions concerning reality. Such assumptions, or ways ofunderstanding the world, are based on the belief that there“exists an ultimate truth — a natural law — of reality”(Crabtree & Miller, 1992, p. 8), emphasizing the existance of“reliable and valid laws in explaining and predicting humanbehaviour or experience” (Ornery, 1983, p. 54). The researchmethodologies derived by positivistic sensibilities are11reductionistic and deterministic, requiring that the data “bereducible to the researcher’s operational definition” (Ornery,1983, p. 60), and the object of the inquiry be broken down toits smallest parts, each to be analyzed and examinedindividually. As such, the objective of quantitative researchis “causal analysis” with the belief that “measurementprecedes existence” (Omery, 1983, p. 54).Such an a priori view of the experiences of aging parentshas led to research which investigates one or more aspects ofthe needs and concerns of aging parents by focusing on someelement of the aging person’s experience as caregiver to ason/daughter with a disability - e.g., burden, stress, futureplans for care, etc. Often these studies reflect a negativebias on the impact on parents’ caring for their child with adisability. Such definitions reflect established theoriesthat assume aging as loss (Benner & Wrubel, 1989) anddisability as disruption and stress (Turnbull, Summers &Brotherson, 1986) and result in research inquiries which leadto a fragmented exploration of parents’ experiences.Plummer (1983) states that “much of social research isdominated by the search for the generalizable laws” (p. 2) andan emphasis on the scientific norm that begin to obscure the“concrete joys and suffering of active human beings...encourage[ing] a premature theoretical closure and a totteringtowards suresafe absolutism” (Plummer, 1983, p. 4). Suchresearch may in fact be missing a great deal because it12presupposes a definition of what that experience has been forparents. Benner and Wrubel (1989) state:...researchers devise ways of conceptualizing,organizing and describing personal meanings not interms of specific content over a lifetime but inabstract or generalized categories to which groups ofpeople might belong (p. 34).In contrast, Lincoln and Guba (1985) discuss the tenets ofqualitative inquiry as replacing the “naive realism” inherentin the assumptions of quantitative research with the“assumption of multiple constructed realities” (p. 295). Theystate:“Reality” is now a multiple set of mentalconstructions . . . those constructs are made by humans;their constructions are in their minds, and they are,in the main, accessible to the humans who makethem...(p. 295).Qualitative research, as suggested by Sandelowski (1994), canbe conceptualized as a crystal - “a multifacited view ofreality” — and, as such, is “aimed at the search for meaning”(Guba & Lincoln, 1985, p. 157). Qualitative inquiry attemptsto avoid “reducing people to statistical aggregates” (Bogdan &Taylor, 1975, p. 4). Instead, it acknowledges that much ofthe human experience — e.g., ideas, feelings and motives — canbest be discovered, described and understood by employing amethodology that “gives attention to. . . the ways the phenomenaappear in different perspectives and modes of clarity” (Ornery,1983, p. 51).As one approach to qualitative research, phenornenologicalmethodology seeks to “investigate and describe all phenomena,13including the human experience, [and] the ways these phenomenaappear in their fullest breadth and depth” (Ornery, 1983, p.50), including the meaning of the experience to theparticipants. Phenornenology is a “holistic approach tostudying deep human concerns” (Pallikkathayil & Morgan, 1991,p. 195). In addition, its value base acknowledges thespiritual, emotional and physical aspects inherent in one’sunderstanding of one’s experience, and recognizes theuniqueness of each individual as well as the wisdom of his/herunderstanding of that lived experience (Pallikkathayil &Morgan, 1991).Phenornenological research method was chosen to explore theexperiences of aging parents because it is consistent withthis researcher’s values and is a methodology that allowsparents to speak about their experiences directly, and makesno preconceived assumptions about what that experience hasbeen for, or meant to, parents. From the phenornenologicalperspective, then, this study seeks to understand (1) how theexperience of caring for an adult child with a disabilityaffects aging parents, and (2) what the elements — or themes —are that make up this experience.The qualitative method of phenornenological research usedin this study involved gathering data through tape-recordedinterviews of parents’ accounts of their experiences ascaregivers of a child with a disability. This data thenbecame the text from which themes and concepts were identified14and theories developed. Phenomenology attempts to reconnectthe frequently overgeneralized, theoretical accounts of humanexistence with the “everyday experiences and activities”(Craib, 1984, p. 83) of the individual. For this reason,phenomenology builds theory from the meaning aging parents’ascribe to their lived experience.In addition to discussing the phenomenological methodologyguiding this research study, a review of the literature isalso important in order to situate the experiences of agingparents caring for their son/daughter with a disability in thecontext of what is known and not known. The availableresearch on parents’ experiences was represented by two bodiesof literature — Parental Stress and Burden and Future Planning- which will be discussed in the remainder of this chapter.Parental Stress and BurdenFrom the perspective of family stress theory, Minnes(1988) examined the relationship between the characteristicsof the mentally handicapped child and the family’s resourcesas potential factors in predicting maternal stress raising achild with a disability. Minnes’ quantitative study involved60 mothers who attended an outpatient clinic in Toronto.Mothers were first interviewed and then asked to complete fourself—administered standardized questionnaires designed tomeasure parental stress, internal and external familyresources, and child and parent characteristics. The results15of this study indicated that child characteristics (e.g., typeand degree of handicap, age of child) and family crisis-meeting resources (e.g., family relations, internal andexternal resources) emerged together as significant predictorsof stress associated with the following variables: limits onfamily opportunity, life—span care, finances, and personalburden. However, in all cases, family crisis—meetingresources were two to four times greater predictors of stressthan the characteristics of the mentally handicapped child.In addition, “family stress alone emerged as significantpredictors of stress associated with dependency andmanagement, family disharmony, lack of personal reward”(Minnes, 1988, p. 189), while the characteristics of thementally handicapped child was a significant predictor ofstress associated with the cognitive and physical impairmentof the child. As well, the degree of the child’s disabilitywas also found to be a significant predictor of stressassociated with family opportunity, life-span care, physicallimitations and personal burden.Additionally, the age of the child was associated withparental stress, with the child’s cognitive abilities becomingless of a concern for mothers over time, and stress associatedwith the preference for institutionalization increased withage. Minnes suggested that as mothers age, they may becomemore accepting of their child’s limitations; however, theauthor speculates that mothers may also find the child’s care16demands “can cause considerable disruption to family life” (p.190) leading them to begin considering institutional care.This study also suggested that mothers’ perception ofstress did not depend on the type of handicapping condition.In contrast, the type of mental handicap did appearsignificant in a study conducted by Seltzer and Krauss (1989),designed to measure the perceived levels of maternal health,life satisfaction, feelings of burden and stress, and familialsocial climate and support. The results indicated that “lowerlevels of burden and parental stress were found for motherswhose adult children had Down Syndrome than for mothers ofthose whose retardation was due to other factors” (Seltzer &Krauss, 1989, p. 310). The authors suggested this may be theresult of greater knowledge, developmental predictability andknown causes of this type of mental disability.Seltzer and Krauss (1989) further reported that “higherlevels of parenting stress was associated with the mother’sreceipt of a greater number of formal services” (p. 308). Inaddition, Lutzer and Brubaker (1988), in their survey of 155families in Ohio, also revealed that as the age of parentsincreased, so did their need for “temporary out-of—home livingarrangements” (p. 14) for their son/daughter with a mentalhandicap. Given the present climate of deinstitutionalization, Seltzer and Krauss (1989) suggest mothersconsidering residential care may, in fact, face increasedstress due to negative public opinion towards out—of—home care17and the low availability of resources.Minnes (1988) also reported that mothers who indicatedhigh levels of stress associated with increased life span careand physical limitations of their mentally handicapped childalso reported higher levels of professional and agencyinvolvement. This finding was cited by Wilgosh, Waggoner andAdams (1988) as well, who suggest that professionals may notbe meeting “the type and degree of professional support” (p.190) needed by mothers. Since increased formal supports aretraditionally expected to decrease parental stress associatedwith caring for a child with a disability, professionals andpolicy makers will need to examine the effects of possiblebureaucratic obstacles to parents accessing needed resources,as well as the attitudes conveyed by those administeringsupport.Although the methodologies used in the studies cited abovebegin to identify variables contributing to feelings ofparental stress and burden, such research is limited in itsability to explore the complex and changing factors involvedin parental attitudes, concerns and needs over time. Somecontradictions and unexpected results have emerged regardingthe relationships among such variables as parental stress andage, and the characteristics of the adult child with adisability.For example, while Seltzer and Krauss (1989) did find apositive correlation between mothers’ feelings of stress and18burden and the risk factors of the mentally handicapped child(e.g., etiology and severity of disability), their study alsoindicated maternal risk factors (e.g., socio—econoinic level,years of education, marital status) and family social climate(cohesion, expressiveness, communication, recreation) moststrongly pertained to mothers’ sense of well—being. Inaddition, when compared to their age peers and caregivers ofthe elderly, mothers of this study indicated substantiallygreater health, higher morale, and no more burden or stress“despite the long duration of their caretaking roles, anddespite the unique qualities of their children” (p. 309).The methodology used in this quantitative study reflectsthe bias that having a child with a disability presents agreater stressor, and will effect parents’ sense of well—beingmore negatively than other major life events facing parents.While parents of a disabled child will encounter uniquestresses beyond the experiences of “more typical families”(Wilgosh, Waggoner & Adams, 1988, p. 255), the findingssuggest the stressors inherent in raising a child with adisability may not be perceived by parents as any morestressful than other unexpected and challenging circumstances.As well, these findings indicate there are many factorscontributing to the impact of a child with a disability onaging parents. As Seltzer and Krauss (1989) suggest, therelationship between parents’ sense of well—being, stress andability to continue caregiving over a lifetime “appear more19complex than initially assumed” (p. 310). Further research toinvestigate the meanings parents give to their child’sdisability, the impact that disability has on their lives overa lifetime, and the feelings parents have towards formalsupport as they age, is needed to provide direction forsensitive and timely delivery of programs and servicestargeting this growing population.In an attempt to understand parental levels of stress andburden associated with caring for a child with a mentalhandicap, Kaufman, Campbell and Adams (1990) interviewed 57parents aged 46—80 years receiving services in Alabama.Through structured interviews employing both open— and closed—ended questions, parents’ level of stress, burden and thechild’s level of adaptive/maladaptive behaviour were measured.The results indicated that parents’ feelings of burden andstress was positively related to the child’s maladaptivebehaviour. However, parental reports of stress were inverselyrelated to caregivers’ ages, and — consistent with otherresearch — was positively correlated with “time required forcare provision” (p. 48).In general, parents in Campbell and Adams’ (1990) studyreported moderate levels of stress and burden with nearly halfthe parents reporting “no particularly difficult problemsassociated with their caregiving responsibilities” (p. 48).Furthermore, an inverse correlation between the age of theparent and the level of stress was reported. The authors20suggest there may be multiple factors, such as culturalinfluences, parental beliefs, and the health of parents, whichmay influence parents’ perception of stress and burden. Aswell, the results that “older parents. . .reported lower stressthan younger parents may indicate that the older parents havecome to terms with the long—term care responsibilities moresuccessfully that younger parents” (p. 50). However, thefindings that older parents of adult children with adisability report less stress than younger parents is notsupported by Kazak (1987).Kazak (1987) who studied 252 families representing adultchildren from three different disability groups, and includingmatched control groups, found “the highest degree of personalstress for the parents of the older, mentally retardedchildren could be related to parental age, child age, thenature of mental retardation, or the process ofinstitutionalization” (p. 144). These findings were alsoconsistent with the research conducted by Wilgosh, Waggonerand Adams (1988), who present one of the few qualitative,Canadian studies on parents caring for a child with adisability available in the literature.The limitations of the studies conducted by Kazak (1987),and Kaufman et al. (1990) lie in their methodology.Quantitative research designed to measure the degree of stressand burden only allow for speculation regarding the multiplefactors contributing to parents’ perceptions of stress, and21consequently leads to an incomplete understanding of agingparents’ needs and concerns over time. Phenomenologicalresearch, with its goal of describing parents’ experiences,would allow parents to reveal what has been most meaningful tothem regarding their parenting experience with the purpose ofbetter understanding their changing needs and concerns overtime.Wilgosh, et al. (1988) conducted a qualitative studyinvolving unstructured interviews with 23 parents of childrenwhose mental handicap ranged from mild to severe, with agesranging from 6 to 19 years. In an effort to understand thestress experienced by families with a child with a disability,and to examine “parent—professional relationships”(p.256),parents were asked to “describe what parenting (name of child)has been like for [them]” (p. 257).The results indicated that for all disability groups, theemerging themes included: parents’ comments on their emotionalstress; future care needs of the child; multiple parentalroles as a result of their active involvement in their child’scare; significant effects on the family as a result of thepresence of the disabled child; and both positive and negativerelationships with profession and agency supports. The orderof importance parents gave each of these themes differed withregard to the severity of the child’s disability. Forexample, future concern for the child’s care needs was rankedmore important among parents of children with severe22disabilities, and the care demands of the child increased withthe “age and size of the child” (p. 258). The effects on thefamily regarding the presence of the child with a disabilityincluded: effects on siblings, “strong within-family support”(p. 258), and time demands required to care for the child witha disability.The benefit of this study lies in its qualitativemethodology. Parents were given the opportunity to speakabout both the negative and positive aspects of caring for ason/daughter with a handicap. The results suggested there areboth similarities and differences among families caring for achild with a disability, depending on the severity of thehandicap. These differences in parental concerns may haveimplications as to what programs, services and support systemsparents who are caring for children with varying types anddegrees of disabilities require.As well, the results of this study point to the need forprofessional sensitivity and awareness of parents’ roles andresponsibilities as caregivers and the impact such caregivinghas on parents and the familial system. Such professionalawareness is a critical component to minimizing conflictbetween parents and professionals, and developing a “mutuallysupportive parent/professional partnership” (Wilgosh, et al.,1988, p. 259) with the goal of assisting parents to care fortheir child at home.The limitation of this study is that no aging parents were23interviewed and so the experience of aging parents remainsunexplored. This study suggested that concerns about thechild’s future care needs increased as parents and theirchildren age, and in relationship to the severity of thechild’s disability. Qualitative research that addresses theexperiences of older parents will add important informationregarding the particular needs of this population.The literature regarding parental stress and burdenreveals the growing need for continued research into the needsand concerns of aging parents who provide long—term care to anadult child with a disability. This need is based on therealization that there is an ever increasing number of agingparents continuing their caregiving responsibilities well pastthe normative stage of parenting. And, in spite of theresearch which is emerging, there remains a gap in identifyinghow best to provide services for aging parents in ways thatreflect their own process of aging, and their unique roles andresponsibilities as parents providing care for a son/daughterwith a disability (Foster & Berger, 1985; Lutzer & Brubaker,1988).Because caregiving responsibilities continue throughoutparents’ lives, future plans must be made for parents’caregiving role to carry on once they die. The second body ofliterature reflects the importance of future planning forparents when they are no longer able to continue theircaregiving role.24Future PlanningIn addition to the research addressing parental stress andburden, there is another body of literature which speaks toparental need for future planning as a critical andfundamental component to assist parents through their owndevelopmental transitions, and to lessen the burden ofcontinuous caregiving responsibilities of aging parents.As a result of her clinical experience with parents over65 years old who care for a child with a disability, Brunn(1985) addresses the importance of future planning to agingparents. Using the framework of developmental theory, Brunnbelieves it is critical to assist aging parents to acknowledgethe ending stage of their life by addressing issues ofmortality and accepting their life’s work as parents. Brunn(1985) writes:.parenting was their life’s work. Success in theirwork means being able to die in peace; a sense offailure interferes with the need to be reassuredabout their legacy and their right to die (p. 136).A critical component in this process, according to Brunn, ispermanency planning for parents’ adult child with adisability. Permanency planning involves parents preparingfor the future care needs of their adult son/daughter oncethey are unable to continue their caregiving role. In dealingwith the primary care needs of their adult son/daughter, theparent is then able to address his/her own development tasksassociated with aging.The benefit of this non-researched based study is that it25highlighted the particular issues of aging, such as “control,autonomy and dependency” (Brunn, 1985, p. 133) facing manyaging parents with an emphasis on the added demands presentedto parents as a result of caring for a dependent adult child.The limitation, however, is that the problems, needs andconcerns of aging parents were presented from the perspectiveof the professional, not of aging parents. The process ofaging presented by Brunn is primarily one of loss andunfinished business, and the experiences of aging parentschosen for discussion are mostly negative. Brunn (1985) makesthe assumption that most “parent/child relationship[s] havebeen symbiotic”(p.136), that “such a parent has littleobjective understanding of the problems of the child” (p. 137)and that part of parents’ frustration in allowing someone elseto assist in the care of their child is a result of “their ownunfulfilled needs to be parented” (p. 137). Brunn does notrepresent the strength and wisdom demonstrated by many agingparents who have met the challenges and demands of a lifetimeof caring.Brotherson, Turnbull, Bronicki, Houghton, Roeder—Gordon,Summers and Turnbull (1988) examined the frequency with whichfamilies plan for the future needs of their adult son/daughterwith a disability, and utilize support in the planningprocess. Also examined was the association between socialsupports and future planning, and levels of familyfunctioning.26Their study included families of adult children with bothmental and physical handicaps who were over the age of 18 andliving with their parents. The level of the adult child’sdisability was reported by parents to be evenly distributedfrom mild to severe. The study consisted of telephoneinterviews which utilized standardized survey questions andsemi—structured interview questions.The results of this study indicated there was nodifference in response patterns between parents caring for achild with a physical or mental disability regarding their“use of social supports” and “frequency of planning for adultneeds” (p. 168). When parents were asked what their greatestneed in future planning was, their most frequent response wasa need for residential options in the community, followed bysocialization for those adults with a mental handicap, andemployment/vocational choices for those with a physicaldisability. In addition, this study indicates that parents doplan for the future needs of their adult son/daughter, andthere is a positive correlation between frequency of planningand use of social supports, and effective family functioning.These results suggest the importance to families of parentsbeing able to plan for their son/daughter’s future, and ishelpful information in an effort to understand the needs ofaging parents.The strength of the studies conducted by Brunn (1985) andBrotherson et al. (1988) is the degree to which they27acknowledged the importance of services and programs toaddress the future planning needs of aging parents, and therecognition of the systemic relationship between the careneeds of the adult son/daughter and the concerns of agingparents.This literature also highlights the lack of communityresources available to aging parents caring for the adultchild with a disability. In fact, the parents themselves areoften considered as the resource, not as recipients ofresources. Most services focus on the needs of the adultchild with a disability (Grant, 1990; Kaufman, et al., 1990;Smith & Tobin, 1989) while frequently overlooking orminimizing the needs of the aging parent.Research addressing the totality of parents’ experiencesis needed to elucidate the ongoing concern regarding thefuture care of the child with a disability and the affect thisconcern has on the aging process of parents. Quantitativestudies seeking causal relationships between children withdisabilities and the impact on parents’ lives often provide a“simplistic reduction and abstraction of a part” (ornery, 1983,p. 61) of parents’ lives. Phenomenological