UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

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

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata


831-ubc_1994-0594.pdf [ 2.09MB ]
JSON: 831-1.0094709.json
JSON-LD: 831-1.0094709-ld.json
RDF/XML (Pretty): 831-1.0094709-rdf.xml
RDF/JSON: 831-1.0094709-rdf.json
Turtle: 831-1.0094709-turtle.txt
N-Triples: 831-1.0094709-rdf-ntriples.txt
Original Record: 831-1.0094709-source.json
Full Text

Full Text

A PHENOMENOLOGICAL STUDY ON THE EXPERIENCES OF AGING PARENTS CARING FOR THEIR ADULT SON/DAUGHTER WITH A DISABILITY by JONI ELIZABETH PETRICA B.Ed., B.S.W.,  Western Washington University,  1983  University of British Columbia,  1993  A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SOCIAL WORK in THE FACULTY OF GRADUATE STUDIES The School of Social Work We accept this thesis as conforming to the required standard  THE UNIVERSITY OF BRITISH COLUMBIA August 1994 Joni Elizabeth Petrica,  1994  In presenting thesis this in partial fulfillment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission.  (Signature)  of  A  The University of British Columbia Vancouver, Canada  Date  /2  /  /  ii Abstract With the continued movement toward deinstitu tionalization, and community—based health care, professionals will see a rise in the number of aging parents caring for their adult son/daughter with a disability.  Little research  exists to understand the needs of aging parents, and what is available reflects quantitative studies that primarily focus on parents’ feelings of stress and burden, and their future planning concerns for the adult child.  In order to discover  and describe the totality of aging parents’ experiences caring for an adult child with a disability, this study used a phenomenological approach to elicit qualitative information. Both mothers and fathers were interviewed, and the results indicated that the presence of a child with a disability in the lives of these parents has contributed positively to parents’ sense of self, their perceptions of themselves as parents,  and the meanings and interpretations  they give to their lives in spite of having cared for a disabled child.  -  or as a result of  —  Parents’ accounts of their  experiences with professionals also suggested the value of social workers listening to parents’ needs and concerns in the context of a lifetime of struggles and demands, achievements and accomplishments.  In this way,  social workers are better  able to help parents address their own developmental needs of  i  aging by providing sensitive and timely programs and services that address parents’ unique challenges raising an adult child with a disability.  I  Table of Contents Abstract  iv iii  Table of Contents  v  CHAPTER 1:  INTRODUCTION  1  CHAPTER 2:  LITERATURE REVIEW  Introduction Philosophical Tenets of Phenomenology Parental Stress and Burden Future Planning Synthesis of Current Knowledge CHAPTER 3:  METHODS  Description of Design Sample Selection and Criteria . Description of Participants Participant Recruitment Data Collection Procedures Data Analysis Truthworthiness of Research Methodology Summary CHAPTER 4:  9 10 14 24 30  32 32 33 35 36 41 45 53  PRESENTATION AND DISCUSSION OF THE FINDINGS  Introduction First Phase of Adjustment: Initial Realization of the Disability The Parents’ Response “What have I done?” Excessive Caregiving Demands The Process of Acceptance Begins Second Phase of Adjustment: Parents’ Mission Extensive Caregiving Demands: Managing Day-To-Day The Mission: Parents’ Search for Help Formal supports: “No choices” Multiple Roles of Parents Parents’ role as teacher Parents’ role as physical therapist Parents’ role as monitor Parents’ role as facilitator of information to professionals The Process of Acceptance Continues Parent’s wholistic perspective: a bridge to acceptance Acceptance Continues  54 58 59 59 64 66 67 68 70 71 75 75 76 77 81 82 83 88  V  Third Phase of Adjustment: Future Planning Who Cares for my Child when I Die?” Facing Their Adult Child’s Uncertain Future Facing one’s mortality Continuing the role as monitor  -  Preparing to ‘Let Go’: Developing a Social Network Acceptance of One’s Self and One’s Self as a Parent Acceptance of One’s Life as it Has Been From the Everyday Experience of Caregiving to an Existential Meaning Summary CHAPTER 5:  90 91 91 93 .  95 102 105 109 112  CONCLUSIONS AND IMPLICATIONS  Conclusions Summary of Findings and Implications for Social Work Implications for Future Research Summary References  117 119 127 128 130  Appendices Appendix Appendix Appendix Appendix Appendix Appendix Appendix  A B C D E F G  -  -  -  -  -  -  -  Demographic Data Agency Approval Initial Contact Letter Participant Consent Form Interview Guide Ethics Approval The Experience  133 134 135 136 137 140 141  “As I get older I realize the most valuable thing I have to share is my story.” Mildred Dehaun, mother  1 CHAPTER 1 Introduction In 1981, the government of British Columbia made a commitment to deinstitutionalization by closing the three Provincial institutions  -  Tranquille, Glendale and Woodlands  -  providing care to people with mental and/or physical handicaps.  1 described the initial services provided Experts  by these institutions as places of safety and rest for the person with a disability and the families concerned for their care.  For elderly parents who believed institutionalization  was in the best interest of their child with a disability, the return to community living recalled a time when there existed limited resources and community rejection towards people with disabilities.  Experts reported that the commitment to  community living evoked feelings of fear, worry and guilt among many parents in spite of assurances parents were given that community based services would be available to meet their son/daughter’s needs. In addition, with the continued movement towards deinstitutionalization, the current emphasis on community living and community—based health care,  and the decreased  mortality rate among persons with disabilities and the parents caring for them, professionals will see a rise in the number 1  ‘Experts’ represents professionals in the social service field who have extensive knowledge of, and experience with, parents of children with disabilities including parents whose children were institutionalized prior to 1981. These experts provided verbal background information for this study. -  2 of aging parents caring for adult sons and daughters with a disability (Brunn,  1985; Smith & Tobin,  1989).  Only recently,  however, has the literature begun to examine the needs and concerns of aging parents who have and continue to care for their adult child.  In order to add to our knowledge about  this growing population,  this study will focus on the  experiences of aging parents, and seeks to discover and describe their perceptions of caring for a son or daughter with a disability in the community. With continued research on this population, the pressing question facing parents becomes:  What will happen to my child  when I die or am unable to provide primary care?  Implicit in  this question are three areas needing further investigation and study. To begin with, the question of who will care for the adult child with a disability when the parent is no longer able to care for him/her reflects the transition of parents through their own aging (Brunn,  1985).  In addition, this  question recognizes the lifelong commitment of many parents to care for their child with a disability often with little or no formal support, but it also raises the question of the impact such a lifetime of caregiving has on parents and their families. The literature to date has focused on various aspects of aging parents’ needs and concerns regarding the caretaking responsibilities involved with an adult son/daughter with a disability (Kazak,  1987; Minnes,  1988).  This literature has  3 attempted to address some of the effects this lifetime of caring has on parents and families.  However, the literature  has revealed that these studies have typically assumed such families are dysfunctional Houghton, Roeder—Gordon,  (Brotherson, Turnbull, Bronicki,  Summers,  & Turnbull,  1988),  and has  emphasized the “problems and difficulties families face” (Foster & Berger,  1985, p.  748).  This has resulted in studies  that have neglected the reciprocal effects of a child with a disability on parents and family members,  and the positive  contributions such a child may have on the family system.  In  addition, most of the literature has reflected data gathered from mothers; but where samples include both parents, mothers appear to be disproportionately represented. There also has been minimal discussion and research on the impact of social systems agency supports)  (e.g.,  extended family,  friends,  and cultural attitudes that effect parental  adjustment to, and ability to care for their son/daughter with a disability over a lifetime (Foster & Berger,  1985).  Often  the literature reflects a negative bias whereby the impact on families who care for a child with a disability is seen to result in “stress, problems, (Foster & Berger,  1985, p.  and presumed negative outcomes”  773).  Such research may in fact be  missing a great deal as it presupposes a definition of what that experience has been for parents.  Furthermore, there are  few longitudinal studies examining the ways the disabled child “affects and perhaps alter’s a family’s interaction”  (Foster &  4 Berger,  1985, P.  772)  at different developmental stages.  This  results in limited information regarding the effects of raising a child with a disability over a lifetime.  