researchrecognizes the “whole may be quite different from the sum ofits parts” (Omery, 1983, p. 60). As such, the underlyingvalues and beliefs of phenornenology direct the researcher toexplore the experience of aging parents as a phenomenon thatis “holistic and meaningful” (Omery, 1983, p. 62), and28considers parents’ past, present and anticipated future joysand sorrows as constituting the meaning of aging parents’experiences. As Benner and Wrubel (1989) state, “. . .personalmeanings determine what coping options are available but theydo not prohibit possibility” (p. 187); thus, as professionalsseek to understand what ‘personal meanings’ parents attributeto the presence of a child with a disability in their lives,parents can be assisted to both recognize and create newconditions for possibility.Grant (1990) conducted a study in Wales to identifyparents’ attitudes towards the future care needs of theiradult child with a disability. One hundred aging parents wereinterviewed twice, with a two year gap between interviews.The results indicated that nearly half of the parents hadmajor changes in their choice of future care. Grant (1990)writes: “Against the background of commitment and deepconcern, major swings in carers’ hopes and expectations forthe future are taking place” (p. 363).Further analysis illustrated that social context variables(e.g., loneliness of parent, social class, available supportfrom kin and friends) were found to be more significant thanphysical care needs of the adult child and the age of theparent in their consideration of residential placement. Grantstated:Of particular note in the present study is the way inwhich social support and loneliness appear to be suchdominant influences and override child—relatedvariables such as physical dependency and presenting29problem behaviour in their effects of anticipatedcare options (p. 371).Grant acknowledged that the results of his study onlybegin to explain aging parents’ attitudes about the futurecare needs of their son/daughter. However, the strengths ofGrant’s study lie in both its qualitative and quantitativemethods of data collection. Grant extrapolated themes fromparents’ stories about their considerations of future careplanning, and from these common themes, has attempted tostatistically analyze key variables in order to identifyimportant associations between various independent variablesand particular parental decisions regarding future careplanning.Grant’s study emphasized the numerous factors involved inunderstanding aging parents’ commitment and concern for thecare of their adult disabled child both in the past and forthe future. In addition, his study highlighted the criticalrole future planning plays in the lives of aging parents. Theresults also suggested that professionals must be cognizant offactors constituting aging parents’ social context — such asfriendship/kinship support, social class and loneliness — whenattempting to understand and address their needs. Tounderstand parents’ social context, means taking intoconsideration both the positive and negative influences thepresence of a child with a disability has had on parents andfamilies, as well as the meanings parents give to theirlifetime of caregiving. Grant stated:30That the support and well-being of such a largenumber of mentally handicapped adults should lie inthe hands of so many elderly people whosecontribution is still largely unrecognized andunsupported represents yet another way in whichsociety fails to value its oldest citizens Ifthe experiences of a lifetime still have anything tooffer the world in wisdom and reflection, thenfurther longitudinal and qualitative studies of oldercare—givers in different cultural contexts are calledfor as a matter of considerable urgency(p.372).Furthermore, parents’ social context will influence thepersonal meanings they give their experiences as a mom/dad toa child with a disability, and these meanings will inform whatparents consider to be future needs and acceptablepossibilities. Professionals assisting aging parents in theirefforts to continue their role as caregivers and negotiatetheir own process of aging must be cognizant of these factorsin order to better address parents’ needs.Synthesis of Current KnowledgeA review of the literature demonstrated an incomplete andinconclusive understanding of aging parents’ experience of alifetime of caring for a child with a disability. Theliterature revealed empirical studies which have utilizedquantitative research methods, and consequently, have examinedthe experiences of aging parents in terms of a few variablessuch as stress and burden. Such research frequently neglectsthe positive contributions such a child may have on parents’lives, and often presumes parents’ experiences to be negative.Quantitative studies neglect the totality of parents’31experiences, and typically make assumptions as to whatstressors and needs are for aging parents. Parents’ concernsmay be very different from what professionals believe to beimportant; also, the research indicates the complexityinvolved in understanding what factors contribute to agingparents’ ability to care for their adult child with adisability.There is, in addition, a lack of qualitative research thatseeks to discover and describe the experience of aging parentswho care for their adult son/daughter with a disability. Muchof the research which does exist, reflects younger parents’experiences. The studies which address the concerns of agingparents frequently focused on future planning issues only.Most studies reviewed do not incorporate Canadian content.In order to consider the totality of parents’ experiencesand in an attempt to offer a more wholistic perspective to theresearch conducted so far, the inquiry undertaken in thisstudy employs the qualitative design of phenomenology in anattempt to discover and describe aging parents’ experiencescaring for a son/daughter with a disability. Further studyinto the needs of aging parents is essential as professionalsin the fields of gerontology and developmental disabilitiessee an increasing rise in the number of aging parents caringfor their son/daughter with a disability.32CHAPTER 3MethodsDescription of DesignThe research question guiding this study directed theresearcher to the exploratory design of phenomenology.Phenomenology seeks to “understand all data in the experienceunder study from the perspective of the participants. . .and theeffect that perspective has on the lived experience. . . of thatindividual” (Omery, 1983, p. 50). Phenomenology isappropriate to the investigation of aging parents’ caring fortheir child with a disability because it provides a morecomplete picture as to what that experience has been forparents than has been presented by quantitative research, todate. As well, phenomenological methodology is congruentwith the values of this researcher and respectful of theparticipants of this study.Sample Selection and CriteriaGeneralizability and representative sampling in thestrictest sense is not the aim in qualitative research.Instead, the criterion of applicability whereby “the findingsof a particular inquiry have applicability in other contextsor with other subjects” (Lincoln & Guba, 1985, p. 290) is thegoal. The purpose of phenomenological research is to“facilitate understanding, for description, and to elicit33meaning” (Morse, 1986, p. 184). Sample size therefore remainssmall as a great deal of verbal data is elicited fromparticipants who are able to articulate and “illuminate thephenomenon being studied” (Sandelowski, 1986, p. 31). Assuch, theoretical or purposive sampling was chosen because theresearcher was “familiar with the setting and the actors”(Morse, 1986, p. 184) and hoped to locate participants whocould adequately express the meaning of their experience with“accuracy, precision, and completeness” (Morse, 1986, p. 185).Selection criteria, therefore, included mothers and fatherssixty years and older caring for their adult son/daughter witha disability in the community, either in their own or grouphomes. Participants of this study had not experienced theirchild living in an institution for the mentally/physicallyhandicapped. The researcher was interested in informationabout parents’ experiences with their son/daughter’stransition into adulthood; therefore, the adult children ofthe participants in this study were twenty-five years andolder. No subjects fitting the sample criteria andvoluntarily choosing to participate in this study wereexcluded.Description of ParticipantsGiven the financial and time limitations of theresearcher, a sample size of five was chosen. The goal ofthis phenomenological study was to accurately describe the34experience of aging parents caring for their adultson/daughter with a disability, and aimed for “quality,completeness” (Morse, 1986, p. 185) of the data. Initially,four mothers and two fathers were interviewed for this study;however, after interviewing one mother, it was decided not toinclude her in the data analysis as she was unable toarticulate her experience in any depth or “completeness”(Morse, 1986) that allowed for an analysis of her experience.The parents who participated ranged from age 66 to 68years old. One mother was single as a result of divorce whilethe other two mothers were married to the fathers whoparticipated in this study. The married couples wereinterviewed individually without their partners present inorder to elicit their experiences separately. Therefore, thisstudy reflected in—depth interviews from three mothers and twofathers.It was determined that minimal demographic information wasrequired for this study. Therefore, to be the least invasiveto parents, only their age, the age of the adult child andhis/her level of disability was collected from participants inorder to provide a descriptive profile of participants(Appendix A). The parents interviewed were Canadian born,Caucasian and from middle—class, professional backgrounds.One mother had worked as a social worker throughout her life,while another mother had worked as an elementary schoolteacher prior to having children. The third mother in this35study had been a school teacher for children who were deafprior to raising a family. One father was a retired schoolteacher, while the second father had been employed by thefederal government. Their adult son/daughters were betweenthe ages of 31 and 34 years old and presently in semi-independent living situations in the community. Parentsidentified their adult child’s disability to be moderate tosevere. Their disabilities included autism, mentalretardation and cerebral palsy. These parents also had otherchildren in addition to their son/daughter with a disability.Participant RecruitmentParticipants were recruited through Planned LifetimeAdvocacy Network. Agency approval (Appendix B) was obtainedprior to selection of participants. An initial contact letter(Appendix C), which introduced the study, its purposes, andthe researcher, was sent to potential participants by theExecutive Director of Planned Lifetime Advocacy Network, andfollow—up telephone calls by the Executive Director wereconducted after letters were received. Interestedparticipants were then contacted by the researcher who morefully informed them of the study, and - for those who agreedto participate - arranged for the first interview.Participants were informed of their right to refuse toanswer any questions or withdraw from the study at anytime.36As well, confidentiality was ensured by stripping allindividual identifying information from the data collected.In addition, the transcripts were only read by the researcher,the transcriber and the thesis committee to ensure participantconfidentiality. Written consent (Appendix D) was obtainedfrom all participants at the onset of the first interview, andaccess to the results of the study were made available to allwho participated.Data Collection ProceduresData gathering procedures and analysis were conductedaccording the methods of Giorgi (Ornery, 1983). Interviews area critical component to phenomenological research in that theyprovide one vital way to obtain the detail necessary toexplore the experience of participants in such a way as toIt let the experience unfold as it exists for the subject in anunbiased way” (ornery, 1983, p. 56). Through two semi-structured interviews with each participant utilizing aninterview guide (Appendix E), participants were asked todescribe their experience of parenting an adult son/daughterwith a disability. An interview guide was chosen in order toelicit parents’ description of their experiences raising achild with a disability, which included parenting at thevarious stages of the child’s development, the impact onthemselves and their families of a lifetime of caregiving,37external and internal support systems, and their thoughts andfeelings about the future. The interview guide providedminimal restrictions when eliciting the depth and breadth ofparents’ experiences, yet also provided a reference point forparents to begin their discussion. The open ended questionswere designed to allow parents to recount their experiences atwhatever point in time was meaningful to them and to elicitboth the positive and negative thoughts and feelings that mayhave occurred over time. The first interview utilized theinterview guide while the second interview provided anopportunity for clarification of participants’ meaning anddeeper inquiry into parents’ experience.The interview guide was pretested with one mother who fitthe sample criteria, with the exception that she had placedher child in an institution for a portion of her daughter’slife. Since the purpose of pre-testing the interview guidewas to determine whether participants would feel comfortablespeaking about their experience, and to determine whether ornot the trigger questions would elicit the depth and breadthof what that experience had been for parents, it wasdetermined that this mother represented the sample criterionsufficiently to participate in the pre-test. In addition, shehad been a professional social worker as well as advocate forher daughter with a disability and in this way held similarcharacteristics to those of the participants of this study.She herself was not a part of the sample population who38participated in this research inquiry. No changes were madeto the questions at that time as this mother found the openended questions had elicited her experiences in a comfortableand complete way. With the exception of the one mother whofound it difficult to reflect and articulate her experienceraising two handicapped sons, those parents who were includedin this study demonstrated no difficulty talking about theirexperiences. One of the fathers who participated in thisstudy stated at the end of the interview that “You’ve drawn meout pretty well” suggesting that the interview guide hadallowed him to recount his experience in depth.Interviews were conducted in parents’ homes in order to bethe least intrusive on parents’ time. In addition, allinterviews were audiotaped for accuracy of data collection.This data was then transcribed and the transcriptions becamethe data used for analysis. Audiotapes were destroyed at theend of the project, and all identifying information wasremoved from transcriptions. Interviews lasted approximatelyone and one—half hours, and the researcher was invited for teaeither during or after each interview.During the first interview, the researcher invited parentsto talk about their experiences of caring for theirson/daughter with a disability. In order not to disruptparents’ flow of discussion, at the end of the interview theresearcher asked participants to discuss in more detail topicswhich required further elaboration.39Prior to the second interview, each parent was given theirtranscript in order to ensure accurate transcription of boththe account and the meaning of their experiences. Thisadditionally allowed parents to review what they had saidduring the first interview before meeting for a second time,thus facilitating further discussion.Since all the participants shared very detailed storiesabout their child with a disability and their experiences ashis/her parent, a concern that confidentiality might becompromised should certain portions of the individualtranscripts be quoted in this study was raised by one mother.This concern prompted the researcher to review and discusswith each parent individually those specific, personal quoteswhich were lifted from their transcript as examples supportingthe conceptual framework developed to represent parents’collective experiences.Due to the unavailability of two parents, only threeparents were given the opportunity to veto the use ofspecific, verbatim quotes in the event they felt its use wouldviolate their confidentiality or misrepresent their experienceif taken out of the context of the entire transcript, and usedin the conceptual framework developed in this study (aspresented in Chapter Four). All three parents stated theywould be comfortable having the quotes appear in this study.For the remaining two parents who were not able to review thespecific quotes that were used as examples of their40experience, they were asked to review the transcript in itsentirety to be sure they would be comfortable if excerpts fromtheir interviews were used to highlight the conceptual modelof parents’ experience. These two parents also feltcomportable with verbatim quotes being used.By providing participants with the opportunity to reviewtheir transcript prior to the second interview and giving thema chance to authorize the use of specific verbatim quotes, theresearcher felt parents’ role as research participants wasstrengthened. As a result of being able to permit or deny theuse of specific quotes, parents were given more control overthe representation of their experience in the finalpresentation of the findings, and the trust between researcherand participants was deepened, which would encourage greaterdepth and breadth of information provided during the secondinterview.The second interview occurred for the purposes ofclarifying issues discussed in the first interview, as well asto invite further elaboration on topics that were introducedby participants during the first interview. The secondinterview also allowed the researcher to investigate theassumptions that she had been formulating during thepreliminary analysis of the first interview and to validatethemes that emerged from the interviews. Furthermore, thesecond interview allowed the researcher to present thepreliminary conceptual framework to three participants in41order to verify its credibility in representing theirexperiences. This conceptual framework incorporated the dataanalysis from only three parents’ interviews and had beendeveloped prior to the second interview with theseparticipants. The framework was therefore presented to threeparents for verification and further elaboration of theirexperiences. Due to the time constraints of the remaining twoparents, data analysis, to the point of including the themesof these two parents into the preliminary conceptualframework, had not been completed at the time of their secondinterview. Therefore, the framework was not presented tothese two parents. The second interview ended when theresearcher determined that an understanding of the experiencehad been gained and the “categories [were] considered‘filled’” (Morse, 1986, p. 186).Data AnalysisThe phenomenological method of data analysis was based onseveral sources which included Giorgi’s steps for dataanalysis, as presented by Ornery (1983), as well as the stepsoutlined by Anderson (1992). This process includedtranscribing data from audiotaped interviews and reading thetranscriptions “to get a sense of the whole” (Ornery, 1983, p.52). The researcher “bracketed” any preconceived ideas aboutthe experience being discussed. Bracketing is a technique42used in phenomenological research to eliminate, as much aspossible, the presence of researcher bias. Ornery (1983)states:The phenomenological method is approaching thephenomenon with no preconceived expectations orcategories, performing some form of bracketing todefine the limits of the experience, and thenexploring the meaning of that experience as itunfolds for the participants (p. 54).The interviews were transcribed by a typist. Uponreceiving the completed transcript, the researcher listened tothe tape while checking the transcript for errors, andnecessary corrections and changes were made. This processfurther assisted the researcher in formulating a sense of thewhole.The transcript was then read again, line by line, andpreliminary open coding was undertaken. Notes were made onthe transcript to indicate what was not clear and to beginidentifying micro—level units of meaning or themes. Theconcrete language of the participant was used at this stage.The transcript was then read several more times, veryslowly, to identify preliminary analysis using meaning unitsor themes. The process of moving from the micro—level, open—coding level of analysis, which utilized the participant’s ownlanguage, to examining the data for larger overarching themesenabled the researcher to gradually develop a preliminarycoding framework. As the process continued, subthemes wereidentified and elements of each theme and subtheme werearranged. The process of developing further codes and a more43extensive coding framework occurred with this process.Redundancies in themes or units of meanings were eliminated,and unclear meanings noted. These themes, or meaning units,were then transformed “into the language or concepts ofscience” (Omery, 1983, p. 58). Differences and similaritiesbetween participants were noted.The themes which emerged suggested some broader concepts,which were also noted. These concepts formed the basis of theresearcher’s preliminary assumptions about parents’experiences caring for their son/daughter with a disability,and was clarified further through the subsequent secondinterviews.In addition, as the themes developed, it appeared thatsome categories were redundant; therefore, one category wascollapsed into another. For example, there were originallytwo categories: “Multiple Roles of Parents” and “ParentalBehaviourial Responses.” It became apparent that “ParentalBehaviourial Responses” consisted of examples whichencompassed “Multiple Parental Roles” and therefore offered nonew insight into parents’ experiences.As well, the subtheme “Impact on Self” - originally foundunder “Self—Concept” — listed examples which were also foundwithin other categories such as “Parental Emotional Response”(e.g., “feeling helpless,” “very hard, very frightening”) or“Coping Techniques and Strategies” (e.g., feelings of “victoror victim” in regard to how one deals with the situation).44“Impact on Self” was thus omitted at this stage of analysis.In addition, the transcript was originally coded for thetheme “Coping Techniques and Strategies.” As the conceptualframework of parents’ experiences developed, however, it wasdecided that participants’ examples best illustrated a“Process of Acceptance,” and coding was changed at that time.During subsequent interviews, the researcher explored theconcept of acceptance with parents in greater detail in orderto elicit an understanding of its meaning to them over time.After reading the transcripts several times, it appearedthat the experience of parents encompassed a time sequence.The category “Phases of Adjustment” was therefore developedand sub—categories and key themes were then identified andorganized as elements within their respective time sequence.Throughout the process of data analysis, the researchercontinued to go back to the original research question andreviewed the primary goal of this research methodology inorder to help clarify and direct the development of themes andconcepts. The research goal was to describe parents’experiences, and the process of identifying themes thatemerged from the data was to be descriptive of what thatexperience had been like for parents.During the process of data analysis, a list of questionswas developed that directed the researcher to exploreparticipants’ meanings in greater depth. The process ofcreating this list helped the researcher “bracket” the45assumptions that were being made about parents’ experienceswhile simultaneously formulating broad concepts and earlyclusters of themes and subthemes. Information that wasunclear during the first interview was presented toparticipants for further elaboration. In addition, the broadconcepts and preliminary clustering of themes were synthesizedand integrated into a descriptive structure, which laterbecame the conceptual framework presented in Chapter Four torepresent parents’ experience raising their son/daughter witha disability. As mentioned previously, during the secondinterview, this conceptual framework was presented to threeparticipants2 to verify its accuracy as a representation ofwhat their experience had been. The data collected during thesecond interview was subject to the above review proceduresand, once again, the data from the second interview wasintegrated into the conceptual framework.Truthworthiness of Research MethodologyFor quantitative research, truthworthiness is typicallymeasured in the form of validity and reliability. Inqualitative research, however, truth value refers to the factthat the findings of an inquiry accurately represent the2 Due to the time constraints of the remaining twoparticipants, the conceptual framework was not presented to theseparents for verification. However, the general conceptscomprising this framework — e.g., phases of adjustment, journeyof acceptance — were discussed with these two parents duringtheir second interview in order to elicit further elaboration andclarification of their experiences.46experience of the participants. The truth value of aphenomenological investigation “resides in the discovery ofhuman phenomena or experiences as they are lived and perceivedby subjects, rather than in the verification of a prioriconceptions of those experiences” (Sandelowski, 1986, p. 30).As Sandelowski (1986) states, unlike quantitative researchwhereby “truth is research—defined,” qualitative methodologyemphasizes truth as “subject-orientated.” Truthworthiness inqualitative research then is measured according to thecriteria of credibility, applicability, dependability, andconfirmability.CredibilityIncreasing the probability of credibility in qualitativeresearch involves two tasks: the process of inquiry and theintegrity of the findings. The process of inquiry refers tothe methods and procedures employed to gather informationregarding participants’ experiences in such a way as toincrease “the probability that credible findings will beproduced” (Lincoln & Cuba, 1985, p. 307). Lincoln and Cuba(1985) state that one way of increasing the credibility isthrough prolonged engagement, which is the “investment ofsufficient time to achieve certain purposes” (p. 307) such asdeveloping trust, clarifying ambiguous or incorrectinformation, and generally providing “scope” to the phenomenabeing investigated.During each of the interviews, participants of this study47were given as much time as they required to articulate theirexperiences raising a child with a disability. The interviewguide utilized open-ended questions that provided minimalrestrictions when eliciting parents’ experiences, and eachquestion attempted to trigger parents’ descriptions as totheir experience raising a disabled child at various pointsduring their life. During these interviews, parents provideda rich and vivid account of their experiences as mom or dad toa child with a disability, and each of their stories allowedthe researcher to probe a broad range of issues related totheir experience — e.g., interactions with professionals;affects of, and tasks involved with, caregiving; and criticalconcerns and feelings at various points over time.One threat to credibility, as presented by Sandelowski(1986), occurs when the researcher becomes enmeshed withparticipants to the extent that it becomes difficult toseparate the researcher’s experience with that of theparticipant. Sandelowski (1986) suggests the possibility of“going native” (p. 30) can be offset by delineating the waythe “researcher influenced and was influenced” (p. 30) by theparticipants. The researcher’s attention to subjectivity wasattended to by the ongoing process of journaling during thephase of interviewing, and bracketing during the phase of dataanalysis. The process of journaling was done after eachinterview and at various points during methodologicaldecision-making. As Lincoln and Guba (1985) state, journaling48is a way for the investigator to record information about self- “data about the human instrument” (p. 327) - and the methodof research inquiry — “information about methodologicaldecisions made and the reasons for making them” (p. 327).Persistent observation, as outlined by Lincoln and Guba(1985), is another way in which credibility is increased.This involves “identify[ing] those characteristics andelements in the situation that are most relevant to theproblem or issue being pursued and focusing... on them indetail” (p. 304). While prolonged engagement provides “scope”to qualitative inquiry, persistent observation provides“depth” (Lincoln & Guba, 1985). “Premature closure” (p. 305)is one danger of prolonged engagement resulting in theresearcher drawing conclusions too early. Therefore,interviewing parents several times provided the opportunityfor an in—depth exploration of their experiences, and anopportunity for the researcher to challenge preliminaryconcepts and themes which emerged early in the process of datacollection.The second interview, in particular, allowed theresearcher to clarify information, check assumptions, andexpand on details presented during the first interview. Aswell, the second interview provided parents with anopportunity to discuss additional information that they maynot have remembered to share during the first interview. Withthe exception of one mother who participated in this study,49all parents disclosed stories about their child as well asfeelings and experiences as his/her parent that reiteratedthemes they had presented during the first interview, thussuggesting that no new information was emerging and prematureclosure was not occurring. During her second interview, thisone mother, however, did add some new information about herexperience that had not been discussed during the firstinterview. The second interview allowed for an in—depthdiscussion about her experience to the point that theresearcher felt no new information was emerging.When attempting to increase the probability that theresearch findings are credible, “member checks,” as discussedby Lincoln and Guba (1985) and Sandelowski (1986), can beemployed. This involves testing the “data, analyticcategories, interpretations, and conclusions” (Lincoln andGuba, 1985, p. 314) with the members of the group from whichthe original data was collected. Lincoln and Guba (1985)state:If the investigator is to be able to purport that hisor her reconstructions are recognizable to audiencemembers as adequate representations of their own (andmultiple) realities, it is essential that they begiven the opportunity to react to them (p. 314).At the end of the second interview, once parents had anopportunity to clarify and expand on information previouslyprovided, the researcher presented to three parents anexplanation of the preliminary conceptual framework derivedfrom the analyzed data. All three participants felt the50conceptual framework (as presented in Chapter Four)represented their experience as a parent to a child with adisability. One mother repeatedly confirmed heridentification with the themes and concepts presented bystating “yes” to each of the interpretations offered. Onefather commented that not only did it represent hisexperience, but he felt it would also describe the experienceof others he knew. As well, the third participant felt italso described her experience and stated she could not addanything else to it.According to Sandelowski (1986), results are consideredcredible when:• . . it presents such faithful descriptions orinterpretations of a human experience that the peoplehaving the experience would immediately recognizefrom those descriptions or interpretations as theirown (p. 30).As previously mentioned, the measurement tool was pretested in order to increase credibility of the interviewguide. As well, audiotaping was used to increase the accuracyof data collected, and the interviews were conducted only bythe researcher.The process of “peer debriefing” (Lincoln & Guba, 1985) bythe researcher was also undertaken and involved “exposingoneself to a disinterested peer. . . for the purpose of exploringaspects of the inquiry that might otherwise remain onlyimplicit within the inquirer’s mind” (p. 308). Variousaspects of this study were presented to several different51“experienced protagonist[s]” (p. 308) as a means of makingexplicit methodological decisions and researcher’s biases, andas a means of clarifying interpretations and findings. Peerdebriefing was done with a social worker who has extensiveexperience working with parents of children with disabilities,and with two additional social workers experienced inqualitative/ phenomenological inquiry. As well, sincephenomenological research is emergent, peer debriefing offeredthe researcher the opportunity for catharsis, “therebyclearing the mind of emotions and feelings that may beclouding good judgment or preventing emergence of sensiblenext steps” (p. 308).ApplicabilityIn qualitative research, generalizability of findings isdiscussed in terms of “applicability” - the degree to whichthe findings can be transferred from one context to another.“Representativeness” — a related concept often referring tothe method of sampling in quantitative studies - typically“refers to the data rather than to the subjects or settings”(Sandelowski, 1986, p. 32). According to Lincoln and Guba(1985), the responsibility of the qualitative researcher liesin her ability to provide a “thick description” of the contextand time in which the findings were found in order for thereader to make a judgement as to the transferability ofconclusions from one context to another. Sandelowski (1896)states that the applicability of findings can be evaluated by52the criterion of “fittingness” - i.e., the ability of thefindings to “fit” another context, to represent the experienceof the participants with integrity, and to be recognizable toits audience.a study meets the criterion of fittingness whenfindings can “fit” into contexts outside the studysituation and when its audience views its findings asmeaningful and applicable in terms of their ownexperience. In addition, the findings of the study,whether in the form of description, explanation, ortheory, “fit” the data from which they are derived.The findings are grounded in the life experiencesstudied and reflect their typical and atypicalcomments (p.32).Applicability of findings was increased by theresearcher’s careful attention to representation of the data.Both typical and atypical experiences were noted and themesderived from data obtained were supported by verbatim quotesfrom transcripts.Dependability and ConfirmabilityDependability and confirmability refer to the reliabilityof the research findings and are established in qualitativeresearch through a clear audit or “decision trail”(Sandelowski, 1986) outlining the steps of the study frombeginning to end. This study provided such a decision trailwhereby the research theory and methods were clearly outlined.In addition, the use of an audio recorder to collect data,verbatim transcription of the interviews for data analysis,and careful delineation of methodological decisions andreflective notes provided the records for the audit trail,53which address the criterion of confirmability anddependability of the research findings.SummaryThe purpose of this phenomenological study was to discoverand describe the totality of aging parents’ experiences caringfor their child with a disability in order to elicit themeaning of a lifetime of caring and facilitate a wholisticunderstanding of what that experience has been for parents.Through Giorgi’s phenomenological method of data analysis, ascited in Omery (1983), as well as careful attention to thecriterion of truthworthiness of the research methodology —e.g., credibility, applicability, dependability andconfirmability - the findings of this study reflect theexperience of five aging parents raising a son/daughter with adiability as it was ‘lived and perceived’ by the participants(Sandelowski, 1986). The findings of this study will bepresented in Chapter Four.54CHAPTER 4Presentation and Discussion of the FindingsIntroductionThe goal of this study was to describe aging parents’experience raising a son/daughter with a disability. Theparents who participated in this study were Caucasian frommiddle—class, professional backgrounds. As such, both thesmall sample size and parents’ homogenous background haveplaced restrictions on the generalizability of this study.Nonetheless, parents’ vivid accounts of their experiences of alifetime of caring for their child with a disability bothsupport previous research and provide important insights notpreviously identified by the literature.Although each parent’s experience was unique, severalcommon themes have emerged from participants’ interviews3.These themes have provided the conceptual framework from whichthe experience of aging parents has been discussed. Fromparents’ accounts of their experience caring for an adultData analysis occurred from the transcribed interviewswith parents. Some themes which emerged were not included in theconceptual framework, such as parents’ discussion of the effecttheir handicapped child had on his/her siblings. This theme wasnot included because it represented parents’ perceptions of theeffect on other children not the direct accounts from thesiblings. In addition, parents briefly talked about theirrelationship with their spouse, however, as a result of limitedtime, no in—depth inquiry was undertaken to better understand theeffects of raising a child with a disability on the maritalrelationship. Both themes would be important areas to explore infuture studies.55child with a disability, three phases were identified. Thesephases, however, represent a nonlinear process by whichparents appear to embark as they adjust to their child’sdisability and care for him/her over a lifetime. Each phasehas been identified as a “Phase of Adjustment” in order toconceptualize their experience as a process embodying ajourney of acceptance that has no absolute finality. Inaddition, there are no clear markers which represent thetransition from one phase to another. Parents’ descriptionsof their experience was conceptualized from an in—depthanalysis of tape—recorded interviews. These interviewsindicated that parents experienced a slow, gradual movementthrough various phases of adjustment that represents acontinuous adjustment to and acceptance of the child with adisability and the ways in which that disability affectsparents.Acceptance is a thread running through each phase ofparents’ experience; however, it should not be understood interms of the dictionary definition to mean parents’ ability“to receive with favour, willingness, or consent” (Funk &Wagnalls, 1976, p. 8) their child’s disability. Frequently,acceptance is used in the literature to mean a final stage ofcoming to terms with loss and grief, including that ofdisability. Featherstone (1980) points out, however, thatacceptance is much more complex and never final. As theparents in this study recounted their experience, acceptance56emerged as an important theme and appeared to portray the in—depth meaning they gave their son/daughter’s disability aswell as the meaning that disability has for themselves andtheir life over time. Parents described times of acceptingtheir child’s handicap, coming to terms with their role asparents to a disabled child, and spoke profoundly about thevalue that this experience has had in their lives.The term adjustment was chosen as a way of conceptualizingthe process of coping with the stress of caring for a childwith a disability. Benner and Wrubel (1989) define stress as“the experience of the disruption of meanings, understandings,and smooth functioning” (p. 62). The term coping was not usedto describe the ways in which parents dealt with “thedisruption” because coping often denotes a mechanisticperspective whereby people are seen as purely rationalindividuals standing external to events and consciouslydeveloping strategies to manage stress. Benner and Wrubel(1989) state:...co-ping strategies are seldom developed in a purelydeliberative and conscious manner. People may havevery little access to or understanding of the copingpractises. The practises they evolved to managesystems may have become their way of being in theworld and understanding of themselves (p. 23-24).Adjustment, on the other hand, denotes a shift, modificationor transformation in the way parents constitute and areconstituted by (Benner & Wrubel, 1989) the experience ofraising a son/daughter with a disability.In the “First Phase of Adjustment” parents began to57realize their child had a disability. Parents recountedstrong emotions and described enormous caregiving demands.This period encompassed the initial encounter withprofessionals and the search for a diagnosis and/or anunderstanding of their child’s disability.The “Second Phase of Adjustment” represented the“Parents’ Mission” to develop their child’s abilities andskills to the fullest. “Parents’ Mission” included theirongoing efforts to find appropriate formal supports andprograms, as well as their struggle to manage the day—to—daycare of their child.The “Third Phase of Adjustment” characterized parents’plans for the future care of their child with a disability.While parents were pleased with their son/daughter’s presentliving situation, a sense of uncertainty as to his/her futureprevailed. As parents’ faced the realities of thisuncertainty, they begin a process of planning for the futurecare of their adult son/daughter. This process included atime of ‘preparing to let go’ where concrete plans weredeveloped in order to provide a continuation of parents’values and goals regarding the quality of their adult child’slife and the ongoing monitoring of his/her care once theparents die. This phase also included parents’ reflections onthe choices they have made and involved contemplating themeaning of their lives as it has been lived. This account oftheir experience has been conceptualized as the “Existential58Meaning of the Experience” and provides a vivid description asto the meaning parents have given their lifetime of caring.In this chapter, parents’ experience is describedaccording to these three Phases of Adjustment. Within eachphase several common themes have emerged and together haveprovided the framework that was used to represent theexperiences of aging parents caring for a son/daughter with adisability. The quotes used were taken from the datacollected through interviews with parents and pseudonyms wereused to ensure confidentiality of the participants.First Phase of Adiustment:Initial Realization of the DisabilityDuring the “First Phase of Adjustment” parents eitherlearned about their child’s disability or began to suspecthe/she had a problem. Parents recounted strong emotions suchas blame, guilt, loss and shock. Several mothers indicated asense of self—blame while the fathers’ experiences werecharacterized by “shock”. Both mothers and one of the fatherslonged for answers regarding the diagnosis of their child’sdisability in order to help direct their efforts towardstaking care of their child. One mother stated that “mostlyyou want a diagnosis so you know what to do.” Another motherrecounted that early on in her son’s life there came a timewhen she searched “the library and got every book I could.59I’m going to do what I can.” This phase will be discussedaccording to several key themes which emerged.The Parents’ Resionse“What have I done?” While parents became aware of theirchild’s disability at different times, many strong emotionswere expressed. Mothers recounted similar feelings as theylearned “something was wrong.” One mother, whose child wasborn mentally handicapped, recalled feelings of guilt and lossas she first learned of her child’s disability.Alice:41 think, oh yes. . .yea... Definitely guilt.“What have I done?” No question about that.Tremendous feeling of guilt about that. I really didfeel maybe that there was something that I had doneinitially. And there is a tremendous sense ofloss...Although this mother had a diagnosis, the information shereceived offered no hope or direction. Instead, the diagnosisof her child being a “Mongoloid” brought with it negative,inaccurate and dispiriting information; she recounts:Alice: When he was born I was told in one sentence,“he’s a Mongoloid and he won’t live the day out.”That was where it’s at. Of course you know, whenyou’re young and... I really thought, “I hope hedoesn’t live,” you know. I didn’t know anythingabout so called Mongoloids, and what I did knowAbbreviation Key:All names used are pseudonyms to ensure confidentiality ofparticipants:[] = Non—verbal of father or mother and omissions topreserve confidentiality() = Researcher60live. If that was the case, a Mongoloid, I hoped hewouldn’t live. But that was just a quick reaction.Then the doctors... Kevin (pseudonym) did have asevere heart condition and we were told that hewouldn’t live the year out. And eventually they saidthat he wouldn’t live until adulthood and now he’s 32years old you know [laughing]. So its absolutelyamazing, but as the cardiologist said they didn’tknow enough then...Another mother, whose child “seemed quite ordinary tobegin with” and later, at the age of two, began to realize“there was a problem,” described feeling alone as shediscovered her child had a disability.Anne: There is this terrible feeling though when youdiscover you have something like that you feel verymuch alone. The aloneness of it is quiteoverwhelming. . . It’s amazing how alone [emphasisadded] you can feel when there is a problem you don’treally understand.For this mother, the discovery of her child’s disability wasalso accompanied by worry and concern. As well, she felt she“had done something wrong” and somehow hoped that a discoveryof what she had done wrong would provide direction for how shecould help her daughter.Anne: I felt that I had done something wrong and Isaid, “well, if I hadn’t done something wrong how canI do something right to help her?”For another mother, however, her initial concern that herchild may have a disability occurred gradually over manymonths so “by the time we were told I already had a lot oftime thinking, “I think she does have [something wrong].” Forthis mother, the realization of her daughter’s disability“really wasn’t so much of a shock.”61Barb: . . .because she was three months premature, itwas the first hint. As I said she was Cesarean, shewas terribly spastic and.. . then when the eyeswandered, all the things that I told you. By thetime they actually got down to the nitty gritty..No, I was prepared for that...But no, it wasn’t theshock I think I sort of gradually got used toit. . . . and I never went through this what a lot ofmothers have told me that they did. Like crying andwhy me? I never thought that...I mean I can have ahandicapped child just like anybody else.While the initial realization of her daughter’s disability wasnot a shock to this mother, what was “hard to accept” was notknowing what the diagnosis of Cerebral Palsy really meant.Having a diagnosis that didn’t “tell you what you can expector what they [the child] will do” was the most difficult forthis mother during the initial stage of discovering herchild’s disability.Barb: And I realized that wow, Cerebral Palsy can gofrom here to here. . . They gave us a ball park and thatwas hard to accept. I mean it was something youwould like to know exactly then you can attend to itand so forth but not knowing anything - what toexpect in any way shape or form was hard. But once Istarted doing therapy [with her] each little areabecame.. .well I had then knowledge of. . . and it becameobvious that if we were going to sit up by ourselvesit was going to be with difficulty and I couldn’t seethat she would ever actually sit, get into thatposition on her own and with each physicaldevelopment it...with doing the therapy myself...Icould see what we weren’t going to do or the odds arewe weren’t going to do.A father’s account of his experience, however, stronglyemphasized that there should be no blame placed on anyone; hestated:Al: And the other thing is that there is no blameattached to the situation and society will always tryto find a blame and there is no blame attached.62There is no fault... don’t try to blame it on onething or another thing or another thing it ... peoplecan’t function wellInstead, this father recalled feeling “shock” and he focusedhis attention on finding ways to deal with the situation.Al: It was a shock. What do you do? And so we hadto devise ways of working and