The lack  of a life—span perspective in the research also limits our understanding of parents’ interpretation of, and adjustment to, the presence of a child with a disability in their lives over a lifetime. The objective of this study was to understand parents’ lifetime of caring in order to elicit information that will guide the appropriation of timely services that are sensitive to,  and respectful of, aging parents’ needs and concerns.  Since much of the research to date has neglected the totality of aging parents’ experiences, with a tendency to presume such experiences as negative, this study will undertake the qualitative inquiry of phenomenology, which makes no a priori assumptions as to what the experience may have been for parents. (Morse,  As such, phenomenology seeks to elicit the meanings 1986)  parents have given to their experience raising a  child with a disability, and to facilitate an understanding (Morse,  1986)  of what that experience has been in its  totality, thus providing a description of parents’ experiences that is more wholistic than the research represented to date. The research method of phenomenology chosen for this study utilized life documents  —  the individual’s narrative  instrument to elicit parents’ stories  —  —  as an  descriptions,  interpretations and meanings of their lifetime of caring.  5 Through semi—structured interviews with aging parents, various themes have been extrapolated from the data gathered with the aim of developing rather than testing theory (Morse,  1986).  The findings of this study indicated parents’ experiences raising a child with a disability can be conceptualized in terms of three phases of adjustment with each phase being characterized by common themes. These phases of adjustment are presented in detail in Chapter Four.  Briefly, however, the first phase of adjustment  has been identified as the “Initial Realization of the Disability” when parents began to realize their child had a physical and/or mental handicap. by parents asking the question:  This phase was characterized “What have I done?” and  involved tremendous caregiving demands which resulted in enormous stress and exhaustion.  During this phase, the  process of adjusting and accepting their child’s disability began. The second phase of adjustment was represented as “Parents’ Mission” and depicted the continuation of parents’ extensive caregiving responsibilities, and their concerted efforts to develop their child’s abilities through the ongoing struggle to find appropriate programs and elicit professional services.  During this phase, mothers and fathers adopted many  roles in an attempt to meet their child’s needs day-to-day e.g., teacher, physical therapist, monitor of their child’s  -  6 programs and services, and facilitator of information to professionals. As well, parents’ descriptions of their experiences indicated that accepting their child’s disability and its impact on their lives was a ‘journey’ that began when they realized their child had a disability and continued through this second phase of adjustment.  Professionals who adopted a  wholistic perspective towards the child with a disability helped parents with the process of accepting their child’s handicap and its effects on their lives.  During this phase,  parents began both to accept the finality of their child’s disability and to recognize their own accomplishments as his/her parent. The third phase of adjustment was identified as “Future Planning: Who Cares for my Child When I Die?”  This phase  encompassed parents’ recognition of their mortality and the need to face their child’s uncertain future.  Parents’  continued their role as monitor of their adult child’s care in spite of their advancing years and declining abilities. During this phase, parents began to realize they would one day be unable to continue their caregiving role, and began the process of ‘letting go,’ characterized by the development of social networks.  Social networks was a formalized way parents  planned f or the future care of their adult child when they were no longer able to continue their caregiving roles. In addition, parents’ vivid accounts of their experience  7 illustrated that the process of acceptance, which continued through the third phase of adjustment,  included two central  themes: acceptance of one’s life as it has been; and parents’ ability to move from the everyday struggle of caring for their disabled child to an existential meaning of what that experience had been for them.  This aspect of acceptance  involved parents balancing the sadness,  loss and struggle of  raising a child with a disability with the joy, and accomplishment of a lifetime of caring.  satisfaction  By eliciting the  totality of parents’ experiences and allowing them to recount both positive and negative aspects, these parents have portrayed something important about the experience of aging parents caring for the adult child not found in the literature to date. Given the increasing numbers of adults with mental and/or physical disabilities who will become members of our communities, the experiences of aging parents caring for a son/daughter with a disability could have significant implications for government budgets, community programs.  social policies and  Social workers will need to understand  parents’ perception of a lifetime of caring in order to provide appropriate, timely services that acknowledge parents’ unique issues of aging,  as well as their continued roles and  responsibilities as caregivers to a dependent adult child. With the purpose of bringing both parents’ views forward, research question guiding this study will be:  the  What are the  8 experiences of aging parents caring for their adult son! daughter with a disability in the community?  9 CHAPTER 2 Literature Review  Introduction A review of the literature reveals little research related to aging parents’ experience of raising a child with a disability.  In an attempt to understand aging parents’  experiences,  research findings describing the experience of  young families raising a child with a disability have been drawn on,  as well as the findings related to the needs of  caregivers of the elderly  (Seltzer & Krauss,  unique transitions of aging,  1988).  Given the  this literature is inadequate to  understand the needs and concerns of aging parents. Only recently, however, has the literature begun to reflect an increased awareness of the growing number of aging parents caring for their adult son/daughter in the community. The studies that reflect this increased awareness include little Canadian content.  In addition, most of these studies  employ quantitative methodology primarily focusing on one particular aspect of parents’ concerns, failing to attend to the totality of parents’  lives,  including the positive  influences of the adult son/daughter to parents and families. A full exploration of aging parents’ perception of their lifetime of caring has not been undertaken beyond anecdotal accounts which describe some aspects of parents’ experiences. Parent narratives, however, have revealed some evidence of the  10 positive contribution a child with a disability makes to the life of families Featherstone,  (Summers, Behr & Turnbull,  1980),  1989;  suggesting the importance of research  methodology in eliciting the totality of their experience.  As  a result, the research method of phenomenology was chosen to explore aging parents’ perception of a lifetime of caring in sufficient depth to allow parents to describe the positive and negative affects caring for a child with a disability has had on their lives. The purpose of this review is to discuss the philosophical tenets of the phenomenological methodology chosen for this study,  and to situate the experiences of aging parents caring  for an adult child with a disability in the context of what is known and what is not known.  Philosophical Tenets of Phenomenolociy As previously mentioned, much of the literature on aging parents caring for their adult child with a disability reflects quantitative research, which represents positivistic assumptions concerning reality.  Such assumptions, or ways of  understanding the world, are based on the belief that there “exists an ultimate truth (Crabtree & Miller,  —  1992, p.  a natural law 8),  —  of reality”  emphasizing the existance of  “reliable and valid laws in explaining and predicting human behaviour or experience”  (Ornery,  1983, p.  54).  The research  methodologies derived by positivistic sensibilities are  11 reductionistic and deterministic, requiring that the data “be reducible to the researcher’s operational definition” 1983, p.  60),  (Ornery,  and the object of the inquiry be broken down to  its smallest parts, each to be analyzed and examined individually.  As such, the objective of quantitative research  is “causal analysis” with the belief that “measurement precedes existence”  (Omery,  1983, p.  54).  Such an a priori view of the experiences of aging parents has led to research which investigates one or more aspects of the needs and concerns of aging parents by focusing on some element of the aging person’s experience as caregiver to a son/daughter with a disability plans for care,  etc.  -  e.g., burden,  stress,  future  Often these studies reflect a negative  bias on the impact on parents’ caring for their child with a disability.  