mostly it involvedsimply doing whatever we could to keep the situationas good for the other two girls and good for Sandraas we could.Another father commented that “It was pretty. . . stunning tome. I just wasn’t, you know, really prepared for it.”However, “the real shock was. . .the word Cerebral Palsy, whichI really didn’t know what they meant.” For this father, hisfeelings of fear and anxiety were the result of not knowingwhat the “implications” of his daughter’s diagnosis were, andlike many of the other parents, “read[ing] up on it” was animportant step in having “things fall into place.”Henry: And of course once the word Cerebral Palsycame up, well we went to the library and startedreading what Cerebral Palsy was and how it occurs andthen a lot of things fell into place. So, no therewould be no reasons to doubt anymore.The process of searching for a diagnosis by one mother andfather, led to an additional experience of pain asprofessionals suggested the responsibility for their child’sdisability lay within the marital relationship and possibilityresulting from some form of abuse.Anne: So we went to the speech and hearing clinic tohave her assessed. And of course, there was no easydiagnosis either. They sort of... when there’sdelayed speech they have to check everything besides,maybe the mother’s an alcoholic or maybe the fatherhas got... or is a drunk or maybe there’s something63in the relationship that this child is being severelyneglected. This is the process you have to gothrough which is very painful. You know, you areworried tremendously about your child and they dohave to eliminate these things. It is necessary.And I can see that now. But at the time I could havedone without that experience.Al: And I remember one thing particularly and thatwas... Anne took her to the hospital one day and thenwhen I came home there was this sort of feeling,“Have you been harming this kid, have you beenhitting her behind my back? [laughing] Or have youbeen speaking roughly to her.” Oh I don’t know whatbecause the doctor you know I guess they deal withpeople who abuse children and they wanted to beabsolutely sure there was no abuse.And so she asked me [laughing] you know, and uh, wereally sat down and we talked about it we said “Allright, we deal with complete honesty and there’s noway, its you and I against the world as far as that’sconcerned. We know that we were doing what we weredoing and what we were doing is open between us. Andthere’s no question of doing anything behind oneanother’ s back.When these doctors come at us and we’ll go at themhonestly but that was one of the big things thathappened and then... I guess the question of what youdo with it began to filter in.While these parents accepted that it was necessary forprofessionals to scrutinize their home life in order toeliminate all possible causes for their child’s disability,both parents emphasized how painful and difficult this processwas for them. These parents recalled this experience severaltimes during the interview. In addition to the process ofdiscovering and understanding their child’s disability, theextra care required by these children placed enormous demandson parents.64Excessive Caregiving DemandsParents described the excessive caregiving demands thatbegan early in their child’s life. One mother described herdaughter as being “legally blind [and having] a whole raft ofphysical problems.” Her daughter’s bouts of pneumoniaoccurring “four times every winter regular as clockwork,” aswell as her asthma, bronchitis and chronic spasticity, allcontributed to two years of sleepless nights, and a great dealof physical and emotional exhaustion.Barb: Over the early years of Mary’s life, it wastwenty four hour care... You are going like eighteenhours a day. . . the first two years she neverslept. . . never slept through the night. I canremember up to the first year that I stayed up untilaround one or two with her and she would go off tosleep then, and I don’t know when she woke up. Ithink it was five or five thirty but Henry had goneto bed. He was holding down a job so we had to copewith that. He had to earn money, but he got up atthe five thing and looked after her and got hisbreakfast and got ready, etc., and then woke meup...I mean every time this kid went to sleep she’dget spastic and wake up...In one instance, this mother recalled the devastatingexperience of thinking her daughter could very likely die.Barb: . . . she had pneumonia when she was two. Notthe first time but this time it was really bad and mypediatrition was really a neat guy. He would phoneme every day to get a report. . .he would phone and Iguess he gave me enough credibility to realize that Iwasn’t stupid and I could tell him and I knew thingswere worse than they normally are and I used tothe kid was on that chesterfield with the steamergoing ... God in heavens its no wonder the wallsdidn’t peel I had so much steam going and tenting herand that.Anyhow, she was really bad and we ended up... Iphoned him on a Saturday morning and said that she’snot good, I’m bringing her in. And he checked her in65and said that she’s not going to make it. ... And hesaid... she’s going to have to go in the hospital.He said, “I think she should go in,” and I said Idon’t want her to go in and he said, “where do youwant her to die, at home or in the hospital and ifshe dies at home are you going to feel guilty?” AndI said, “yes.” And he said, “well she’s got to goin.” So that... I mean that just absolutelydestroyed us...For another mother, taking care of her disabled childmeant tending to his “health problems that were so severe” —health problems which resulted in frequent trips to theemergency room and very little sleep.Alice: . . .the health problems that were so severe.We had an old car and I was so afraid that it wouldbreak down because I can’t tell how many times in thefirst two or three years that I had to take Kevin tothe emergency. He would spike a temperature to 103just like that where he could turn around and befine. You know you would be sponging him down andthen taking him...I was so busy... I had to work but I wasn’t workingthe first two or three years. No, I didn’t go backto work until he was five. I just couldn’t. So Iwasn’t working then but there seemed to be a lot ofstress. Two other kids and I was bound anddetermined I was going to spend a certain amount oftime with Karen every day because there was noquestion that Kevin took a tremendous, tremendousamount of time for two reasons. Mostly because ofhis health, not because of being Down Syndrome. ButI also worked with him a lot.For this mother, accommodating the severe health careneeds of her disabled child while also “working with him alot,” dealing with a difficult marriage, and trying to meetthe needs of other children, resulted in so much pressure thatshe had a “breakdown.” At this point this mother began theprocess of acceptance.66The Process of Acceptance BeginsDuring the first phase of adjustment, parents recounted atime when the process of acceptance began. Parents indicatedthat accepting their child’s disability “initially [took] along time”. For one mother, the stress and pressure of tryingto be “super mom” by caring for her son’s severe medicalproblems while also addressing the needs of her other childrenand facing the demands and challenges of an unhappy marriage,caused her to have a “breakdown” when her son was one yearold. It was at this time that she began to accept her ownlimitations as well as the reality of her son’s disability.Alice: ... we had his crib in the same room as ours.And that first year, every time he would turn over orbreath heavily I was up like a shot. It really was aterrible year. And I’m not surprised I had sort of abreakdown at the end. I had to come to grips withthe fact that you can only do so much, so much that ahuman being can do. Do your best and... I was tryingto be a super mom, super mom to all of them.For another mother, the lack of a clear diagnosis extendedher hope for a “breakthrough”. She longed for an answer as towhat was wrong with her child:Anne: They were putting rockets to the moon. Theyput a man on the moon but they still couldn’t tell mewhat was wrong with my child. I thought that moneywould be better invested in something else than justsending people to the moon. That was a very personalfeeling though.However, when she was able to find “something to do,” she toobegan the slow process of accepting her child’s disability.Anne: I guess the thing that I learned early on thatsort of meant the most.... at first its overwhelmingand very frightening. But the thing that you have tofind is something to do. You have to attack your67problem and it doesn’t really matter if you areattacking it the wrong way. If you have the feelingthat you attack - its victor and victim, I guess;but if you feel you’ve been a victim or, you know,you have to have a path... to something so that youfeel you are actually doing something about it andworking with it. And not just feel that you areunfortunate and you’ve been victimized.That was very critical because until I found some wayto go at the problem and work with it in some way itwas very hard and very frightening. That was theimportant thing I think. That you feel you are onsome kind of positive course. And I think even ifyou are making mistakes its better to be doingsomething about the problem than feeling helpless.The helpless feeling is very hard.For this mother, her initial feelings of being overwhelmed,frightened and helpless were eased by “attacking” her problem.Finding ways to handle her child’s disability, helped herbegin the process of acceptance.The first phase of adjustment appeared to encompass thefirst year or two after the child’s disability was discovered,while the second phase began when parents were able to movefrom their initial emotional response to a mode of action.Second Phase of Adiustment:Parents’ MissionBeing a parent of a child with a disability meant mothersand fathers continued to respond to enormous caregivingdemands and assume multiple roles in an effort to both managethe day—to—day challenges as well as search for ways to helptheir children develop their abilities and reach theirpotential. Whether parents were searching for appropriate68educational programs, trying to locate knowledgableprofessionals, making decisions about necessary medicalinterventions, or investigating possible assistive devices,the comment of one father reflects parents’ passion andcommitment during this phase: “...we felt we had to do thembecause there was hope there that we could accomplishsomething.” A mother stated that “we’ve got to give her everychance and if that will do it then, you know, she had to go[to the hospital].” This phase lasted throughout the yearsthat parents raised their children, which for parents of achild with a disability, often meant providing care well intothe child’s adult years.Extensive Caregiving Demands: Managing Day-To-DayThe extensive caretaking demands, which began at the timeparents realized their child had a disability, continuedthroughout this phase. One mother described the stress andpressure she felt over the years:Alice: One of the major concerns I have had over theyears is his medical condition. He’s got earproblems, skin condition and he now... At one time hehad a lot of pneumonia when he was a child. A smallchild until the age of five or six. He was in and outof hospital all the time. And that was a tremendousamount of pressure. One time he just, they didn’tknow if he was going to make it...A father described his life as having to “carry out a verycareful routine everyday and. . . that routine was unvaried fromday to day, week to week”. He also commented that if thatroutine was changed it was often a “catastrophe.” Theroutines and health care needs of their disabled children,69required a great deal of time and offered little ‘time out’ asthis parent so aptly described:Al: I had to come home from [work] regularly at 4:00and even if I had to work later on when Sandra wentto sleep and that kind of thing. . .that’s the way itwas. [laughing] (Sounds like a lot of work.) Itwas. It began then... we didn’t really do anythingbut bring her up. We never got out much. Wecouldn’t seem to leave Sandra home with anybody. I’msure she wouldn’t have understood that so... we justbrought them up. And I guess that lasted for, Idon’t know, for years [laughing]...a long time.During her daughter’s adolescence, another motherdiscussed her attempts to help her daughter spend time withfriends and recounted how “tiring” it was to care for theirphysical needs.Barb: I had some of her friends come and they spentthe weekend. God, that was tiring. Believe you me,you start trying to bathroom three kids, twoteenagers and they’re big by that point and dressthem and sometimes feed and sometimes they would feedthemselves. But anyhow, they would come and spendthe weekend because that seemed a good idea for Naryto have these friends.Parents spent most of their time and energy raising theirchildren and struggling day-to-day to meet the needs of theirdisabled child while also tending to the needs of their otherchildren. This was also accompanied by a concerted effort tofind appropriate professional and formal programs that helpedthem develop their child’s abilities. Such efforts leftlittle time for anything else and isolation characterizedparents’ life during this time.70The Mission: Parents’ Search for HelpParents’ search for help was an attempt to find ways ofdeveloping their disabled child’s potential to its fullest.This became their mission or primary ambition as they raisedtheir child with a disability while also tending to the needsof their other children. One father stated that he and hiswife were “by ourselves a lot. We ran our own lives and didour own thing. It was simply a matter of keeping things goingand doing them.” For this father, his aim was “keeping allthis together” as well as “seeing” his daughter’s skills and“bring[ing] them out”.One mother indicated how important it was for her to“build her [child’s] self-confidence. And important for me tofeel that I was doing something positive.” Another mothertalked about her goal for her child in this way:Alice: If anybody’s reached their potential, thenKevin has done it, as far as I’m concerned. Butthat’s been my aim for Kevin. To help him be thatway.This mother recounted numerous stories highlighting her son’s“independence” of which she was proud.During this phase mothers and fathers recounted theirexperience in ways that highlighted their primary job:parenthood. In addition, for most parents, there was anindication that they felt they had succeeded in their careersas parents, since their children had developed skillsnecessary to live their lives as independently as possible.For those parents who felt success in their role as parent,71such feelings represented an even greater sense ofaccomplishment in light of the limited and/or lack of formalsupport. Several parents, however, had felt that their childhad not become independent and “self—reliant”. For theseparents, the struggle to accept what they had or had not beenable to accomplish as parents to their daughter continued; onemother expressed a persistent and prevailing sense of grief asa result of her daughter not living a “full life.”Formal supports: “No choices”. The context in whichparents raised their child was one where little formalsupports existed to either temporarily relieve parents oftheir caregiving demands or provide appropriate programs toassist in their child’s development. Whether it was“ignorance” by professionals regarding “the community as towhat facilities were available” or inequities in the systemthat meant “physically normal” children had services thatchildren with disabilities did not have, parents struggled toraise their disabled son/daughter with few, if any, choices.One father stated that unlike “today” when “education of everychild is a right. We had to beg for Mary and. . .1 didn’t seeit as any different than the other kids. They needed some [ofthe same] things...” He goes on to describe his “sad[ness],annoy[ance] and frustra[tion]” in this way:Henry: . . .1 guess at that point we were reading upmore on things too but. . . you know, they didn’t havesufficient services for these kids and they neededthem and they weren’t there and that’s frustrating...You can build a football field or a stadium for kidsthat can play football and these kids need to play72something too and yet there was nothing for them andright down the gambit. As they got older they neededelectric typewriters and things like that. . . theequipment when we’d have school days with other kidsat the high school and Mary was like back in theeighteenth century. You know, it still doesn’t makesense.For this father as he reflected on these years, “a certainamount of guilt feeling. .. [that] you should be able to domore” made it very difficult for him to feel good about hisability to care for his daughter.This same father also described the lack of physicaltherapy available to his daughter. His comment revealed boththe limited formalized supports available for children withdisabilities as well as parents’ hope that such formalservices would assist their child in developing his/hergreatest potential.Henry: . . .when she [his daughter] first startedtherapy she, you know, I think they had one therapistfor over a hundred kids. . . in those days it was kindof just more or less giving lip service to theproblem. And I don’t truthfully think she would bewalking if she had more therapy. . . but, you know,there are other kids that had speech problems andthey didn’t have a speech therapist or things likethat. Well, its.... you. . . it wasn’t acceptable...One mother commented on the lack of both professional andinformal advice to help parents know “what to be on thelookout for” as well as a lack of “homemaker service” to giveparents some much needed, practical respite:Barb: There was also no homemaking service. Therewas nobody doing that for us. There was nobodycoming in for two or three hours that can just doyour housework or that you can go to your neighbourand have coffee because Mary would have wanted to gotoo and I’d have known that...You did it yourself...73Another mother described her family’s need for respitesupport and what it meant to her when a little help finallybecame available.Anne: One of the things that happens when you have adifficult child is you don’t get away from the child.Finding a babysitter can be very difficult so one ofthe things, a good thing, that came out this way thatI was able to go get my haircut which was somethingthat was kind of hard to do unless my husbandbabysat.And we couldn’t find a babysitter so we stayed homeyou know, for a long time until finally they... thatwas at the General Hospital too and they told usabout these friendly aunts who would come and babysitthese difficult kids and we did end up finding thiswoman who was very good.But the kids used to, I can remember the oldest girl,you know, saying we never went anywhere. Other kids’parents had parties and went out to things and it wasvery difficult for us to do these things.And I think they felt that our family was a littlebit weird because we couldn’t take part in all thesocial games that other people did. (How did youfeel about that?) Well, there wasn’t ... we did whatwe could...She continued by saying that when a respite program wasavailable, it allowed her and her husband to take their otherchildren on a vacation. Her statement revealed how“horrendous” some of the family holidays had been when tryingto meet the needs of her disabled daughter while also caringfor the other family members. Respite allowed this mother toprovide a special time for her other children uninterrupted bythe demands of her disabled child.Anne: . . . they had a [name of respite program] whichwas a hostel, a respite hostel so after she [thehandicapped child] had been to school for a year wetook the kids. . .to Europe, the two older girls... we74had some horrendous holidays like the one I wastelling you about that were really very difficult andvery trying for the girls so that was great.For another mother, the financial need to continueworking, her lack of familial support and the limited or oftennonexistent formal supports such as respite and after schoolprograms, meant she felt she had no choice but to put herchild in a group home at the age of nine. She recounted theexperience with both regret and resolve.Alice: . . .initially, it was only for a month or so.That’s all we would agree to. That’s all I... it wassuggested to me by the Association social worker andshe was also a friend of mine. . . . they were stilllearning too because they didn’t have that many... itwas the only children’s group home they had. Andagain that’s when I first started learning about howto work with staff because I was involved an awfullot. Yea I found that extremely hard; extremelyhard. And yet as I look back I don’t... I don’t seethat there was an alternative.., its not like theyhad other after school programs. And they did startnot too long after that too... my husband wouldn’tallow someone to come into the home and... and therewere no after school programs at that time. So theonly way that I could tolerate that kind of situationwith him in a group home so young was that I wouldthink of him in terms of like the English do withtheir children that their children are in boardingschool very young but then he was home every weekend.In contrast with today’s climate of women working outsidethe home, one mother recalled having no other choice but to be“a stay—at—home-mom.” She too recounted the totality ofcaregiving and parenthood in this way:Anne: One of the things that’s sort of odd isworking. You know women are supposed to work thesedays and I still get people who sort of say well, you‘stay—at—home—moms’ [laughing]. There was nochoice, staying at home. How could you find somebodyto look after the situation?75With little choice of respite and childcare, and limitededucational opportunities for their children, parents assumedmany roles in the life of their child.Multiple Roles of ParentsIn parents’ search for appropriate programs to help theirchild develop his/her potential, parents adopted multipleroles. In addition to being a mom or dad, parents also becameteachers, physical therapists, monitors of their child’sphysical care and education, and became facilitators ofinformation to professionals who knew very little about theirchild’s needs.Parents’ role as teacher. In an effort to communicatewith her child, one mother searched for ways to teach herdaughter to read. Although her daughter was receiving speechtherapy, continuation of professional support was uncertainunless progress was seen: “you are allowed 18 months oftherapy and if that doesn’t help then they cut you off there.That was what they did at the time.”Anne: So, I taught grade 1, when I taught, so shegave me a few ideas to work with and I used a fewideas of my own. We had the name ‘piano’ on thepiano and the words on everything I could thinkof.... I used just about anything I could thinkof.... so she did learn to read. Her reading camealong quite nicely. Not what you’d expect with anordinary child, but still she can read quite well.Another mother spent an enormous amount of time teaching herson and the satisfaction she felt was obvious:76Alice: You know there were a lot of other DownSyndrome children that I knew that were able to domany more things than they [the other children] did,but Kevin, he would do them...Besides the enormous time parents dedicated to teachingtheir children, they also spent a great deal of energy doing“therapy, you know, like stretch[ing] cords and all thatkind... I did that at least five days out of seven” all withthe hope that their child might learn to be more physicallyindependent one day.Parents’ role as physical therapist. Looking back, onemother recounted that her extensive involvement in performingconsistent physical therapy for her daughter “didn’taccomplish anything” since she “still can’t walk. She stillcan’t wheel the manual wheelchair.” However, this mother’scommitment to providing her daughter with every possibleadvantage in the hope that one day she would walk becameevident as she recounted the following:Barb: . . .we were always short therapists and Marywould get it say once a month, well, I mean sheshould have had professional therapy at least once aweek but mostly it should have been three times aweek. Anyhow, I used to go to the school everyday,take her out of class for half an hour to do therapywith her, it was eleven thirty to twelve, feed herlunch because they needed feeders at that[school]...and then go home. I did that for a wholeyear and someone said to me, “well don’t you findthat really breaks up your day?” Well, of course itbreaks up your day. But I mean to me there wasn’t analternative. She had to have therapy.This mother demonstrated the enormous commitment anddedication of parents to the development of their child’s77potential. While parents demonstrated this commitment byperforming the role of physical therapist, they also adoptedthe role of monitoring the quality of the child’s care.Parent’s role as monitor. For one woman and her husband,caring for their handicapped daughter meant a constant searchfor appropriate school programs and teachers that ‘would workwith their child.’Anne: There wasn’t the schooling that there is nowand the choices. And there were years where wethought there would be nothing for her at all becausethey weren’t obliged to provide any kind of educationand yet we were very fortunate something really goodseemed to show up every year as we needed it...Parents considered various institutions in an effort tofind an appropriate place for their child to learn anddevelop. However, as they investigated the variouspossibilities, one mother commented on how “horrifying” thealternatives were.Alice: And when Kevin was quite young I went out to[name of institution] school to see what [the] schoolwas like and... at that time everyone was puttingtheir name on the list because there were five, sixhundred names on the waiting list. You justautomatically put your name on the list. And I wentout to see what it was like. And I’ll say I waspretty horrified to see what I saw...Anne: I can remember remarks being passed that Ididn’t appreciate. I think they assumed that Ishould have put her in an institution but that wasthe common thinking at the time and I remember whatAl’s niece said once, “Oh, we all admire you so muchfor keeping Sandra.” And I said, “Oh, I didn’t knowI had a choice.” And I guess there were places Icould have put her. But none of them were veryappealing.78Al: ... we have thought... for the sake of the othergirls that perhaps Sandra should be taken to aresidential setting earlier so that the girls wouldhave more chances to have their own social life athome, but every time we thought about that and thepossibilities of it and the possible outcomes of it,it wasn’t worth it. We went to [name of Americancity] one year to see a situation down there... thatwas supposed to be really great [laughing]. . . .thenthe whole thought of leaving her in that foreignplace and coming back here... it just wouldn’t work.We couldn’t do it. So we just didn’t have any wayof, any other way of dealing with the situation. Iguess there was a residential situation in [name ofcity in B.C.], but there again.., all it does istake people out of situations that were horrible andput them into something that was slightly lesshorrible, probably. But Sandra was in a goodsituation here. There was no reason what so ever tomove her.Another mother commented that for her, she could neverconsider putting her daughter in an institution. This motherfelt strongly that her daughter “would never be challenged,stimulated and she would have died of pneumonia because that’sthe only thing that...got [her] over pneumonia.. .because she’dat least had lung expansion” as a result of this motherproviding her daughter with the appropriate exercises. It wasthese exercises “that kept her alive.”Barb: I couldn’t have done it to her. She had twostrikes against her. I just could not in any wayshape or form put her in [name of institution]. I’dhave died. I would.One mother remarked that “things are always happening andthey always will.” Therefore, her role as monitor meantfinding ways to work with the staff in his group home to besure her son was well cared for.Alice: ...it’s not easy to do a good monitoring jobif you don’t live in the home. You have to pick on79every cue. You have to always be reminding. Youhave to do it in a positive way so that you get theright kind of action and there is always new staff.And I always sort of groan, “One more newstaff to train.” [laughing] And that’s about whereits at you know and I keep trying to get across tothem...Parents’ role as monitor was an aspect of caregiving thatremained constant throughout this phase of adjustmentextending well into the child’s adult years. As will bediscussed during the third phase of adjustment, this role ascaregiver never ended.Speaking about the segregated school program that wasavailable for her mentally handicapped son, one motherrecounted: “I don’t know what it was, but he didn’t seem tofit into the school that well. In some ways they [theteachers] were, in my opinion, quite punitive like.” Parentsfrequently talked about the “fit” of programs and theimportance of teachers, professionals and programs that “lookat your [emphasis added] child”.Anne: When they tried to fit her into differentprograms and find the help we want them to look atyour [emphasis added] child. You don’t want her tobe looked at as part of a category. So staying awayfrom labels was very worthwhile. Autism... I foundautism a very frightening term. And of course Sandrawasn’t all that frightening. But it seemed like athreat at the time...Assuming the role of monitor meant parents had toskilfully negotiate the domain of professionals in order tosecure the services their child needed. At times therestrictions inherent in the arena of formalized programs andsupports worked to some parents’ advantage. The label used to80identify the child’s disability often served as a gatekeeperto various programs, as one mother’s statement revealed.Anne: .. .mostly you want a diagnosis so you knowwhat to do. Not because you need a label andeventually you begin to realize that a label is avery dangerous thing. And... if she’d been autisticlots of people said, “well we can’t do anything forautistic children”.., so therefore to my advantagethat she wasn’t autistic. We went to a meeting lastweek and this fellow said, “ well if your child isautistic you can get a special aid, you get this,that and the other thing.” So its worth your whilethese days to say I have an autistic child becauseyou will get lots of help, but that wasn’t the casewhen Sandra was young.However, as was illustrated by a mother who felt she had nochoice but to put her son in a group home at the age of nine,the realities of inadequate and restrictive formal supportshave proved to be a great disadvantage for many parents. Forthis reason, many older parents were pioneers in thedevelopment of programs and services that young families arepresently able to access. With no programs available for herson, one mother had no alternative but to develop her own.Alice: I went to the Association and said, “What isthere for three or four year olds. And they said ifyou want one start one yourself and I did. They gaveme a list of names and I will never forget it becauseI had to phone these parents and some of them, theirson or daughter had died, some of them were in[institution in B.C.]. Well I wasn’t adjusted tohaving a son like Kevin myself let alone dealing withsomething like that.The role of monitor was a consistent theme for parents andone that reflected their caregiving responsibilities in thepast and the present, and eventually would become asignificant aspect in parents’ future planning for their adult81child with a disability.. In addition, parents’ role asfacilitator of information to professionals constitutedanother role performed by parents during this second phase ofadjustment.Parent’s role as facilitator of information toprofessionals. Parents frequently were involved withprofessionals who knew very little about their child’sdisability, what his/her needs were or where appropriateprograms could be found to help their child. This meantmothers and fathers assumed a great deal of the responsibilityto both find information and educate professionals..Anne: I was in invited. .. . by [name of doctor] to theMental Health Centre, and he just come in so he gavea speech. He talked about the things that there werefor delayed development and mentioned the Speech andHearing Clinic at the General Hospital and so I wentto the doctor and told him I wanted her to go. Andof course I had to provide the details and tell himhow to go about it. Because I needed a doctor’sreferral. And that’s the way it was mostly all theway along because the doctors don’t. They look atphysical conditions and ... these other things are awhole different field.One mother recounted how important it was for her to have an“umbilical cord so that you have access to whatever help thereis” and a father talked about the value of having a contact inthe school system “behind the scenes” who “knew what washappening.”Anne: To know in fact that I did go places that theonly help that I got with this particular place,actually it was the Mental Health Centre, was if theydid make some breakthrough and learned somethingabout the problem I’d been in a position to hear andI guess I sort of tried to put myself, all the waythrough her upbringing and even now, somewhere where82you can get... be aware of what’s happening in thefield or in the medical...Al: Anyway, the school board was very, verysupportive there keeping her in that class and Iguess some of it had to do with I used to go over tothe school board office and bug the director ofspecial services every once in a while to try andfind out from him what he thought we could do. Thatwas the only person in [name of city], and he did agood job. He was behind the scenes. He knew whatwas happening and kind of assured me that he knewwhat was happening, and he helped an awful 1t.The role of facilitator added additional pressure forparents since they were often unable to rely on professionalsto offer them complete or accurate information on servicesavailable for their child. For these parents the statement byone mother aptly described their role as facilitator: “Youhave to educate him [the doctor] as you go.”The Process of Acceptance ContinuesThe second phase of adjustment also included thecontinuation of parents’ process of acceptance. As parentscontinued to modify their life around the needs of theirson/daughter with a disability, they demonstrated a wholisticperspective to their child and his/her place in the family.In addition, parents found it helpful when professionalsalso adopted this wholistic perspective. This perspectivesignified an integrative outlook parents had toward theirchild and represented a view of him/her as an individual withboth strengths and limitations contributing to the family inunique ways. Parents recounted experiences where the childwith a disability was normalized or included in family83functions, routines and celebrations, and where professionalsalso discussed the child’s needs and behaviours in ways thatnormalized the experience for parents.Several aspects of this wholistic perspective have beenpresented as an important theme to emerge from parents’experience. In addition, this perspective has also beenconceptualized as a transition for parents from the day—to—daystruggles of raising a child with a disability to that ofgreater acceptance of the child with a disability.Parent’s wholistic perspective: a bridge to acceptance.In numerous ways, parents recounted experiences thatdemonstrated how their disabled son/daughter was integratedinto the family. One mother described the time when herdaughter was admitted to the hospital and the “experts”suggested the family not visit for several weeks in order forthe daughter “to get adjusted.” A social worker alsosuggested the rest of the family take this opportunity forrespite by going on “a holiday.” For this mother, whobelieved strongly that “if ever kids need parents its whenthey are in the hospital,” there was no way she could imagineany member of her family enjoying a vacation without herdaughter, Mary.Barb: . . . different ones at [name of hospital] wouldsay, “wouldn’t you be smart to go away now — to havea holiday?” Holiday? Are you out of your mind? Howcould we go away? How could you have a holiday, oneof your kids are missing? They never understoodthat. . . Our kids couldn’t have done it, never mind ifwe could have, the kids couldn’t have left her, youknow.84In spite of the caregiving demands placed on parents as aresult of their son/daughter’s disability, parents describedmany incidences where “we did all the same things that everyfamily does” and the child’s needs were integrated into thenormal routines and celebrations of the family.Alice: But we did all the same things that everyfamily does. We did a lot of camping. He lovedcamping. I think people are surprised today when Igo to take them camping because Kevin knows what todo because that’s what we did. We couldn’t afford todo anything else. We did a fair bit of camping, weloved it. Again we always had to watch Kevin becausewe thought we were going to lose him. He was justgoing to go if we weren’t careful. He is justinterested in everything.I think his birthdays were very important and...I think one year it was his sister’s birthday and sowe... Kevin was to carry birthday cake. I’ll neverforget this. He started to carry it and the cakefell over on the floor like that so we just picked itup, took it back into the kitchen, wiped the floor,wiped the pan, put the candles back in, back out hewent again [laughing]. It is funny the littlethings you remember... He just wanted to do thosethings so well. I, why shouldn’t we let him...Al: We did a lot of travelling. We used to takeourselves and go... Anne’s brother lived at [name ofAmerican university], you know, down in [name ofAmerican city], so in spring break we would take upand go down there, driving the car. Well, whenyou’ve got two normal children, normally husky andhealthy and frisky and Sandra herself is normallyhusky... but Sandra doesn’t know what is happeningunless you write it down. We would say, O.K. Sandrathis is what we are going to do. We are going todrive, we are going to have breakfast at such andsuch a place. We are going to drive and have coffeeat such and such a place and drive and have lunch atsuch and such a place and drive and go to a motel...at such and such a place.85Parents also described times when professionals reframedtheir child’s behaviour in ways that normalized the child andplaced his/her behaviour in a context that helped parentsunderstand and accept the behaviour more easily. One mother,when her child would be “crying and howling” in public, feltthe behaviour to be “quite humiliating,” and initiallyinterpreted this situation to be a reflection of her abilityto parent. However, when a professional normalized herdaughter’s behaviour in light of the very real physicallimitations of her disability, this mother began to see herdaughter’s acting out in ways other than her own success orfailure as a parent. As she pointed out, “its good to getthat from a professional that did help.”Anne: One of the things I guess the psychiatristsaid that was helpful was, she would throw tempertantrums so, or get upset and this is quitehumiliating in public to have this child crying andhowling and you feel quite guilty about it. He saidwell, in her case this is not a temper tantrum. Thisis a catastrophic reaction because you know when shewas upset she was really upset, and beside herselfand beyond herself even. So that was very helpful tosort of have this idea that this was not just atemper tantrum. ... You were supposed to punish thekid for temper tantrums, and it didn’t seem right todo it either because she was obviously upset. Andshe didn’t do it for with her eye coldly on gainbecause things were overwhelming for her so its goodto get that from a professional and that did help.For another mother, putting her son’s “criminal” anticsinto the context of normal behaviour for young boys, helpedher “feel better” and not assume his behaviour reflected herability to be a good parent.Alice: He threw rocks at motorcycles.., up on [name86of street] at a Motorcycle shop. He threw rocks andthe police were after him about that. He took alunchbucket and put it threw somebody’s basementwindow. [laughing] The executive director of [name of“Association”], I was president at this time(mumble) .. . “You know, the only difference betweenKevin and I when I was a boy was Kevin wasn’t smartenough not to get caught.” [laughing] So that made mefeel better. So I guess some boys do those sorts ofthings.One mother recounted how much it meant to her when her“very kind.. . and very understanding” pediatrician wassensitive to the financial effect her daughter’s repeatedillness had on the family.Barb: ...he knew financially we were just getting byalways and she was always on an antibiotic and hewould say, “I really hate to give this to you itsquite an expensive one” and that and I’ve be thinkingbecause I’d be worried, like it doesn’t matter. Ifshe has to have it like. If he’d pulled out tendollars and given it to me it wouldn’t have surprisedme...This same doctor also demonstrated an understanding of theemotional impact caring for a severely ill child had on allmembers of the family.Barb: If you can possibly come in from two until the endof visiting hours it would be the best thing for her. Andof course he knew we had three other kids. And he knewwhat he was asking. This was not going to be easy.As well, this same mother commented on the importance ofprofessionals who demonstrated a wholistic perspective by“never talk[ing] down to” the child with a disability, thusrespecting the child’s inherent worth and dignity as anindividual.Barb: . . . he turned out to accept her and he thoughtshe was great. He talked to her and over the yearsand they had a great relationship and he never, ever87talked down to her.. .He [the G.P.] never talked downto her. He asked her how she felt when she was sickand how do you feel, where does it hurt, and on andon and on. We were lucky in our, those two doctorswere our pediatrician and our G.P.The value to parents when professionals held a belief inthe intrinsic worth of their disabled child can be seen inthis father’s poignant statement regarding a comment made by adoctor when advising a local treatment centre on their use offunds.Henry: It was a couple of years the Animal Shelterin [name of city] was getting more money than thetreatment centre for our kids and one other thing,the [name of umbrella funding agency] at the time hada doctor advise them on medical aspects and onemeeting he said, “well, there’s no sense putting toomuch money to your kids because they’re not going todo anything anyway.”Parents also expressed a wholistic perspective of theirchild through their realistic appraisal of his/her abilities.As a result, acceptance meant their child’s limitations werebalanced by his/her achievements and strengths.Alice: . . .he’s so quick and so good in some areas,you know, way, way behind in others. And I stillfind that hard to deal with.Al: ...its hard to say what we have learned withSandra you have someone like Sandra. . . you learn totake things as they are and work from there andthat’s important and that’s the way we see everythingnow and I think another thing we’ve learned too isthat there aren’t any easy solutions.Barb: I guess what it amounted to was we’ve got agirl who’s really quite mentally alert here. We’vegot something going for us now. We can work on thisbecause physically we were really going downhill, notgoing anywhere ....she couldn’t sit up, and shecouldn’t roll over and she couldn’t do any of those.88She was lying in her crib. But she was fine to me.She looked fine to me. I didn’t have a problem.It was also important to parents that the professionalswho were involved in their child’s life would “want to haveher” and programs would consider their child as an individual.The following statement was recounted by one mother on severaloccasions and indicated the importance for parents thatprofessionals saw their child as an individual:Anne: One thing I really feel about is that anyteacher she had to want to have her. . . . she always gotwith a teacher who was sort of interested in whatSandra could do. And they’re the people that reallyhelped your child.The support we got was really good, in fact I kindof feel that years we brought her up better than now.We’ve had all this deinstitutionalization but at thetime they were closing institutions they were lookingat the child as an individual and trying to fit herinto something that would fit ‘her’. Whereas now,and I don’t know if this is true, but everybody seemsto go through the same process and I wonder if theyare looking at the individual child as closely now asthey were willing to do then. You know, when theyfelt that they had to do things better. And youdon’t just automatically put your child into aninstitution but they were looking at what you shoulddo for the child in the community.The wholistic perspective added a dimension to parents’day-to-day challenges of caring for a child with a disabilitythat enabled them to continue their journey of acceptance.Acceptance ContinuesAs parents recalled their experiences raising a child witha disability, they began to express the continued process ofacceptance: the slow process of accepting their child’sdisability and their accomplishments as parents. One mother89stated that after many years of physical therapy, surgeriesand rehabilitation, she began to realize and accept the extentof her daughter’s limitations.Barb: . . . in any event, by nine we knew she wasn’twalking, she wasn’t going to feed herself, she wasn’tgoing to dress herself or bath herself or bathroom ordo any of those things because you need arms to dothose things and that was sort of a gradualrealization that these things weren’t going tohappen.Another mother talked about the slow process of coming toterms with the finality of her daughter’s disability.Anne: So we were sort of working for a breakthrough,but as the years went on you slowly, slowly come tothat there isn’t going to be a breakthrough, thatthis is a lifelong thing.This same mother hoped for a “magic cure” and part of herjourney toward acceptance meant letting go of that hope.Anne: And, of course, this is the thing. You arehoping you are making some basic mistake.... You arewanting the magic cure. And finally you have torealize that the magic cure just isn’t there.As this mother continued to recall her experience, shedemonstrated further acceptance of herself as a parent to herdisabled child - an acceptance that allowed her to feel proudof both her daughter and her abilities as a parent:Anne: (When you look back at being a parent allthese years, what things do you feel the most proudof... you did well?) Teaching her to read was...finding this way around the problem. That wasimportant to me... and sort of getting around doingthings. I think we’ve come away from the experienceof raising Sandra feeling good about...Well, we are proud of her and she livescomfortably with herself. She has her shortcomingsbut we feel she’s shown great courage and90determination and we’re proud of her now. And we dofeel that she can make her way through the rest ofher life when we’re gone with enough skills and goodfeelings about herself to live through to the end ofher life. And she’ll live a long life because she’sa very healthy girl. Basically I think we are proudof her.One father remarked on the uniqueness of all his children.His comment reflected an acceptance of both his daughter witha disability and his efforts to be a good parent:Al: .. .you can’t blame yourself for a person beingthe way they are because that’s what they are. Youdon’t get them... When you have children, youdon’t... you can put in an order for the child butyou can’t say what kind or how they’re going to be.My oldest daughter and my middle daughter are quitedifferent. Sandra is different again. They will allbe different. You do the best you can...Through the many stories that revealed the demands anddifficulties parents faced raising their child with adisability, these parents also recounted the many ways theirlives had been enriched. The existential meanings parentsgave their experience as a mom or dad to a child with adisability has been conceptualized in the third phase ofadjustment where parents began to face their own mortality andmake concrete plans to provide for the future care of theiradult child once they as parents die.Third Phase of Adiustment:Future Planning - “Who Cares for my Child when I Die?”During this phase of adjustment, parents began to thinkabout the future care needs of their child in light of theirown aging and mortality. While