Such definitions reflect established theories  that assume aging as loss (Benner & Wrubel, disability as disruption and stress Brotherson,  1986)  1989)  (Turnbull,  and  Summers &  and result in research inquiries which lead  to a fragmented exploration of parents’ experiences. Plummer  (1983)  states that “much of social research is  dominated by the search for the generalizable laws”  (p.  2)  and  an 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 tottering towards suresafe absolutism”  (Plummer,  1983, p.  4).  Such  research may in fact be missing a great deal because it  12 presupposes a definition of what that experience has been for parents.  Benner and Wrubel  (1989)  state:  ...researchers devise ways of conceptualizing, organizing and describing personal meanings not in terms of specific content over a lifetime but in abstract or generalized categories to which groups of people might belong (p. 34). In contrast, Lincoln and Guba  (1985)  discuss the tenets of  qualitative inquiry as replacing the “naive realism” inherent in the assumptions of quantitative research with the “assumption of multiple constructed realities”  (p.  295).  They  state: “Reality” is now a multiple set of mental constructions . . . those constructs are made by humans; their constructions are in their minds, and they are, in the main, accessible to the humans who make them...(p. 295). Qualitative research, as suggested by Sandelowski be conceptualized as a crystal reality”  —  and, as such,  (Guba & Lincoln,  1985, p.  -  (1994),  “a multifacited view of  is “aimed at the search for meaning” 157).  Qualitative inquiry attempts  to avoid “reducing people to statistical aggregates” Taylor,  1975, p.  4).  the human experience  Instead, —  can  e.g.,  (Bogdan &  it acknowledges that much of  ideas,  feelings and motives  —  can  best be discovered, described and understood by employing a methodology that “gives attention to.  .  .  the ways the phenomena  appear in different perspectives and modes of clarity” 1983, p.  (Ornery,  51).  As one approach to qualitative research, phenornenological methodology seeks to “investigate and describe all phenomena,  13 including the human experience,  [and] the ways these phenomena  appear in their fullest breadth and depth” 50),  1983, p.  including the meaning of the experience to the  participants.  Phenornenology is a “holistic approach to  studying deep human concerns” p.  (Ornery,  In addition,  195).  (Pallikkathayil & Morgan,  1991,  its value base acknowledges the  spiritual, emotional and physical aspects inherent in one’s understanding of one’s experience, and recognizes the uniqueness of each individual as well as the wisdom of his/her understanding of that lived experience Morgan,  (Pallikkathayil &  1991).  Phenornenological research method was chosen to explore the experiences of aging parents because it is consistent with this researcher’s values and is a methodology that allows parents to speak about their experiences directly, and makes no preconceived assumptions about what that experience has been for,  or meant to, parents.  From the phenornenological  perspective, then, this study seeks to understand (1)  how the  experience of caring for an adult child with a disability affects aging parents, and (2) what the elements  —  or themes  —  are that make up this experience. The qualitative method of phenornenological research used in this study involved gathering data through tape-recorded interviews of parents’ accounts of their experiences as caregivers of a child with a disability.  This data then  became the text from which themes and concepts were identified  14 and theories developed.  Phenomenology attempts to reconnect  the frequently overgeneralized, theoretical accounts of human existence 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 methodology guiding this research study, a review of the literature is also important in order to situate the experiences of aging parents caring for their son/daughter with a disability in the context of what is known and not known.  The available  research on parents’ experiences was represented by two bodies of literature -  —  Parental Stress and Burden and Future Planning  which will be discussed in the remainder of this chapter.  Parental Stress and Burden From the perspective of family stress theory, Minnes (1988)  examined the relationship between the characteristics  of the mentally handicapped child and the family’s resources as potential factors in predicting maternal stress raising a child with a disability.  Minnes’ quantitative study involved  60 mothers who attended an outpatient clinic in Toronto. Mothers were first interviewed and then asked to complete four self—administered standardized questionnaires designed to measure parental stress,  internal and external family  resources, and child and parent characteristics.  The results  15 of this study indicated that child characteristics and degree of handicap, age of child) meeting resources  (e.g.,  external resources)  and family crisis-  family relations,  internal and  emerged together as significant predictors  of stress associated with the following variables: family opportunity, burden.  However,  (e.g., type  life—span care,  in all cases,  finances,  limits on  and personal  family crisis—meeting  resources were two to four times greater predictors of stress than the characteristics of the mentally handicapped child. In addition,  “family stress alone emerged as significant  predictors of stress associated with dependency and management, (Minnes,  family disharmony,  1988, p.  lack of personal reward”  189), while the characteristics of the  mentally handicapped child was a significant predictor of stress associated with the cognitive and physical impairment of the child.  As well, the degree of the child’s disability  was also found to be a significant predictor of stress associated with family opportunity,  life-span care, physical  limitations and personal burden. Additionally,  the age of the child was associated with  parental stress, with the child’s cognitive abilities becoming less of a concern for mothers over time, and stress associated with the preference for institutionalization increased with age.  Minnes suggested that as mothers age, they may become  more accepting of their child’s limitations; however, the author speculates that mothers may also find the child’s care  16 demands “can cause considerable disruption to family life” 190)  (p.  leading them to begin considering institutional care. This study also suggested that mothers’ perception of  stress did not depend on the type of handicapping condition. In contrast,  the type of mental handicap did appear  significant 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, social climate and support.  and familial  The results indicated that “lower  levels of burden and parental stress were found for mothers whose adult children had Down Syndrome than for mothers of those whose retardation was due to other factors” Krauss,  1989, p.  310).  (Seltzer &  The authors suggested this may be the  result of greater knowledge, developmental predictability and known causes of this type of mental disability. Seltzer and Krauss  (1989)  further reported that “higher  levels of parenting stress was associated with the mother’s receipt of a greater number of formal services” addition,  Lutzer and Brubaker (1988),  families in Ohio, increased,  308).  In  in their survey of 155  also revealed that as the age of parents  so did their need for “temporary out-of—home living  arrangements” handicap.  (p.  (p.  14)  for their son/daughter with a mental  Given the present climate of deinstitu  tionalization,  Seltzer and Krauss  considering residential care may,  (1989)  suggest mothers  in fact,  face increased  stress due to negative public opinion towards out—of—home care  17 and the low availability of resources. Minnes  (1988)  also reported that mothers who indicated  high levels of stress associated with increased life span care and physical limitations of their mentally handicapped child also reported higher levels of professional and agency involvement. This finding was cited by Wilgosh, Waggoner and Adams  (1988)  as well, who suggest that professionals may not  be meeting “the type and degree of professional support” 190)  needed by mothers.  (p.  Since increased formal supports are  traditionally expected to decrease parental stress associated with caring for a child with a disability, professionals and policy makers will need to examine the effects of possible bureaucratic obstacles to parents accessing needed resources, as well as the attitudes conveyed by those administering support. Although the methodologies used in the studies cited above begin to identify variables contributing to feelings of parental stress and burden, such research is limited in its ability to explore the complex and changing factors involved in parental attitudes, concerns and needs over time.  Some  contradictions and unexpected results have emerged regarding the relationships among such variables as parental stress and age,  and the characteristics of the adult child with a  disability. For example, while Seltzer and Krauss  (1989)  did find a  positive correlation between mothers’ feelings of stress and  18 burden and the risk factors of the mentally handicapped child (e.g.,  etiology and severity of disability), their study also  indicated maternal risk factors (e.g., years of education, marital status) (cohesion,  socio—econoinic level,  and family social climate  expressiveness, communication, recreation) most  strongly pertained to mothers’ sense of well—being.  In  addition, when compared to their age peers and caregivers of the elderly, mothers of this study indicated substantially greater health, higher morale, and no more burden or stress “despite the long duration of their caretaking roles, despite the unique qualities of their children”  (p.  and  309).  The methodology used in this quantitative study reflects the bias that having a child with a disability presents a greater stressor, and will effect parents’ sense of well—being more negatively than other major life events facing parents. While parents of a disabled child will encounter unique stresses beyond the experiences of “more typical families” (Wilgosh, Waggoner & Adams,  1988, p.  255),  the findings  suggest the stressors inherent in raising a child with a disability may not be perceived by parents as any more stressful than other unexpected and challenging circumstances. As well, these findings indicate there are many factors contributing to the impact of a child with a disability on aging parents.  As Seltzer and Krauss (1989)  suggest, the  relationship between parents’ sense of well—being,  stress and  ability to continue caregiving over a lifetime “appear more  19 complex than initially assumed”  (p.  310).  Further research to  investigate the meanings parents give to their child’s disability, the impact that disability has on their lives over a lifetime, and the feelings parents have towards formal support as they age,  is needed to provide direction for  sensitive and timely delivery of programs and services targeting this growing population. In an attempt to understand parental levels of stress and burden associated with caring for a child with a mental handicap,  Kaufman,  Campbell and Adams  (1990)  interviewed 57  parents aged 46—80 years receiving services in Alabama. Through structured interviews employing both open— and closed— ended questions, parents’ level of stress, burden and the child’s level of adaptive/maladaptive behaviour were measured. The results indicated that parents’ feelings of burden and stress was positively related to the child’s maladaptive behaviour.  However, parental reports of stress were inversely  related to caregivers’ ages, and research  —  —  consistent with other  was positively correlated with “time required for  care provision”  (p.  48).  In general, parents in Campbell and Adams’  (1990)  study  reported moderate levels of stress and burden with nearly half the parents reporting “no particularly difficult problems associated with their caregiving responsibilities”  (p.  48).  Furthermore, an inverse correlation between the age of the parent and the level of stress was reported.  The authors  20 suggest there may be multiple factors,  such as cultural  influences, parental beliefs, and the health of parents, which may influence parents’ perception of stress and burden. well, the results that “older parents.  .  As  .reported lower stress  than younger parents may indicate that the older parents have come to terms with the long—term care responsibilities more successfully that younger parents”  (p.  50).  However, the  findings that older parents of adult children with a disability report less stress than younger parents is not supported by Kazak (1987). Kazak (1987) who studied 252 families representing adult children from three different disability groups, matched control groups,  and including  found “the highest degree of personal  stress for the parents of the older, mentally retarded children could be related to parental age, child age, the nature of mental retardation, or the process of institutionalization”  (p.  144).  These findings were also  consistent with the research conducted by Wilgosh, Waggoner and Adams  (1988), who present one of the few qualitative,  Canadian studies on parents caring for a child with a disability available in the literature. The limitations of the studies conducted by Kazak and Kaufman et al.  (1990)  (1987),  lie in their methodology.  Quantitative research designed to measure the degree of stress and burden only allow for speculation regarding the multiple factors contributing to parents’ perceptions of stress,  and  21 consequently leads to an incomplete understanding of aging parents’ needs and concerns over time.  Phenomenological  research, with its goal of describing parents’ experiences, would allow parents to reveal what has been most meaningful to them regarding their parenting experience with the purpose of better understanding their changing needs and concerns over time. Wilgosh, involving  et al.  conducted a qualitative study  (1988)  (p. children unstructured interviews with 23 parents of  whose mental handicap ranged from mild to severe, with ages ranging from 6 to 19 years.  In an effort to understand the  stress experienced by families with a child with a disability, and to examine “parent—professional relationships”  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, the emerging themes included: parents’ comments on their emotional stress; future care needs of the child; multiple parental roles as a result of their active involvement in their child’s care; significant effects on the family as a result of the presence of the disabled child; and both positive and negative relationships with profession and agency supports.  The order  of importance parents gave each of these themes differed with regard to the severity of the child’s disability. example,  For  future concern for the child’s care needs was ranked  more important among parents of children with severe  22 disabilities,  and the care demands of the child increased with  the “age and size of the child”  (p.  The effects on the  258).  family regarding the presence of the child with a disability included: (p.  258),  effects on siblings,  “strong within-family support”  and time demands required to care for the child with  a disability. The benefit of this study lies in its qualitative methodology.  Parents were given the opportunity to speak  about both the negative and positive aspects of caring for a son/daughter with a handicap.  The results suggested there are  both similarities and differences among families caring for a child with a disability, depending on the severity of the handicap.  These differences in parental concerns may have  implications as to what programs,  services and support systems  parents who are caring for children with varying types and degrees of disabilities require. As well, the results of this study point to the need for professional sensitivity and awareness of parents’ roles and responsibilities as caregivers and the impact such caregiving has on parents and the familial system.  Such professional  awareness is a critical component to minimizing conflict between parents and professionals, and developing a “mutually supportive parent/professional partnership” 1988, p.  (Wilgosh,  et al.,  259) with the goal of assisting parents to care for  their child at home. The limitation of this study is that no aging parents were  23 interviewed and so the experience of aging parents remains unexplored.  This study suggested that concerns about the  child’s future care needs increased as parents and their children age,  and in relationship to the severity of the  child’s disability.  Qualitative research that addresses the  experiences of older parents will add important information regarding the particular needs of this population. The literature regarding parental stress and burden reveals the growing need for continued research into the needs and concerns of aging parents who provide long—term care to an adult child with a disability.  This need is based on the  realization that there is an ever increasing number of aging parents continuing their caregiving responsibilities well past the normative stage of parenting.  And,  in spite of the  research which is emerging, there remains a gap in identifying how best to provide services for aging parents in ways that reflect their own process of aging, and their unique roles and responsibilities as parents providing care for a son/daughter with a disability (Foster & Berger,  1985; Lutzer & Brubaker,  1988). Because caregiving responsibilities continue throughout parents’  lives,  future plans must be made for parents’  caregiving role to carry on once they die.  The second body of  literature reflects the importance of future planning for parents when they are no longer able to continue their caregiving role.  24 Future Planning In addition to the research addressing parental stress and burden, there is another body of literature which speaks to parental need for future planning as a critical and fundamental component to assist parents through their own developmental transitions, and to lessen the burden of continuous caregiving responsibilities of aging parents. As a result of her clinical experience with parents over 65 years old who care for a child with a disability, Brunn (1985)  addresses the importance of future planning to aging  parents.  Using the framework of developmental theory, Brunn  believes it is critical to assist aging parents to acknowledge the ending stage of their life by addressing issues of mortality and accepting their life’s work as parents. (1985)  Brunn  writes:  .parenting was their life’s work. Success in their work means being able to die in peace; a sense of failure interferes with the need to be reassured about their legacy and their right to die (p. 136). A critical component in this process,  according to Brunn,  is  permanency planning for parents’ adult child with a disability.  Permanency planning involves parents preparing  for the future care needs of their adult son/daughter once they are unable to continue their caregiving role.  