most parents felt pleased with91their son/daughter’s present living arrangements, they allacknowledged “some trepidation” about the security of theirchild’s future in light of “staff changes” and an uncertain“government climate.” The third phase of adjustment markedthe point at which parents became ready to face theuncertainty of their child’s future and began planning for atime when their child must “survive after we do.” This phasealso encompassed parents’ reflections of a lifetime ofcaregiving and the existential meanings they have given to thepresence of their disabled child in their lives.Facing Their Adult Child’s Uncertain FutureFor these parents, facing their adult child’s uncertainfuture began when they acknowledged their own growinglimitations in being able to provide the physical care theirdisabled son/daughter needed. This time of transitionappeared to occur when parents consciously recognized theirown mortality and began to realize the need for someone tocarry on their role as caregiver once they were no longer ableto do so.Facing one’s mortality. For one mother, whose child hadbeen in a group home since the age of nine, the time ofacknowledging the uncertainty of his future came when shebegan to realize that her son would, in fact, outlive her andpreparations for his continued care had to be made in light ofher own mortality.Alice: There is some trepidation. I always... I’vehad to start thinking differently in the last few92years because in my mind for many years there was noquestion that I would outlive Kevin because that iswhat we had been told. Now that’s just not the case.For one father, the realization that he and his wife wouldnot be around to take care of their daughter with a disabilitythroughout her life “was probably always in the background.”However, “it was around that point our own physicallimitations started - we were getting signs of them.. . it wouldbe. . . certainly a transition at that point” when the need toface his daughter’s uncertain future “became much moretangible.”Henry: I thought we would be around to do it [takecare of their handicapped daughter], and then all ofa sudden the realization comes, “well, you’re notgoing to be around forever.” So.. .1 guess at anotherpoint when she was quite young that life expectancyof all the kids like Mary wasn’t very great at thatpoint. Until. .certainly in the very early year, Irather thought we would probably outlive Mary,anyway. And times have changed in that respect,also.As parents considered their son/daughter’s future in lightof limited and/or changing community services, programs, andgovernment funding, they recognized that their child’s futurewas “scary.” As one father stated, while his daughter’s lifeappeared fine at the present time, “who knows what the futureholds. . . certainly things are a lot better than they were butits still.. .you’d be foolish not to have misgivings.” Onemother’s statement illustrated the gradual transition ofparents in realizing their own growing physical limitations93and the need to prepare for the ongoing care of their adultchild.Barb: .. .we’re getting too old physically to lookafter her and that’s scary. And even to come homefor Christmas’s and holidays there is that time whenwe’re not going to be able to do it and I don’t knowhow you tell one of your children you’ll have to staythere [in the group home] for Christmas.. .the futureconcerns me. I think it concerns me that I will notbe physically capable of taking her on holidays...As parents considered their child’s future — acceptingthat “some day we were going to die” — they began the processof finding a way to continue their role as monitor of theson/daughter’s care.Continuing the role as monitor. This process ofacknowledging their child’s future security was slow andincremental. For one father, his readiness to face hisdaughter’s uncertain future began with the stage of herleaving home — the time when “you break away from your parentsand you become.. .you establish your life independentlysomewhere else.” As one mother recounted, while the need torestrict the length of time her daughter spends with her andher husband “is an awful thing,” it is also necessary in orderto prepare her daughter for a time when they will no longer beavailable to their child.Barb: . . .there will be a time when (a) either wedie, or (b) we physically cannot do it. So this isthe time to make the adjustments and while we’restill here to make it easier, to iron the kinks out,to see that things are done that should be done, ithas to be done that way. I mean, you can’t lovesomebody and make their life more miserable at afuture time. I mean that’s a rotten kind of love, Ithink.94One parent recounted her need to find someone to continuethe monitoring role she had performed for years.Alice: I feel you know quite confident in theassociation. In the group home he’s in particularly.Its a real good one. Excellent staff. And the staffchanges so you have to... as long as I have somebodywho is going to be monitoring well it should be O.K.There is some trepidation. I always... I’ve had tostart thinking differently in the last few yearsbecause in my mind for many years there was noquestion that I would outlive Kevin because that iswhat we had been told. Now that’s just not the case.Another mother expressed her fear that the quality of life herdaughter presently enjoyed could be threatened by changinggovernment commitments.Anne: Our only fear is, what if that breaks down orthe government climate these days is getting meaner,meaner and stingier I think. So whether they’llprovide the quality that they are providing now forour daughter always is the question. So we’re stillinterested in. . . trying to get some kind of thinggoing for a network or a line of support for her incase there is a breakdown in the future. Theservices she can get.One father echoed similar concerns when he recounted his fearthat the quality of his daughter’s life “depends on governmentfunding.”Henry: I could see Mary in a group home parked infront of the T.V. set all day. She’s not assertiveherself except when she’s at home here, so I’d befearful about that. You know a lot of her life itdepends on government funding, and if that was cut,well her care would suffer for it. You know, who’sto say ten or twenty years down the road what willoccur?Another father spoke clearly about aging parents’ ongoingresponsibilities to help their adult child “find a place” inlife in order to survive after his/her parent dies.95Al: And we were interested in what kind of things wecan do for children with handicaps who have growninto adults and who have to find a place and who haveto survive after we do.As parents faced the uncertainty of their child’s future,they began the process of ‘letting go’ whereby concrete planswere beginning to be made in order to ensure someone took overtheir caregiving role to their adult child. This caregivingrole was extended through the job of monitor and by overseeingthe continuation of parents’ values and goals in decisionsthat were made on behalf of the adult child once parents died.Preparing to ‘Let Go’: Developing a Social NetworkParents discussed the importance of developing a socialnetwork around their child as a way of ensuring the quality ofcare was maintained for their son/daughter once parents wereno longer able to perform their role as monitor. Socialnetworks were facilitated through an agency, which providedparents with a formalized way to bring family and/or friendstogether to arrange future planning for the care of the adultchild with a disability when parents are unable to continuetheir caregiving roles. This agency provided a way in whichparents could arrange for someone “to take over the monitoringrole” and “specify the kinds of things we think will be bestfor [our child]. And the ways in which we think it can becontinued.” One mother felt very strongly about the value ofsocial network planning as a way of preparing for the futureof her son and a means by which she could feel more confidentletting go of her lifetime role as caregiver.96Alice: I think Kevin’s future will be alright. Imean that’s one of the involvements of [name ofagency]. We’ve been involved with [name of agency]almost since it started... I think it will be fine...my sister will probably take over the monitoring rolethat I do. The others don’t have the time to dothat. The others, my son and daughter and theirfamilies, they’ll do a lot of the other things that Ido. ... as long as I have somebody who is going tobe monitoring well it should be O.K. . . . Certainlythere’s a concern for the future and I think thelonger I am in [name of agency] I look at thingsdifferently and see the way things should be...things should be prepared... I guess one of thethings I would say to parents of any age, youngparents as well, be prepared for the future. Try...parents should build networks around their son ordaughter even when they are young. They become moreself—sustaining and... its much harder to do it whenthey are older, much, much harder. I wish we’d beenable to have this opportunity when Kevin was young.You can do it much more readily...For another mother, developing a social network meant that“at least [they] would check the kind of house she lives in tosee that she is cared for properly.” After this motherrecounted the many ways in which she continues to oversee theongoing care of her daughter — e.g., “checking to make surethings [dentist/doctor appointments] were done” — she stated:“I guess I want them to be a mother and father, mostly.”However, for one father “the jury’s out with me with [name ofagency involved in arranging social network planning].” Thisfather remains skeptical about the agency’s ability to providethe appropriate level of monitoring to ensure his daughter’sfuture will be well taken care of.Henry: Certainly the concept is good but itsbasically a new organization as I see it and allorganizations often have troubled time and they canbecome ends to themselves — become administrativelyheavy — and so certainly we wouldn’t have subscribed97to it if we didn’t have hopes for it. But,realistically one would have to give an open mind toit. (So again you can’t totally relax that they’llbe able to carry out your wishes?) No, I would saythat’s quite right.While finding someone to carry on her task as monitor wasvery significant for parents in preparing for their child’sfuture, it was also important for them that they have some wayof ensuring their values and goals, which directed theircaregiving throughout their child’s life, be continued afterthey die. Parents recounted numerous examples of the valuesthey held and the goals they had for their child’s future.One mother described the value she held that children withdisabilities “should be living a full life.” She attempted tocarry out this value while assuming the job of evaluatinggroup homes prior to her daughter moving into an semi—independent living situation later in her life. She and herhusband also tried to ensure that programs and services theyutilized during their daughter’s life would “provide lots ofexperiences for her” — a value which was also important asthese parents attempted to plan for her future care.Anne: We... I was on the residential committee forthe [name of the organization] . . . as a whole wastrying to get some kind of monitoring for the grouphomes and for a while a was a monitor with that home.And my husband did as well. He would go and visitonce a month and make a report. But it wasn’tsatisfactory. And I tried at one point to sort ofget them to focus on the child’s life.., its anadults obviously, but we’ll call them a child, agrown up child. But when you just go through andlook at the physical plant of the place or even ifyou try to pick up on the emotional ambience you arestill missing the point because the individual child,or the client, should be living a full life.98(So when you got involved then with [name of agency)it was really to help make sure that Sandra had afull life and a complete life.) Yes. As much aspossible. Because that’s what we’ve tried toprovide. And there are a lot of programs that theycan go to that we always saw that she got to and wewant that to continue. And the house has been verygood about doing this and providing lots ofexperiences for her. Ya, we have been veryfortunate.This mother’s statement demonstrated her past search formeaningful programs and experiences for her daughter and theimportance that her daughter be given experiences that providea full and meaningful life in the present and the future.For another father, living a full life meant “ensuringthat she has a social life and that day-to-day care issuitable.”Henry: . . .you know what I’d like for her is to havea happy social type of life that... and I guessthere’s hope that it’ll come about but there’s noassurance that it will. I guess there’s a mixture ofhope and misgiving, really. Certainly its notsomething really money can cure. Its more havinginfrastructure that will bring it about...The idea is to get people like Mary out in thecommunity and she’s doing.. .horseback riding andworks their office for half a day a week, getsrunning various things like that. Goes sailing inthe summer.. .that requires the right people to ensurethings like that happen and, you know, will superviseher. And, Mary’s workers are just excellent at itand I think that’s largely why she is coming out ofherself a lot now. Without people like that who canreally do it, it would be a pretty barren social likefor her, I think.This father made the distinction between doing a job andcaring about the people you are working with.Henry: You can fill the position but people can gothrough the motions or they can really do it. . .1guess [you can] write up a report that people are99having a really great social life and where they arejust being carted to somewhere, or you can ensurethey are really participating and doing what theywant to do.One father described the importance to him that hisdaughter live in a situation where “she fits in”. This fathersaw his daughter presently living in a situation that was the“kind of thing we would always like to see her in” — asituation where many of their values had been extended to herpresent situation.Al: So, she began to want to move into a group home,move into an apartment or something like that. Wedidn’t want her to move into a place where she wouldbe totally dependent. We didn’t want this thingcalled independence because we don’t believe thatanybody is independent and Sandra... and ahandicapped person ... independence means lonelybecause there is nobody there with you, nobody to bewith and nobody to help you along and nobody to makeyour life worth living as far as that goes.So it came up eventually came up that establishingsemi—independent living situation and we got Sandrainto it and she feels... she fits in just like this.It worked fine for her. ... Sandra lives there inthat situation and enjoys it. We’d like to have herkeep on doing it. As far as having a supportnetwork, the place where she is living in has turnedout to be as good as anything we could have hopedfor. As far as the paid staff are concerned, verysupportive, very ingenious in finding ways to helpher. Take her on vacation with them and that kind ofthing.I think because we’ve got Sandra along to be part ofthe group, or go with us and do activities withpeople - and she is easy to get along with - whenyou understand her limitations she’s fine. And thegirls over there just think she’s great company. Sothey take her along on holidays.This father’s statement also demonstrated how he and his wifehad integrated their daughter into their present family100functions and revealed how their value of integration hadtransferred into her present living situation for which theyare very pleased. The importance to this father that such asituation continue in the future was also evident:Al: But of course they [the present staff of thegroup home] won’t be there forever. The situationwill change. And I guess we need [the agency] tospecify the kinds of things we think will be best forSandra. And the ways in which we think it can becontinued and then set up some kind of network tomake sure that kind of thing does happen for Sandraduring her life.For one mother, the primary value she held was that herdaughter not be seen as a “second class citizen” — that “she’snot something to be stared at and pitied”, that “whateverliving arrangement she may be in ... [she’s not] put[ting] upwith less than anybody else should.”Barb: Our kids are [seen] as second class citizensand I guess that still bugs me. They have no rights.Everything they get is priviledge. That I’d havechanged - all the way down the line.While this mother “gave her the best growing up life she couldhave had. She had fun. She enjoyed, she laughed. She was apart of [the family],” the values of integration and living afull life have not as yet been realized. In spite of herdaughter moving into a group home and attaining a certainamount of independence, this mother did not feel it had “beena good home.. .it’s been a disaster of a home.” As such, shefelt her daughter’s life remained “empty” and the values thismother held were not being adequately carried on during thistransition time of ‘letting go.’ As a result, this mother101remains “emotionally drained” as she worries about the qualityof her daughter’s life, and letting go of her role as monitorof her daughter’s care becomes increasingly more difficult.Barb: I would like to see her have a life. I wouldlike to see her happy. I would like to see that forall our children - they’re no different - and theonly thing is I think that if the others are unhappyfor whatever reasons, say it may be a divorce orwhatever, I have confidence that they will manage andthen see a future, whereas I’m not sure she will. . . ifshe will ever.I’m just sorry that her life is so empty for her. Iwould be sorry if the other’s lives were empty.There again, its up to them, though. And I somehowstill feel responsible for her. The others its yourlife, you change it. I’ll be there if you need me.But for her I still feel responsible or thatresponsibility is there. I can’t say, “no, you’re anadult now.” I can’t do that, yet.For some parents, they had found living situations fortheir son/daughter that they believed provided the qualitycare they hoped for their child and they have found ways toextend their caregiving role after they have died. Theseparents were “fairly optimistic” about the their adultson/daughter’s future. One mother’s discussion illustratedhow she had to consciously prepare to let go of her role asparent to a child with a disability at a time when mostparents no longer worried about the day—to—day caregivingneeds of their children. However, this conscious ‘letting go’of the caregiving role assisted these aging parents to feeloptimistic about their child’s future.Alice: Yes, so I’m fairly optimistic. You know somethings won’t, probably won’t... Its amazing the sort102of things you have to monitor about him. You knowlike my son—in—law says, “Kevin’s dress pants are tooshort. Tell them to lengthen them.” I don’t reallycare. That’s not what’s important. It may beimportant to Don but its not important to me. It’snot important for me to make an issue about that.I’ll make an issue about clothes if they areinappropriate for the whether. Like I’ve had madeissues before, you know he’s got to wear lighterclothes. They can’t see him crossing those darkstreets. Those kind of things about clothes or ifthe clothes are dirty or something like that. Idon’t really care if they are an inch short. Whocares? That’s not... certainly I would prefer it, butthat is not what I’ll make an issue about. But thereis many, many things that I think my sister wouldmake an issue about something I feel is not importantenough. Those are detailed things. But then she’llhave to adjust. The staff will have to adjust, andKevin will have to adjust; that’s all there is toit...As parents faced their mortality and prepared to let go oftheir role as caregiver, they also recounted numerous waysthey had come to accept themselves as parents of a disabledchild, their life as it had been and the meaning they gave tohaving had a child with a disability. The following sectionsdiscuss this aspect of parents’ experience.Acceptance of One’s Self and One’s Self as a ParentParents recounted many stories which demonstrated theirpride in their child’s accomplishments and pride in themselvesfor their success in developing his/her skills and fosteringindependence, courage and strength in their adult child with adisability.Al: I think Sandra is as capable . . . Sandra iscapable but we’ve developed her strengths as strongas we can and we’ve helped her to overcome hershortcomings as well as we can and that feels good.This same father saw his job of raising his child with a103disability as a “challenge” and a challenge he felt proudhaving successfully met.Al: I feel good that there has been a big challengeand we’ve managed it and that we’ve demonstrated thisto our... not just to ourselves but demonstrated itvery strongly that we’re strong [laughing].. We’restrong ... we had a challenge which... and manypeople faced with similar challenges have gonewalked away from it or done a very poor job of it andwe’ve done a good job of it. ... It feels good thatwe actually... when I talked to people who had...when I talked to people who had handicapped children,and so on, I don’t feel that I’ve done an awful lotbetter than most of them but I do feel that I’ve doneas good as ... as well as we could with the personwe’ve had. And because Sandra in a sense has a lotmore talent than most other people with similar kindsof handicaps. For people with severe mentaldisabilities who can’t really read or wouldn’t beable to learn to read . . .who doesn’t have thephysical coordination.., their expectations are notso high... we feel that Sandra has come up to ourexpectations.Another father, however, expressed strong feelings ofinadequacy and regret that he had not been able to do more forhis daughter with a disability. For him, accepting himself asa parent meant “sort of forgetting instead of letting go.”This father felt he could have been “more helpful orsupportive” to his wife as the “bulk of Mary’s upbringing fellon [her].” He also wished he “could have probably made herlife easier with being able to provide more devices and thingsof that sort of a mechanical nature” as well as having beenmore of an advocate for services that his disabled daughterneeded over the years. However, this father also wished hehad been more responsive to the needs of his other children.Henry: Well, to tell the truth I always felt that I104probably could have done better so...I...can’t saythat I feel really great about anything [as aparent]. You could say, well, gee we kept her athome and so and so didn’t. But, everyone’s problemsare different...so (long pause) I’m afraid I can’tgive you a good answer on that one. I’d say the samewith my other children though. I wouldn’t make anexception.For one father, however, reviewing his life in light ofhaving cared for his daughter with a diability also meant hereflected on this experience as it impacted on his career.Al: I don’t know whether I would have done anythingdifferently in my career and that’s partly because ofthe kind of person I am. I don’t know if I couldhave really pushed my career in a differentdirections than I did and I did very well. Theremight have been more time to do more things in mycareer but I don’t... I would have probably spent itdoing other things than doing with the family. But Idid learn and I think we both come to the idea thatthis has been... although our life has been differentfrom what we predicted it would be, maybe we don’thave quite as much money as we could have had. Maybewe don’t live in a bigger house than we have now.Haven’t gone out to do all those things. We’re justas well ahead as anybody else.For mothers, parenthood their career and their senseof fulfilment and accomplishment as women came when theyrealized they had succeeded in raising children who haddeveloped to their greatest potential. This mother spokeabout her success as a parent as she recounted her confidencethat her adult child could successfully negotiate “her waythrough. . .her life” after this parent dies.Anne: And we do feel that she can make her waythrough the rest of her life when we’re gone withenough skills and good feelings about herself to livethrough to the end of her life.Parent’s also vividly recounted the way their child’s105disability had contributed to their sense of personalachievement and development. For one father, hisaccomplishments as a parent were as personally rewarding ashaving made “a lot of money.”Al: It feels just as good as making a lot of moneyor whatever else a person would want to do.In addition to accepting their successes as parents, theseparents also recounted acceptance of their life as it hadbeen.Acceptance of One’s Life as it Has BeenAs parents recounted their experience of caring for achild with a disability over a lifetime, they reflected on thechoices they had made over the years, and their life as it hadunfolded. Parents demonstrated an acceptance of the questionsthey “don’t know the answers to” which helped them come toterms with difficult decisions made in the past. One mother,who regretted her decision to place her son in a group home ata very young age, was able to resolve some of her feelings byaccepting the pressures and constraints of her life at thetime.Alice: And when you say what would you do that wasdifferent... if I could possibly have kept him home Iwould have done so. But looking at it, that mighthave been more detrimental to him. I don’t know. Idon’t know the answers to that. I would like tohave. If our marriage would have been different thatwould have probably been an option. I feltpressures. I felt that I was doing it all alone.And I thought that was extremely hard. I did putpressures on myself that I shouldn’t have but it allworked out.Parents also discussed the importance of accepting “one’s106mistakes” along the way and learning from them, as thesemothers point out.Alice: What would I do differently? I don’t knowhow one can answer that you know I... I think thebest thing is one learns from one’s mistakes and youdo it differently as you go along. You do. Youthink, “Oh, I shouldn’t have done that. That reallydidn’t help Kevin. What’s the best way to help him.”And I’m still always doing that, trying to look atalternative ways to help him.Anne: (Are there any things you would have donedifferently?) I don’t think so. Even the mistakesyou make are sort of unavoidable because you don’tknow a thing is a mistake until you try it. And thenit doesn’t work out for you... Yea, no I don’tthink, I don’t think there was very much we couldhave done other than what we did.For another mother, the struggle to accept her mistakeshad been won; however, she continued to grapple with whetheror not she had been successful as a parent.Barb: I don’t have guilt feelings. I mean I havefeelings that I have made mistakes but I don’t feelguilty. I did the best I could and I accept thatthere was nobody that could...there was nobody givingme advice that, through those years anyhow, there wasno advice, nobody. . . .you just played it blind. Youdid the best you could with the sort of common senseand knowledge I had of your own, and if you made amistake, well, I did the best I could, that’s all Ican say.For this mother, she had raised her daughter according to thevalues she held: she “treated her like she was one of thefamily and part of the family” and believed it was her job tomake all her children “self—reliant, independent, responsibleadults;” for her handicapped daughter, she consciously thoughtshe “had to give her whatever we could to (not compensate) butto make her life as full as possible.”107Barb: I treated her like I would of the others.. .1always went on the theory is, if Mary weren’thandicapped would I take her? And, if the answer wasyes, she went, and if it was not, then you stayedhome and then I’d have a good reason to. But shewent wherever anyone else went so, maybe we shouldhave done it differently.Yet, as this mother recounted numerous stories whichillustrated the values by which she raised her daughter, shealso demonstrated her struggle to accept her limitations as aparent; she could not make her daughter happy: she could notgive her daughter the full life she so dearly wanted her tohave.Barb: I often feel that I maybe set her up forfailures so to speak that, you know, that the way wemade her just part of everything that she thoughtthat was going to be the way life was. But itwasn’t. I don’t know what I’d have donedifferently or how I would have done differently orhow I could have prepared her better.This mother recalled feelings of grief, which she hadbecome aware of “somewhere along Mary’s early twenty’s [when]I realized that I had been grieving all along”. For her,grief will not end until her daughter is “happy and living afull life in [my daughter’s] opinion.”Barb: I guess maybe they [her children] haveattained the things I wanted for them. Independence,self-reliance; whatever field they wanted to go into, they appeared to have done that. Whereas Maryhas done none of that. And I don’t mean done none ofthat because she can’t feed herself — that’s not whatits about. She’s not independent. She isn’t selfreliant. She’s not happy and hasn’t been happy for alot of years. So I think that’s...if I could see herhappy and living a full life in her opinion, notmine, hers, I think the grieving would stop. But Idon’t see that ever happening so I guess the grievinggoes on...108In spite of her grief, this mother also recounted the positiveways in which her disabled child had impacted her life.Barb: I’m delighted that I had her. I’m not sureshe’s delighted she was born. You know, if I were inher position I might not either...she’s been alearning process. She’s broadened us all. Maybe wewere very insensitive to other people. I’vecertainly learned things... (How do you think she’schanged your life for the better?) She’s broadenedit. She’s opened my eyes.Another factor which arose was how the presence of theirdisabled son/daughter contributed to parents’ sense ofpersonal development. One mother stated that because of“having a son like Kevin” she had “met so many wonderfulpeople... just tremendous people” and had grown through theexperience of raising a child with a disability.Alice: (As Kevin’s mom is there anything particularthat you feel proud of or feel good about that youhave done as a parent?) Oh yes, I do and its notjust for Kevin but in starting the preschool. Ithink that was important and I guess I’ve been... itsamazing... as I told you I didn’t even know how tochair a meeting. I didn’t know how to do any ofthose things. I think that I’ve helped not only tohelp Kevin but a lot of other people. I have parentsphoning me all the time and... parents I have knownfor years and years and years and I’ve met some veryfine people... [long pause]While parents discussed the many ways their adultson/daughter had contributed to their development asindividuals and the numerous ways they felt proud of theiraccomplishments as parents, the mothers and one father alsorecounted an overall satisfaction having lived with and caredfor a child with a disability. The last theme to be presentedin this third phase of adjustment explores the existential109meaning parents give their life raising a child with adisability.From the Everyday Experience of Caregiving to an ExistentialMeaningParents’ reflections of their lifetime of caring broughtthem to a depth of acceptance that balanced the realities oftheir everyday struggles and demands with an existentialmeaning of their lifetime of caring. This existential meaningrefers to the way parents were able to acknowledge the pain,sadness and loss of their experience while also recognizinghow they had been changed, compensated and created by it. Asone noted author described, “the disability is now woven intotheir past; it is bound up with what they have lived throughand what they are. They could not remove the painful threadwithout ripping out the whole fabric of their existence”(Featherstone, 1989, p. 230).One father’s statement revealed both the tension and themeaning of the challenge he experienced raising hishandicapped daughter:Al: And who knows, whether there’s regrets aboutwhether there would be other satisfactions that wouldhave been greater in our lives, how do you know? Imean its what our life has been. And it has beenvery satisfying, overall.Frustrating. Well, I tell you, there have been timeswhen it would have been easy ... I thought manytimes, “Wouldn’t it be easy,” ... you couldn’t carryon any more, didn’t know where to go next and what todo. ... It is satisfying and deep down inside we feelwell what we did ... (mumble) it was good ... (mumble)as other people who have done the same as theydid, we deal with the task at hand. I look at my110brother—in—law who is a nuclear physicist and mybrother who is an anthropologist and, you know, wejust didn’t get into those things, but what we didget into we did just as well as they did. It took asmuch of us as their work did for them.For one mother, the process of grappling with theexistential meaning of her experience raising a daughter witha disability meant an ongoing struggle to balance the manyways her daughter has enriched her life with the cost to herdaughter of having to live with a disability. For thismother, the joy she experienced having raised her daughtercannot easily outweigh the price her daughter may have paid.Barb: . . . If I had my drothers to go back when Marywas born I think it would be the kind thing if shehadn’t survived for her but not for me. I can handleme. I can’t handle her. Her hurts. I don’t thinkall handicapped people have her hurts but from whereshe comes from she doesn’t have enough of a life.Its not good enough and she knows it. That’s what Ihave trouble with.I don’t know if I did Mary a favour by strugglingthrough all the pneumonia and keeping her alive. Idon’t know if she would thank me for that now. Ireally don’t. And that’s what I feel about. . . I’m notsorry I had her. I’m just not sure she would feelthat way.For another mother, this statement spoke to parents’process of acceptance — a process that encapsulates the painand the joy:Anne: There’s a story I should tell you that... Ithink I can tell without crying [laughs). I met awoman who had a child once and she told a story aboutherself that... She would never wish the experienceof having a handicapped child on somebody else.111But she wouldn’t part with the experience either. And,ya, I think that’s it. I was very impressed when she saidthat. I thought that really was the way I really feelabout Sandra.While parents embarked on a process of acceptance thatbegan when they discovered their child had a disability andprogressed to a point where they acknowledged they had beenchanged by the experience - and often changed for the better -this process was not linear nor was it final. Certain aspectsof acceptance appeared to assist parents in feeling pride inthemselves as individuals and parents, and this pride allowedthem to progress through their own developmental stage ofaging with a confidence in what they had contributed in theirlives. For many, this acceptance also provided parents with aconfidence in their adult child’s future, and contributed totheir ability to face the realities of their son/daughter’suncertain future. By considering their adult child’s futurecare, parents prepared to let go of their lifetime ofcaregivng by making concrete plans for their son/daughter inpreparation for the time when they no longer will be able tocarry out their caregiving responsibilities. In this way, theparents in this study began to answer the question: “Whathappens to my child when I die?”112SummaryThe experience of aging parents caring for their adultson/daughter with a disability has been described in terms ofthree phases of adjustment: 1) Initial Realization of theDisability, 2) Parents’ Mission, and 3) Future Planning: “Whocares for my child when I die?” These phases provided aconceptual framework for understanding aging parents’ lifetimeof caring, and represent a nonlinear process which parentsembarked on as they adjusted to, and cared for, their childwith a disability. Parents’ vivid accounts of theirexperience highlighted common themes which characterized eachphase of adjustment. Acceptance was a thread running througheach phase and was used to conceptualize parents’ journeytoward a deeper understanding and the meaning that theirson/daughter’s disability has had in their lives.In reflecting on their experiences, many of which werepainful and demanding, parents recounted a process ofacceptance which is signified by four prominentcharacteristics. The process of acceptance first of allrepresented a resolution of some difficult choices in thepast. Second, it indicated a realization of their success asparents of a child with a disability. Third, parentsrecognized they had become better people for having cared fora child with a disability and they took pride in the personalachievements which resulted from such care. Fourth, it was113marked by an appreciation of the strengths and abilities oftheir son/daughter.Parents’ ability to feel “satisfaction” for their lives asparents to a child with a disability, as well as their abilityto plan for his/her future needs once they will no longer beable to continue their caregiving role, helped parents feeloptimistic about the future of their child and themselves. Afather described “the challenge” of caring for a child with adisability by stating, “...you know, considering the challengewe have had.. .it’s a source of great satisfaction.” However,for those parents who did not feel their adult child was“happy and living a full life,” their ability to feeloptimistic that their child’s future will one day change gets“smaller all the time.” And, for one mother, the impact onher is living with grief that has “no signs that it will everchange.”The research method of phenomenology used to elicitparents’ understanding of a lifetime of caring for a childwith a disability has allowed parents to recount both thepositive and the negative aspects of their experience. Byexamining parents’ experience in its totality, this study hasdemonstrated that the “whole” was indeed “quite different fromthe sum of its parts” (Omery, 1983, p. 60). A review of theliterature revealed that most studies conducted on theexperiences of aging parents anticipated primarily negative114impacts on parents caring for a child with a disability.Previous research indicates contradictions and unexpectedresults regarding what parents find stressful as a caregiverto a handicapped child.This study, however, suggested that the presence of achild with a disability in the lives of these parents hadcontributed positively to parents’ sense of self, theirperceptions of themselves as parents, and the meanings andinterpretations they give their lives in spite of — or as aresult of - having cared for a disabled child. While it iscritical that parents’ struggles not be underestimated, northe pain and loss they described be minimized, these agingparents demonstrated an ability, upon reflection, to embracethe positive aspects of their experience and allow the morepainful features to recede. This is a testimony to theresilience and strength of parents, and may be a gift ofaging, which can provide hope to young families raising ason/daughter with a disability.Parents’ accounts of their experiences with professionalsalso suggested the value of social workers who listen toparents’ stories. With increasing case loads and decreasingresources, the dilemma for social workers is the lack of timeto listen and encourage parents’ life review. However, byhearing aging parents’ needs and concerns in the context of alifetime of struggles and demands, achievements andaccomplishments, social workers will be able to identify115parent’s values and goals. These values and goals provideimportant insight as to the skills and resourcefulness ofparents, and are a particularly significant aspect to planningfor their adult child’s future.The participants of this study recounted the importance tothem of extending their values and goals to the life of theiradult child once they are unable to actively continue theirrole as caregiver. Extending these values was a significantelement to ensuring a quality life for their child, and it wasthis quality of life which contributed to parents’ addressingtheir own developmental needs of aging: facing theirmortality; preparing to let go of their role as primarycaregiver to their adult child; and coming to terms with theirlife as it has been. The process of listening to parents’accounts of their lifetime of caring for a child with adisability may begin to assist these parents in realizing thefull extent of the impact having cared for their child has hadon them. Upon reflection, one father recalled his tearfulresponse when asked to describe his experience raising hisdisabled daughter. For this father, he “couldn’t believe thathere I was blubbering away last time and yet... it wasn’t anywarning that was going to happen. Even seconds before it didhappen. There must be something stored back there that I’mnot aware of. But it’s there I guess.”An additional point worth mentioning is that this studydemonstrated the value of social workers adopting a wholistic116perspective toward the person with a disability and thefamilies caring for him/her. Parents vividly recounted thevalue of an integrative, wholistic perspective to their beingable to gradually adjust and accommodate to the unique effectsthat having cared for a disabled child over a lifetime has hadon them. For those professionals who also embraced such aperspective, parents felt “they helped” in their process ofacceptance. The implications of these findings will bepresented in the final chapter.117CHAPTER 5Conclusions and ImplicationsConclusionsThis study was designed to discover and describe theexperience of aging parents caring for their adultson/daughter with a disability. With the continued movementtoward deinstitutionalization, and community-based healthcare, an increasing number of aging parents are caring fortheir adult son/daughter with a disability in the community.A literature review revealed that research on the experiencesof aging parents has primarily employed quantitative studiesthat have focused on a limited range of aging parents’ needsand concerns regarding their caretaking responsibilities to achild with a disability. In addition, this research hastypically assumed such experiences to be negative. This hasresulted in studies that have neglected the positivecontributions a child with a disability can make to parents’lives, and the positive perceptions parents may have of theirlifetime of caring. Such research may in fact be missing agreat deal as it presupposes a definition of what thatexperience has been for aging parents. An understanding ofthe totality of aging parents’ experiences will be beneficialin providing important insights into the needs of parents asthey face their own developmental process of aging.Understanding parents’ perceptions of a lifetime of caregiving118will be important to social workers in providing quality andtimely services to this growing population.In order to provide parents with an opportunity todescribe their experiences, the research method ofphenomenology was chosen to elicit parents’ understanding ofraising a child with a disability. As a result, the questionguiding this study has been: What are the experiences ofaging parents caring for their adult son/daughter with adisability?Data was collected through in-depth interviews with threemothers and two fathers of adult children with disabilities.Parents were interviewed in their homes and each parentparticipated in two interviews. The data collected wasanalyzed and common themes were identified. Theconceptualization of the experience was confirmed by threeparents during the second interview. The remaining twoparticipants were unavailable to comment on the conceptualframework.Parents’ experiences were conceptualized according tothree phases of adjustment, which represent a nonlinearprocess of acceptance and were characterized by key themeswithin each phase. These phases, key themes and implicationsfor social work are illustrated in Appendix G. From thesefindings, implications for social work are clear. A summaryof each phase of adjustment and its relevance to social work119practice, followed by implications for future research, willbe discussed in the remainder of this chapter.Summary of Findings and Implications for Social WorkThe first phase represented parents’ initial realizationof their child’s disability, and was characterized by strongemotions such as loss, grief and shock. Parents describedexcessive caregiving demands due to their child’s disabilityand severe health problems. As a result, parents experienceda great deal of stress and exhaustion accompanied by ongoingencounters with medical professionals. In addition, thisphase represented the beginning of parents’ acceptance oftheir child’s disability, and of a concerted effort to learnall they could about his/her handicap.Social workers need to provide parents with informationabout their child’s disability and direct parents to availableresources that will assist them in learning, understanding andadjusting to his/her disability and the caregiving demandswhich result. Social workers need to validate parent’sstress, exhaustion, fears and worries in order to provideemotional support and guidance to parents and families. Inaddition, social workers need to provide both peer andprofessional opportunities for parents to discuss theirfeelings and tell their stories in order to facilitate theircoping with the stress and isolation that often occurs as aresult of continuous caregiving.120The second phase of adjustment represented parents’mission: their efforts to secure services, programs andprofessional assistance to help their child develop to his/hergreatest potential. During this phase, parents assumedmultiple roles as they endeavoured to develop their child’sabilities and skills. Parents assumed the role of teacher,physical therapist, monitor and facilitator of information toprofessionals in an effort to respond to the enormous, ongoingcaregiving demands of their child, and to find ways to develophis/her potential. This phase was also identified by acontinuation of parents’ process of acceptance wherebyparents’ wholistic perspective toward their child’s disabilityprovided a bridge to their acceptance of themselves asparents.At this stage of parents’ lives, social workers can assistin many ways. Parents need information on services andprograms that will both develop their child’s skills andabilities as well as provide relief to them from the stressand pressure of ongoing caregiving. Programs for the childinclude choices in educational, recreational and socialopportunities, as well as technological expertise to assistthe child with a disability to become as independent aspossible in his/her activities of daily living.For parents, services and programs include flexible in—home and out—of—home respite in order to provide parents withtime to devote to other children as well as to get the much121needed rest and recreation for themselves. Furthermore,parents may benefit from financial assistance to help meet theoften high costs of caring for a child with a disability.Where programs and services do not exist, social workers canfacilitate their development and, where programs areavailable, they need to minimize, for parents, the frequentlyexisting bureaucratic obstacles in an effort to decrease thetime and effort it takes for parents to access resources.Once again, social workers need to validate and affirmparents’ diligence and commitment to the care of their childand his/her integration into the family. By listening to, andempathizing with, parents’ stories, social workers canfacilitate parents’ understanding and meaning of theirexperience. This, in turn, can promote an ongoing process ofparents’ acceptance of their child’s disability and the effecthe/she has on their life, thus giving parents an opportunityto feel less alone and isolated as well as to see both thepositive and negative aspects of their life as parents of achild with a disability. Additionally, social workers need toeducate other professionals regarding the importance ofadopting a wholistic perspective towards the disabled childand parents’ efforts to care for him/her. This involvesfocusing on the child’s strengths, abilities andcontributions, as well as acknowledging his/her needs,limitations and inabilities. In this way, professionalsaffirm parents’ efforts to integrate their child into the122family and community, and validate parents’ love for, andcommitment to, him/her.The third phase represented parents’ future planning anddepicted a process of preparing for their adult son/daughter’suncertain future when they will no longer be able to continuetheir caregiving role. This phase