In dealing  with the primary care needs of their adult son/daughter, the parent is then able to address his/her own development tasks associated with aging. The benefit of this non-researched based study is that it  25 highlighted the particular issues of aging, autonomy and dependency”  (Brunn,  1985, p.  such as “control,  133)  facing many  aging parents with an emphasis on the added demands presented to parents as a result of caring for a dependent adult child. The limitation, however,  is that the problems, needs and  concerns of aging parents were presented from the perspective of the professional, not of aging parents.  The process of  aging presented by (p. Brunn is primarily one of loss and unfinished business,  and the experiences of aging parents  chosen for discussion are mostly negative.  Brunn (1985) makes  the assumption that most “parent/child relationship[s] have been symbiotic”  136), that “such a parent has little  objective understanding of the problems of the child”  (p.  137)  and that part of parents’ frustration in allowing someone else to assist in the care of their child is a result of “their own unfulfilled needs to be parented”  (p.  137).  Brunn does not  represent the strength and wisdom demonstrated by many aging parents who have met the challenges and demands of a lifetime of caring. Brotherson,  Turnbull, Bronicki, Houghton, Roeder—Gordon,  Summers and Turnbull  (1988)  examined the frequency with which  families plan for the future needs of their adult son/daughter with a disability, and utilize support in the planning process.  Also examined was the association between social  supports and future planning, and levels of family functioning.  26 Their study included families of adult children with both mental and physical handicaps who were over the age of 18 and living with their parents.  The level of the adult child’s  disability was reported by parents to be evenly distributed from mild to severe.  The study consisted of telephone  interviews which utilized standardized survey questions and semi—structured interview questions. The results of this study indicated there was no difference in response patterns between parents caring for a child with a physical or mental disability regarding their “use of social supports” and “frequency of planning for adult needs”  (p.  168).  When parents were asked what their greatest  need in future planning was, their most frequent response was a need for residential options in the community,  followed by  socialization for those adults with a mental handicap,  and  employment/vocational choices for those with a physical disability.  In addition, this study indicates that parents do  plan for the future needs of their adult son/daughter, and there is a positive correlation between frequency of planning and use of social supports, and effective family functioning. These results suggest the importance to families of parents being able to plan for their son/daughter’s future,  and is  helpful information in an effort to understand the needs of aging parents. The strength of the studies conducted by Brunn (1985) Brotherson et al.  (1988)  is the degree to which they  and  27 acknowledged the importance of services and programs to address the future planning needs of aging parents, and the recognition of the systemic relationship between the care needs of the adult son/daughter and the concerns of aging parents. This literature also highlights the lack of community resources available to aging parents caring for the adult child with a disability.  In fact, the parents themselves are  often considered as the resource, not as recipients of resources.  Most services focus on the needs of the adult  child with a disability (Grant, Smith & Tobin,  1990; Kaufman,  et al.,  1990;  1989) while frequently overlooking or  minimizing the needs of the aging parent. Research addressing the totality of parents’ experiences is needed to elucidate the ongoing concern regarding the future care of the child with a disability and the affect this concern has on the aging process of parents.  Quantitative  studies seeking causal relationships between children with disabilities and the impact on parents’  lives often provide a  “simplistic reduction and abstraction of a part” p.  61)  of parents’  lives.  (ornery,  1983,  Phenomenological research  recognizes the “whole may be quite different from the sum of its parts”  (Omery,  1983, p.  60).  As such, the underlying  values and beliefs of phenornenology direct the researcher to explore the experience of aging parents as a phenomenon that is “holistic and meaningful”  (Omery,  1983, p.  62),  and  28 considers parents’ past, present and anticipated future joys and sorrows as constituting the meaning of aging parents’ experiences.  As Benner and Wrubel  (1989)  state,  “. .  .personal  meanings determine what coping options are available but they do not prohibit possibility”  (p.  187); thus, as professionals  seek to understand what ‘personal meanings’ parents attribute to the presence of a child with a disability in their lives, parents can be assisted to both recognize and create new conditions for possibility. Grant (1990)  conducted a study in Wales to identify  parents’ attitudes towards the future care needs of their adult child with a disability.  One hundred aging parents were  interviewed twice, with a two year gap between interviews. The results indicated that nearly half of the parents had major changes in their choice of future care. writes:  Grant  (1990)  “Against the background of commitment and deep  concern, major swings in carers’ hopes and expectations for the future are taking place”  (p.  363).  Further analysis illustrated that social context variables (e.g.,  loneliness of parent,  social class, available support  from kin and friends) were found to be more significant than physical care needs of the adult child and the age of the parent in their consideration of residential placement.  Grant  stated: Of particular note in the present study is the way in which social support and loneliness appear to be such dominant influences and override child—related variables such as physical dependency and presenting  29 problem behaviour in their effects of anticipated care options (p. 371). Grant acknowledged that the results of his study only begin to explain aging parents’ attitudes about the future care needs of their son/daughter.  However,  the strengths of  Grant’s study lie in both its qualitative and quantitative methods of data collection. parents’ planning,  Grant extrapolated themes from  stories about their considerations of future care and from these common themes, has attempted to  statistically analyze key variables in order to identify important associations between various independent variables and particular parental decisions regarding future care planning. Grant’s study emphasized the numerous factors involved in understanding aging parents’ commitment and concern for the care of their adult disabled child both in the past and for the future.  In addition, his study highlighted the critical  role future planning plays in the lives of aging parents.  The  results also suggested that professionals must be cognizant of factors constituting aging parents’ social context friendship/kinship support,  —  such as  social class and loneliness  attempting to understand and address their needs.  —  when  To  understand parents’ social context, means taking into consideration both the positive and negative influences the presence of a child with a disability has had on parents and families,  as well as the meanings parents give to their  lifetime of caregiving.  Grant stated:  30 That the support and well-being of such a large number of mentally handicapped adults should lie in the hands of so many elderly people whose contribution is still largely unrecognized and unsupported represents yet another way in which society fails to value its oldest citizens If (p. the experiences of a lifetime still have anything to offer the world in wisdom and reflection, then further longitudinal and qualitative studies of older care—givers in different cultural contexts are called for as a matter of considerable urgency 372). Furthermore, parents’ social context will influence the personal meanings they give their experiences as a mom/dad to a child with a disability, and these meanings will inform what parents consider to be future needs and acceptable possibilities.  Professionals assisting aging parents in their  efforts to continue their role as caregivers and negotiate their own process of aging must be cognizant of these factors in order to better address parents’ needs.  Synthesis of Current Knowledge A review of the literature demonstrated an incomplete and inconclusive understanding of aging parents’ experience of a lifetime of caring for a child with a disability.  The  literature revealed empirical studies which have utilized quantitative research methods, and consequently, have examined the experiences of aging parents in terms of a few variables such as stress and burden.  Such research frequently neglects  the 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’  31 experiences, and typically make assumptions as to what stressors and needs are for aging parents.  Parents’ concerns  may be very different from what professionals believe to be important; also, the research indicates the complexity involved in understanding what factors contribute to aging parents’ ability to care for their adult child with a disability. There is,  in addition,  a lack of qualitative research that  seeks to discover and describe the experience of aging parents who care for their adult son/daughter with a disability.  Much  of the research which does exist, reflects younger parents’ experiences.  The studies which address the concerns of aging  parents frequently focused on future planning issues only. Most studies reviewed do not incorporate Canadian content. In order to consider the totality of parents’ experiences and in an attempt to offer a more wholistic perspective to the research conducted so far, the inquiry undertaken in this study employs the qualitative design of phenomenology in an attempt to discover and describe aging parents’ experiences caring for a son/daughter with a disability.  Further study  into the needs of aging parents is essential as professionals in the fields of gerontology and developmental disabilities see an increasing rise in the number of aging parents caring for their son/daughter with a disability.  32 CHAPTER 3  Methods  Description of Design The research question guiding this study directed the researcher to the exploratory design of phenomenology. Phenomenology seeks to “understand all data in the experience under study from the perspective of the participants.  .  effect that perspective has on the lived experience.  .  individual”  (Omery,  1983, p.  50).  .  .and the of that  Phenomenology is  appropriate to the investigation of aging parents’ caring for their child with a disability because it provides a more complete picture as to what that experience has been for parents than has been presented by quantitative research, to date.  As well, phenomenological methodology is congruent  with the values of this researcher and respectful of the participants of this study.  Sample Selection and Criteria Generalizability and representative sampling in the strictest sense is not the aim in qualitative research. Instead, the criterion of applicability whereby “the findings of a particular inquiry have applicability in other contexts or with other subjects” goal.  (Lincoln & Guba,  1985, p.  290)  is the  The purpose of phenomenological research is to  “facilitate understanding, for description, and to elicit  33 meaning”  (Morse,  1986, p.  184).  Sample size therefore remains  small as a great deal of verbal data is elicited from participants who are able to articulate and “illuminate the phenomenon being studied”  (Sandelowski,  1986, p.  31).  As  such, theoretical or purposive sampling was chosen because the researcher was “familiar with the setting and the actors” (Morse,  1986, p.  184)  and hoped to locate participants who  could adequately express the meaning of their experience with “accuracy, precision, and completeness” Selection criteria, therefore,  (Morse,  1986, p.  185).  included mothers and fathers  sixty years and older caring for their adult son/daughter with a disability in the community, homes.  either in their own or group  Participants of this study had not experienced their  child living in an institution for the mentally/physically handicapped.  The researcher was interested in information  about parents’ experiences with their son/daughter’s transition into adulthood; therefore, the adult children of the participants in this study were twenty-five years and older.  No subjects fitting the sample criteria and  voluntarily choosing to participate in this study were excluded.  Description of Participants Given the financial and time limitations of the researcher, a sample size of five was chosen.  The goal of  this phenomenological study was to accurately describe the  34 experience of aging parents caring for their adult son/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 to  include her in the data analysis as she was unable to articulate 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 68 years old.  One mother was single as a result of divorce while  the other two mothers were married to the fathers who participated in this study.  The married couples were  interviewed individually without their partners present in order to elicit their experiences separately. Therefore, this study reflected in—depth interviews from three mothers and two fathers. It was determined that minimal demographic information was required for this study. to parents,  Therefore, to be the least invasive  only their age, the age of the adult child and  his/her level of disability was collected from participants in order 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 school teacher prior to having children.  The third mother in this  35 study had been a school teacher for children who were deaf prior to raising a family.  One father was a retired school  teacher, while the second father had been employed by the federal government.  Their adult son/daughters were between  the ages of 31 and 34 years old and presently in semiindependent living situations in the community.  Parents  identified their adult child’s disability to be moderate to severe.  Their disabilities included autism, mental  retardation and cerebral palsy.  These parents also had other  children in addition to their son/daughter with a disability.  Participant Recruitment Participants were recruited through Planned Lifetime Advocacy Network.  Agency approval  (Appendix B) was obtained  prior to selection of participants.  An initial contact letter  (Appendix C), which introduced the study,  its purposes,  and  the researcher, was sent to potential participants by the Executive Director of Planned Lifetime Advocacy Network, and follow—up telephone calls by the Executive Director were conducted after letters were received.  Interested  participants were then contacted by the researcher who more fully informed them of the study, and to participate  -  -  for those who agreed  arranged for the first interview.  Participants were informed of their right to refuse to answer any questions or withdraw from the study at anytime.  36 As well,  confidentiality was ensured by stripping all  individual identifying information from the data collected. In addition,  the transcripts were only read by the researcher,  the transcriber and the thesis committee to ensure participant confidentiality.  Written consent  (Appendix D)  was obtained  from all participants at the onset of the first interview, and access to the results of the study were made available to all who participated.  Data Collection Procedures Data gathering procedures and analysis were conducted according the methods of Giorgi  (Ornery,  1983).  Interviews are  a critical component to phenomenological research in that they provide one vital way to obtain the detail necessary to explore the experience of participants in such a way as to It  let the experience unfold as it exists for the subject in an  unbiased way”  (ornery,  1983, p.  56).  Through two semi-  structured interviews with each participant utilizing an interview guide (Appendix E), participants were asked to describe their experience of parenting an adult son/daughter with a disability.  An interview guide was chosen in order to  elicit parents’ description of their experiences raising a child with a disability, which included parenting at the various stages of the child’s development, the impact on themselves and their families of a lifetime of caregiving,  37 external and internal support systems, feelings about the future.  and their thoughts and  The interview guide provided  minimal restrictions when eliciting the depth and breadth of parents’ experiences, yet also provided a reference point for parents to begin their discussion.  The open ended questions  were designed to allow parents to recount their experiences at whatever point in time was meaningful to them and to elicit both the positive and negative thoughts and feelings that may have occurred over time.  The first interview utilized the  interview guide while the second interview provided an opportunity for clarification of participants’ meaning and deeper inquiry into parents’ experience. The interview guide was pretested with one mother who fit the sample criteria, with the exception that she had placed her child in an institution for a portion of her daughter’s life.  Since the purpose of pre-testing the interview guide  was to determine whether participants would feel comfortable speaking about their experience, and to determine whether or not the trigger questions would elicit the depth and breadth of what that experience had been for parents,  it was  determined that this mother represented the sample criterion sufficiently to participate in the pre-test.  In addition,  she  had been a professional social worker as well as advocate for her daughter with a disability and in this way held similar characteristics to those of the participants of this study. She herself was not a part of the sample population who  38 participated in this research inquiry.  No changes were made  to the questions at that time as this mother found the open ended questions had elicited her experiences in a comfortable and complete way.  With the exception of the one mother who  found it difficult to reflect and articulate her experience raising two handicapped sons, those parents who were included in this study demonstrated no difficulty talking about their experiences.  One of the fathers who participated in this  study stated at the end of the interview that “You’ve drawn me out pretty well” suggesting that the interview guide had allowed him to recount his experience in depth. Interviews were conducted in parents’ homes in order to be the least intrusive on parents’ time.  