is characterized by parentspreparing to let go of their caregiving role throughdeveloping of social networks. This third phase illustratedthe process of accepting one’s life as it has been and movingfrom the everyday experience of caregiving to the existentialmeaning of that experience.During this phase of adjustment, social workers have anopportunity to provide important assistance to aging parents.Both peer and professional support is needed for parents inorder to provide opportunities to discuss their fears andconcerns about their own advancing years and what this meansto the ongoing care of their disabled child. It is vital thatsocial workers recognize and respect the diligence, commitmentand care with which these parents have cared for, andadvocated on behalf of, their child throughout his/her life.There must be a recognition of the difficulties aging parentsencounter as they face their child’s uncertain future andbegin to risk letting go of their lifetime role as caregiver.Martin (1981) writes, “parents have the right to cope with thereality of having a handicapped child in their own way and ontheir own time frame” (p. 99). Parents need the opportunity123to talk about their needs. Social workers need to take thetime to listen to these concerns, and to affirm parents fortheir work and achievements.Of particular significance to listening to parents’stories is giving parents an opportunity to express themeaning they have given the presence of their child’sdisability in their lives. This gives parents a chance torecount both the positive and negative aspects of theirexperience, to formulate personal meanings, and to expressimportant emotions. As Benner and Wrubel (1989) state, theseemotions “bring the past interpretation of the situation intothe present, where past history can be reinterpreted andreconstituted” (p. 97). One’s emotions and personal meaningsprovide direction to various coping options in the present,and help the professional see parents’ strengths,determination, resourcefulness and values, which provideinsight into how best to assist parents to come to terms withtheir life as a parent to a child with a disability. Then,parents can be given the support and direction they need tonegotiate their own transitions of aging. Time to hearparents’ needs and concerns in the context of a lifetime ofstruggles and demands, achievements and accomplishments willassist social workers in helping parents with future planningfor their son/daughter.Future planning was a significant aspect in addressingparent’s own developmental needs of aging — in particular,124coming to terms with one’s declining physical abilities;facing one’s mortality; accepting one’s self and one’s self asparent; and accepting one’s life as it has been. For theparent of a disabled child, addressing the issues of agingneeds to be done in the context of the ongoing caregivinggiven to a dependent adult child. A significant aspect forparents in facing their advancing years is the active planningand preparation for their child’s care when they are no longerable to fulfil the role of primary caregiver. This caninvolve, among other things, the formal development of socialnetworks whereby families and friends oversee various aspectsof the adult child’s care on behalf of the aging parent.Few services are available for adult children withdisabilities, and fewer still for the parents who care forthem. Social workers must be willing to challenge the systemon behalf of parents in order to develop community—basedservices for adults with disabilities that foster theirindependence and provide for their future care. By socialworkers understanding the developmental needs of agingparents, they are in a unique position of anticipating theneed for services before a crisis occurs. These serviceswould include respite and homemaker services for parents,various independent living options cnd employment!recreational opportunities for the adult child. By socialwork advocacy and provision of such services, aging parentswill have the resources and support to facilitate a positive125transition for their adult child’s independence and will thusbe able to more readily prepare for their own process ofaging.Social workers must recognize and be knowledgeable aboutthe importance of future planning to the developmental needsof aging parents who care for a child with a disability. Thisinvolves being aware of the community services and resourcesthat can guide parents in preparing for estate planning, willsand finding appropriate trustees who will make decisionsregarding their son/daughter’s care in ways that fosterparents’ values and goals. Appropriate training andeducation would be helpful in preparing social workers toassist parents in this area. Throughout these planning stages,social workers must sensitively deal with families’ ongoinglife process in light of caring for a disabled child.The overall experience of parents caring for a child witha disability indicates parent perceptions are largely positivewith the child with a disability positively contributing toparents’ lives. While parents speak of the loss, stress andpressure of raising a child with a disability, they alsorecounted positive stories of their child and describednumerous ways in which they have gained from the experience ofraising a son/daughter with a diability.The strength of phenomenology as both a research methodand a philosophy informing and guiding practice is that itallows parents to express both the benefits as well as the126limitations of their experience. Featherstone (1980) states“good listeners discover strengths as well as weakness” (p.214). This study has demonstrated that when aging parentshave been given the opportunity to reflect on theirexperiences raising a child with a disability, they have tolda very positive story regarding the meaning and impact thislifetime of caring has had.A phenomenological view proposes that “our present livescontain the content of past experience in such a way as toopen to us certain possibilities in the future” (Benner &Wrubel, 1989, p. 123). In recounting their past experiences,the parents who participated in this study demonstrated astrength and diligence that continues in the present andallows them a hope and optimism that helps them plan for thefuture care of their child and face their own process ofaging. It is important for professionals to remember thatdisability is an interpretation: one thing it interprets is anongoing life course. The meanings and interpretations of alifetime of caring for an adult child with a disability can“create new options, new ways to think, feel and relate”(Benner & Wrubel, 1989, p. 22) that have significantimplications for aging parents faced with the question of whowill care for my adult child when I am no longer able to carefor him/her. The implications of this study for futureresearch will be discussed in the remainder of this chapter.127Implications for Future ResearchThis study was restricted by its neglect of parents from avariety of socio—economic and ethnic backgrounds. Given thatthe Canadian population is becoming increasinglymulticultural, further research addressing the impact ofvarious ethnic groups would be a valuable addition tounderstanding parents’ lifetime of caring, as would studiesinvestigating class and economic differences of parents andfamilies.Participants in this study were from professionalbackgrounds, had found services for their adult child thatthey considered positive, and were people able to negotiatethe formal system of support, such as schools and socialservices. However, more research needs to be done to explorethe impact on parents who do not have access to services andprograms that allow their adult child to live independentlyand be well supported by people other than his/her parent.In addition, further studies need to be conducted on theimpact on the siblings of a child with a disability. Researchinto siblings’ roles regarding their disabled brother/sister’sfuture care would also be important to issues of futureplanning by parents for their child with a disability. Aswell, studies on the value of social networks as a way forparents to prepare for the future of their child andthemselves would be an exciting and important area for furtherstudy. Other areas of future study include an examination of128the differences and similarities of mothers’ and fathers’experiences caring for a disabled child. Because there aremany parents of children with a disability who haveexperienced institutionalization at some point in theirchild’s lifetime, a comparative study between parents whocared for their child in the community and those whoexperienced institutionalization would also be helpful tobroaden our understanding of the effects of institutionalization and the psychosocial needs of these parents’ throughthe transition of aging.SummaryThe goal of this study was to discover and describe theexperiences of aging parents caring for their adultson/daughter with a disability in the community. The researchmethod of phenomenology was chosen in order to elicit parents’stories — involving descriptions, interpretations and meanings- of a lifetime of caring. Chapter One introduced the problemand presented a brief overview as to how the study would becarried out. In Chapter Two, a discussion of thephilosophical tenets of phenomenology was presented as afoundation for the research methodology chosen. In addition,relevant literature regarding this population was presented,which revealed few qualitative studies on the experiences ofaging parents caring for an adult son/daughter with adisability. Quantitative studies, however, have focused on129limited aspects of parents’ experiences primarily addressingstress and burden, and future planning needs for the adultchild. Chapter Three presented the methodology undertaken toaddress the research question, and Chapter Four introduced anddiscussed the findings.Overall, while they recounted many difficult andchallenging times as a parent of a child with a disability,upon reflection, parents recounted numerous positive storiesabout their child and the impact he/she has had on themselvesand their lives. Of particular concern to aging parentscontinues to be the need for future planning as a critical wayto secure their son/daughter’s future needs in order that theycan begin to let go of their ongoing role as caregiver. Inthis way, aging parents will begin to face their owndevelopmental issues of aging. Social workers have animportant role to play in assisting parents in their effortsto care for their adult child through the development ofprograms and services that address the needs of both parentsand their children. Implications to social work have beendiscussed in this last chapter, primarily the need for acomprehensive understanding of, a sensitivity to, agingparents’ developmental needs and concerns as well as awillingness to hear parents out and advocate and provideappropriate services.130ReferencesAnderson, J. (1992). Process of data analysis. Unpublishedpaper presented in Nursing 522, University of BritishColumbia.Benner, P., & Wrubel, J. (1989). Primacy of caring: Stressand coping in health and illness. Menlo Park, California:Addison-Wesley.Bogdan, R., & Taylor, S.J. (1975). Introduction toqualitative research methods: A phenomenoloqical approach tothe social services. 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Australia and New Zealand Journal ofDevelopmental Disabilities, j4, (3/4), 255—259.133APPENDIX ADemographic DataDemographic Information1. Age of Mother_______Father2. Age of Adult Child:________3. I would describe my child’s disability as: mild, moderate, severe33..134APPENDIX BAgency ApprovalN(3LJcPlanned lifetimeAdvocacy Network November 26, 1993I 1)-i — 39() (.t na du \‘:ivliui-nah l(.Canada VG IC-iTel: 604 -i30-0S66Fax: 604 -i39-0{)1Chair of U.B.C. BehavioralScience Screening CommitteeOffice of Research ServicesRoom 323, IRC Building2194 Health Sciences MallVancouver, B.C. V6T 1Z3Dear Committee:Planned Lifetime Advocacy Network (PLAN) gives Joni Petrica permissionto conduct her research project “A Phenomenological Study On theExperiences ofAging Parents Caring For Their Adult Son/Daughter Witha Disability” under our auspices. We have received and reviewed awritten copy of her research intent and are satisfied her research goalswill contribute positively to PLAN’s efforts.We understand Joni Petrica is the sole researcher and her researchsupervisor is Dr. David Freeman from the University ofBritish Columbia,School of Social Work.Yours truly,EtmanskiExecutive DirectorAE/ss135APPENDIX CInitial Contact LetterpLANNovember 26, 1993planned lifetimeAdvocacy Network— ) Canada \VavIC:Canada \ S(; 1 C; -+Tel 604’ -139-95()6 (Addressee)Fax: 604 49-7OOl(Addressee)(Addressee)(Addressee)Dear (parent):Over the past 18 months Planned Lifetime Advocacy Network has workedwith Joni Petrica who is currently attending UBC’s School of Social Work.She has focused many of her student projects and papers on parentscaring for their adult Sons and daughters with mental handicaps at home.We have benefited from a research paper she has already done. I amimpressed with her maturity and sensitivity. Joni is currently conductinga research study under the direction ofDavid Freeman as part of therequirement to obtain a Masters of Social Work. She would like tointerview you about your experiences as a parent of a child with a mentalhandicap.PLAN is pleased to support Ms. Petrica’s efforts. Enclosed is a letter fromher which explains the purpose of the study and requests your permission.If you are willing to participate in the study or would like furtherinformation please contact me or Al Etmanski at 439 - 9566.Yours truly,Jack CollinsPresidentJC/ssends.THE UNIVERSITY OF BRITISH COLUMBIAl35bSchool of Social Work________2080 West Mall_ _- Vancouver, B.C. Canada V6T 1Z2_ __Tel: (604) 822-2255 Fax: (604) 822-8656Notification Requesting ParticipationTHE EXPERIENCE OF AGING PARENTS CARING FOR THEIRADULT SON OR DAUGHTER WITH A DISABILITYDear Parent:My name is Joni Petrica. I am presently in the Masters of Social Work program atthe University of British Columbia. I would like to invite you to participate in a researchstudy seeking to understand the experiences of aging parents caring for their adult son ordaughter with a disability in the community.My experience working with families who care for a child with a disability has mademe aware of the invaluable information parents can contribute to our understanding of theimpact a child with a disability has on parents and families, and, to date, little research hasbeen done to learn from parents’ experiences. Most of the information that is availablefocuses on young families. The information from this study will assist social workers tounderstand the experience of caring for a child with a disability from the perspective ofolder parents in order to better provide service to parents and families.The research will be conducted through approximately 2 -3 in-person interviewswhich will take about one to two hours each. Interviews will be audiotaped to ensureaccuracy, and will be erased upon completion of this project. All information that you chooseto provide will be held in confidence by the researcher, and all individual identifyinginformation will be omitted in the final document.The study will involve interviewing you about your experience of being a parent of achild with a disability. Your participation in this project is completely voluntary, you maychoose to withdraw at any time, and/or not to answer questions. Your decision, orinformation shared with the researcher will in no way affect services you may be receivingnow or in the future at Planned Lifetime Advocacy Network (PLAN), or any other agencyand/or association connected with PLAN.1 of 2Within a week of receiving this letter, the Executive Director of PLAN, Al Etmanski,will contact you by phone in order to clarify the consent form, answer any questions youmay have, and, should you be willing, to arrange a time for me to contact you.Should you have any questions or wish to contact me for any reason, please feel freeto call me at 263-4537. You may also contact my faculty advisor, Dr. David Freeman, at822-5030 . Thank you for your time.Sincerely,Joni Petrica2 of 2136APPENDIX DParticipant Consent FormTHE UNIVERSITY OF BRITISH COLUMBIA; School of Social Work________2080 West Mall— _r Vancouver, B.C. Canada V6T 1Z2_ _Tel: (604) 822-2255 Fax: (604) 822-8656Interview Consent FormTitle of the Study: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OFAGING PARENTS CARING FOR THEIR ADULT SON OR DAUGHTER WITH ADISABILITY.Researcher: JONI PETRICA, B.Ed., B.S.W.Masters of Social Work StudentUniversity of British ColumbiaThe purpose of this study is to discover and describe the experience of aging parents whocare for their adult son or daughter with a disability in the community.I_______________________________hereby consent to approximately 2 - 3 in-personinterviews (of about 1-2 hours each) conducted by Joni Petrica in connection with herresearch study. Should I have any questions or concerns during this research project, I maycontact Joni Petrica at 263-4537, or the faculty advisor, Dr. David Freeman at 822-5030.I understand that my participation is entirely voluntary and refusal to participate will in noway affect my present or future involvement with Planned Lifetime Advocacy Network(PLAN), or any other agency and/or association connected with PLAN. Further, I consentto the interview being AUDIOTAPED; and that the audiotape will be erased upon completionof this research project.All information that I choose to provide will be held in confidence by the researcher, and allindividual identifying information will be omitted in the final document. I will have accessto the findings upon completion of this study.My signature is acknowledgment of receipt of a copy of this interview consent form and toparticipate in this study.Respondents Signature:_________ ____Date:Interviewer Signature:___Date: -137APPENDIX EInterview Guide138QuestionsThank you for taking the time to talk with me. I believeit is very important and helpful to hear from parents such asyourself about the experience of raising a child with adisability, and I appreciate you taking the time to speak tome about your experience raising (name of child).1. Can you tell me about yourself before (name of child)was born.Probe:(1) Who was around?(2) Who was in your family?(3) What was happening in your life?2. When (name of child) was born, could you tell me whatit was like for you when you realized (name of child)had a disability?Probe:(1) What do you remember thinking?(2) What do you remember feeling?(3) What do you remember doing?(4) Who was around?(5) How did it influence your idea about being amom/dad?(6) How did your family/friends support you?(7) What do you think you’ve learned from raisingyour child?3. Raising a child with a disability is a uniqueexperience. Can you tell me what memories come tomind when you think about being a mom/dad to(son/daughter’s name).Probe:(1) What event/person has influence your experience?(2) Who has been there for you?139(3) What has shaped your experience?4. When you think back over the years, are there anyparticular experiences that have had the most impacton you?Probe:(1) How did it influence you?(2) Can you describe how you feel you have beenchanged?5. When you think about the future, what comes to mind?Probe:(1) Do you have any particular feelings or thoughtswhen you think about the future?6. You have shared so much with me over this last hour.I’d like to end the interview by asking you whatadvice you would give young parents who are raising achild with a disability?Probe:(1) As (child’s name) parent, what do you feelparticularly good about in having raised (name ofchild)?(2) What do you wish you would have donedifferently?140APPENDIX FEthical Approval________The University of British ColumbiaOffice of Research Services_ _Behavioural Sciences Screening Committee forResearch Involving Human SubjectsPRINCIPAL INVESTIGATOR DEPARTMENT NUMBERFreeman, D. Social Work B93-0791INSTITU11ON(S) WHERE RESEARCH WILL BE CARRIED OUTUBC CampusCO-INVESTIGATORS:Petrica, 3., Social WorkSPONSORING AGENCIESA phenomenological study of the experience of aging parents caring for their adult son ordaughter with a disabilityAPPROVAL DATE TERM (YEARS) AMENDEDJAN1O1994This Certificate of Approval is valid for the above term provided there is no change inthe experimental proceduresCertificate of ApprovalI 4D-The protocol describing the above-named project has been reviewed by theCommittee and the experimental procedures were found to be acceptable on ethicalgrounds for research involving human subjects.Dr. R. Corteen orDr. I. Franks, Associate ChairsD’k. D.Spratley/‘ Director, Research Services141APPENDIX GThe Experience142THE EXPERIENCE OF AGING PARENTSCARING FOR THEIR ADULT CHILD WITH A DISABILITY:PHASES OF ADJUSTMENTFIRST PHASE OF ADJUSTMENT:INITIAL REALIZATION OF THE DISABILITYPARENTS’ EXPERIENCE SOCIAL WORK INTERVENTION* The Parents’ Response * Provide:— “What have I done?” — informationloss grief and shock regarding child’sdisability and* Excessive Caregiving Demands the resourcesavailable to* The Process of Acceptance Begins parents— emotionalsupport andguidance toparents! family- empathyregardingimpact ofdisabilityon parents!family— recognition/validation ofparent’s stress,exhaustion, fearsand worries- provideprofessional!peer opportunities forparents todiscuss feelingsand tell theirstories143SECOND PHASE OF ADJUSTMENT:PARENTS’ MISSIONPARENTS’ EXPERIENCE SOCIAL WORK INTERVENTION* Extensive Caregiving Demands: * ProvideManaging Day-To-Day informationon services/programs,professionals,etc. to assist* The Mission: Parents’ Search parents in:for Help- developingchild’s— Formal supports: “No choices” potential* Multiple Roles of Parents - relievingstress/pressureof care—giving— Parents’ role as teacher- Parents’ role as physical therapist— Parents’ role as monitor * Minimize— Parents’ role as facilitator bureaucraticof information to professionals obstacles* Whereprograms /services do notexist, facilitatetheir development* Assist parentswith advocatingon behalf oftheir child* The Process of Acceptance Continues * Validate/affirm parents’diligence &— Parent’s wholistic perspective: commitment to thea bridge to acceptance care of theirchild144PARENTS’ EXPERIENCE SOCIAL WORK INTERVENTION* Acceptance Continues * Allow parentsto tell theirstories:- facilitateparents’understanding andmeaning of theirexperience bylistening to,empathizing with,& validatingtheir experiences* Adopt awholist icperspectivetoward the childwith a disabilityand parents’efforts tointegrate thechild into thefamily/community:— recognizeinherent worth ofchild— focus onstrengths &abilities ofchild— balance anunderstanding ofchild’slimitations withhis/her strengths* Educateprofessionalsworking withchild/family theimportance ofadopting awholist icperspective,including:145PARENTS’ EXPERIENCE SOCIAL WORK INTERVENTION— recognizing theimpact onparents/familiesof implementingdemanding &costly treatmentregimes* Provideresources toparents, whichencourage peersupport &interaction, andresults inadvocacy,development ofservices &psychosocialsupportTHIRD PHASE OF ADJUSTMENT:FUTURE PLANNING - WHO CARES FOR MY CHILD WHEN I DIE?PARENTS’ EXPERIENCE SOCIAL WORK INTERVENTION* Facing Their Adult Child’s * Provide anUncertain Future opportunity forparents todiscuss theirfears & concerns- Facing one’s mortality through— Continuing the role as monitor professional &peer support* Provideanticipatoryguidance toassist parents infacing theirmortality andpreparing fortheir child’sfuture146* Preparing to ‘Let Go’: * ProvideDeveloping a Social Network information,direction andsupport toparents in orderto developformal! informalsupport systems* Acceptance of One’s Self and that may assumeOne’s Self as a Parent primary care—giving whenparents are nolonger able todo so:* Acceptance of One’s Life — developingas it Has Been social supportnetwork(comprised offamily! friends)around the adultchild with adisability toassume parents’role as monitorof their child’scare* From the Everyday Experience of * Prepare forCaregiving to the Existential estate planning,Meaning wills and appropriate trustees- providingpracticalsupport:respite forparents;independentliving optionsfor the adultchild* Facilitateparents’ lifereview bylistening toparents’ stories147— help parents’identify &validate theirskills,achievements,successes &diligence asparents to ahandicapped child


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