In addition,  all  interviews were audiotaped for accuracy of data collection. This data was then transcribed and the transcriptions became the data used for analysis. end of the project,  Audiotapes were destroyed at the  and all identifying information was  removed from transcriptions.  Interviews lasted approximately  one and one—half hours, and the researcher was invited for tea either during or after each interview. During the first interview, the researcher invited parents to talk about their experiences of caring for their son/daughter with a disability.  In order not to disrupt  parents’ flow of discussion, at the end of the interview the researcher asked participants to discuss in more detail topics which required further elaboration.  39 Prior to the second interview, each parent was given their transcript in order to ensure accurate transcription of both the account and the meaning of their experiences.  This  additionally allowed parents to review what they had said during the first interview before meeting for a second time, thus facilitating further discussion. Since all the participants shared very detailed stories about their child with a disability and their experiences as his/her parent, a concern that confidentiality might be compromised should certain portions of the individual transcripts be quoted in this study was raised by one mother. This concern prompted the researcher to review and discuss with each parent individually those specific, personal quotes which were lifted from their transcript as examples supporting the conceptual framework developed to represent parents’ collective experiences. Due to the unavailability of two parents, only three parents were given the opportunity to veto the use of specific, verbatim quotes in the event they felt its use would violate their confidentiality or misrepresent their experience if taken out of the context of the entire transcript, and used in the conceptual framework developed in this study (as presented in Chapter Four).  All three parents stated they  would be comfortable having the quotes appear in this study. For the remaining two parents who were not able to review the specific quotes that were used as examples of their  40 experience,  they were asked to review the transcript in its  entirety to be sure they would be comfortable if excerpts from their interviews were used to highlight the conceptual model of parents’ experience.  These two parents also felt  comportable with verbatim quotes being used. By providing participants with the opportunity to review their transcript prior to the second interview and giving them a chance to authorize the use of specific verbatim quotes, the researcher felt parents’ role as research participants was strengthened.  As a result of being able to permit or deny the  use of specific quotes, parents were given more control over the representation of their experience in the final presentation of the findings, and the trust between researcher and participants was deepened, which would encourage greater depth and breadth of information provided during the second interview. The second interview occurred for the purposes of clarifying issues discussed in the first interview, as well as to invite further elaboration on topics that were introduced by participants during the first interview.  The second  interview also allowed the researcher to investigate the assumptions that she had been formulating during the preliminary analysis of the first interview and to validate themes that emerged from the interviews.  Furthermore, the  second interview allowed the researcher to present the preliminary conceptual framework to three participants in  41 order to verify its credibility in representing their This conceptual framework incorporated the data  experiences.  analysis from only three parents’ interviews and had been developed prior to the second interview with these participants.  The framework was therefore presented to three  parents for verification and further elaboration of their experiences.  Due to the time constraints of the remaining two  parents, data analysis, to the point of including the themes of these two parents into the preliminary conceptual framework, had not been completed at the time of their second interview.  Therefore, the framework was not presented to  these two parents.  The second interview ended when the  researcher determined that an understanding of the experience had been gained and the “categories [were] ‘filled’”  (Morse,  1986, p.  considered  186).  Data Analysis The phenomenological method of data analysis was based on several sources which included Giorgi’s steps for data analysis,  as presented by Ornery (1983),  outlined by Anderson (1992).  as well as the steps  This process included  transcribing data from audiotaped interviews and reading the transcriptions “to get a sense of the whole” 52).  (Ornery,  1983, p.  The researcher “bracketed” any preconceived ideas about  the experience being discussed.  Bracketing is a technique  42 used in phenomenological research to eliminate, possible,  the presence of researcher bias.  as much as  Ornery  (1983)  states: The phenomenological method is approaching the phenomenon with no preconceived expectations or categories, performing some form of bracketing to define the limits of the experience, and then exploring the meaning of that experience as it unfolds for the participants (p. 54). The interviews were transcribed by a typist.  Upon  receiving the completed transcript, the researcher listened to the tape while checking the transcript for errors, necessary corrections and changes were made.  and  This process  further assisted the researcher in formulating a sense of the whole. The transcript was then read again, preliminary open coding was undertaken.  line by line,  and  Notes were made on  the transcript to indicate what was not clear and to begin identifying micro—level units of meaning or themes.  The  concrete language of the participant was used at this stage. The transcript was then read several more times, very slowly, to identify preliminary analysis using meaning units or themes.  The process of moving from the micro—level, open—  coding level of analysis, which utilized the participant’s own language, to examining the data for larger overarching themes enabled the researcher to gradually develop a preliminary coding framework.  As the process continued,  subthemes were  identified and elements of each theme and subtheme were arranged.  The process of developing further codes and a more  43 extensive 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 of science”  (Omery,  1983, p.  58).  Differences and similarities  between participants were noted. The themes which emerged suggested some broader concepts, which were also noted.  These concepts formed the basis of the  researcher’s preliminary assumptions about parents’ experiences caring for their son/daughter with a disability, and was clarified further through the subsequent second interviews. In addition,  as the themes developed,  it appeared that  some categories were redundant; therefore, collapsed into another. two categories:  one category was  For example, there were originally  “Multiple Roles of Parents” and “Parental  Behaviourial Responses.”  It became apparent that “Parental  Behaviourial Responses” consisted of examples which encompassed “Multiple Parental Roles” and therefore offered no new insight into parents’ experiences. As well, the subtheme “Impact on Self” under “Self—Concept”  —  -  originally found  listed examples which were also found  within other categories such as “Parental Emotional Response” (e.g.,  “feeling helpless,” “very hard, very frightening”)  “Coping Techniques and Strategies”  (e.g.,  or  feelings of “victor  or 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 the theme “Coping Techniques and Strategies.”  As the conceptual  framework of parents’ experiences developed, however,  it was  decided that participants’ examples best illustrated a “Process of Acceptance,” and coding was changed at that time. During subsequent interviews, the researcher explored the concept of acceptance with parents in greater detail in order to elicit an understanding of its meaning to them over time. After reading the transcripts several times,  it appeared  that the experience of parents encompassed a time sequence. The category “Phases of Adjustment” was therefore developed and sub—categories and key themes were then identified and organized as elements within their respective time sequence. Throughout the process of data analysis, the researcher continued to go back to the original research question and reviewed the primary goal of this research methodology in order to help clarify and direct the development of themes and concepts.  The research goal was to describe parents’  experiences, and the process of identifying themes that emerged from the data was to be descriptive of what that experience had been like for parents. During the process of data analysis, a list of questions was developed that directed the researcher to explore participants’ meanings in greater depth.  The process of  creating this list helped the researcher “bracket” the  45 assumptions that were being made about parents’ experiences while simultaneously formulating broad concepts and early clusters of themes and subthemes.  Information that was  unclear during the first interview was presented to participants for further elaboration.  In addition,  the broad  concepts and preliminary clustering of themes were synthesized and integrated into a descriptive structure, which later became the conceptual framework presented in Chapter Four to represent parents’ experience raising their son/daughter with a disability.  As mentioned previously, during the second  interview, this conceptual framework was presented to three 2 to verify its accuracy as a representation of participants what their experience had been.  The data collected during the  second interview was subject to the above review procedures and,  once again, the data from the second interview was  integrated into the conceptual framework.  Truthworthiness of Research Methodology For quantitative research, truthworthiness is typically measured in the form of validity and reliability.  In  qualitative research, however, truth value refers to the fact that the findings of an inquiry accurately represent the 2  Due to the time constraints of the remaining two participants, the conceptual framework was not presented to these parents for verification. However, the general concepts comprising this framework e.g., phases of adjustment, journey of acceptance were discussed with these two parents during their second interview in order to elicit further elaboration and clarification of their experiences. —  —  46 experience of the participants.  The truth value of a  phenomenological investigation “resides in the discovery of human phenomena or experiences as they are lived and perceived by subjects, rather than in the verification of a priori conceptions of those experiences” As Sandelowski  (1986)  (Sandelowski,  1986, p.  30).  states, unlike quantitative research  whereby “truth is research—defined,” qualitative methodology emphasizes truth as “subject-orientated.”  Truthworthiness in  qualitative research then is measured according to the criteria of credibility, applicability, dependability,  and  confirmability. Credibility Increasing the probability of credibility in qualitative research involves two tasks: the process of inquiry and the integrity of the findings.  The process of inquiry refers to  the methods and procedures employed to gather information regarding participants’ experiences in such a way as to increase “the probability that credible findings will be produced” (1985)  (Lincoln & Cuba,  1985, p.  307).  Lincoln and Cuba  state that one way of increasing the credibility is  through prolonged engagement, which is the “investment of sufficient time to achieve certain purposes”  (p.  307)  such as  developing trust, clarifying ambiguous or incorrect information,  and generally providing “scope” to the phenomena  being investigated. During each of the interviews, participants of this study  47 were given as much time as they required to articulate their experiences raising a child with a disability.  The interview  guide utilized open-ended questions that provided minimal restrictions when eliciting parents’ experiences, and each question attempted to trigger parents’ descriptions as to their experience raising a disabled child at various points during their life.  During these interviews, parents provided  a rich and vivid account of their experiences as mom or dad to a child with a disability,  and each of their stories allowed  the researcher to probe a broad range of issues related to their experience affects of,  —  e.g.,  interactions with professionals;  and tasks involved with,  caregiving; and critical  concerns and feelings at various points over time. One threat to credibility, as presented by Sandelowski (1986),  occurs when the researcher becomes enmeshed with  participants to the extent that it becomes difficult to separate the researcher’s experience with that of the participant. “going native”  Sandelowski (p.  30)  (1986)  suggests the possibility of  can be offset by  delineating the way  the “researcher influenced and was influenced” participants.  (p.  30)  by the  The researcher’s attention to subjectivity was  attended to by the ongoing process of journaling during the phase of interviewing, analysis.  and bracketing during the phase of data  The process of journaling was done after each  interview and at various points during methodological decision-making.  As Lincoln and Guba (1985)  state,  journaling  48 is a way for the investigator to record information about self -  “data about the human instrument”  of research inquiry  —  (p.  327)  -  and the method  “information about methodological  decisions 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 and elements in the situation that are most relevant to the problem or issue being pursued and focusing... detail”  (p.  304).  on them in  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 the researcher drawing conclusions too early.  Therefore,  interviewing parents several times provided the opportunity for an in—depth exploration of their experiences, and an opportunity for the researcher to challenge preliminary concepts and themes which emerged early in the process of data collection. The second interview,  in particular,  allowed the  researcher to clarify information, check assumptions,  and  expand on details presented during the first interview.  As  well, the second interview provided parents with an opportunity to discuss additional information that they may not have remembered to share during the first interview.  With  the exception of one mother who participated in this study,  49 all parents disclosed stories about their child as well as feelings and experiences as his/her parent that reiterated themes they had presented during the first interview, thus suggesting that no new information was emerging and premature closure was not occurring.  During her second interview, this  one mother, however, did add some new information about her experience that had not been discussed during the first interview.  The second interview allowed for an in—depth  discussion about her experience to the point that the researcher felt no new information was emerging. When attempting to increase the probability that the research findings are credible, by Lincoln and Guba employed.  and Sandelowski  This involves testing the “data,  categories, Guba,  (1985)  “member checks,” as discussed (1986),  analytic  interpretations, and conclusions”  1985, p.  can be  (Lincoln and  314) with the members of the group from which  the original data was collected.  Lincoln and Guba  (1985)  state: If the investigator is to be able to purport that his or her reconstructions are recognizable to audience members as adequate representations of their own (and multiple) realities, it is essential that they be given the opportunity to react to them (p. 314). At the end of the second interview,  once parents had an  opportunity to clarify and expand on information previously provided,  the researcher presented to three parents an  explanation of the preliminary conceptual framework derived from the analyzed data.  All three participants felt the  50 conceptual framework (as presented in Chapter Four) represented their experience as a parent to a child with a disability.  One mother repeatedly confirmed her  identification with the themes and concepts presented by stating “yes” to each of the interpretations offered.  One  father commented that not only did it represent his experience, but he felt it would also describe the experience of others he knew.  As well, the third participant felt it  also described her experience and stated she could not add anything else to it. According to Sandelowski  (1986), results are considered  credible when: presents such faithful descriptions or • . . it interpretations of a human experience that the people having the experience would immediately recognize from those descriptions or interpretations as their own (p. 30). As previously mentioned, the measurement tool was pre tested in order to increase credibility of the interview guide.  As well, audiotaping was used to increase the accuracy  of data collected,  and the interviews were conducted only by  the researcher. The process of “peer debriefing”  (Lincoln & Guba,  1985)  by  the researcher was also undertaken and involved “exposing oneself to a disinterested peer.  .  .  for the purpose of exploring  aspects of the inquiry that might otherwise remain only implicit within the inquirer’s mind”  (p.  308).  Various  aspects of this study were presented to several different  51 “experienced protagonist[s]”  (p.  308)  as a means of making  explicit methodological decisions and researcher’s biases, and as a means of clarifying interpretations and findings.  Peer  debriefing was done with a social worker who has extensive experience working with parents of children with disabilities, and with two additional social workers experienced in qualitative/ phenomenological inquiry.  As well, since  phenomenological research is emergent, peer debriefing offered the researcher the opportunity for catharsis,  “thereby  clearing the mind of emotions and feelings that may be clouding good judgment or preventing emergence of sensible next steps”  (p.  308).  Applicability In qualitative research, generalizability of findings is discussed in terms of “applicability”  -  the degree to which  the findings can be transferred from one context to another. “Representativeness”  —  a related concept often referring to  the method of sampling in quantitative studies  -  typically  “refers to the data rather than to the subjects or settings” (Sandelowski, (1985),  1986, p.  32).  According to Lincoln and Guba  the responsibility of the qualitative researcher lies  in her ability to provide a “thick description” of the context and time in which the findings were found in order for the reader to make a judgement as to the transferability of conclusions from one context to another.  Sandelowski  (1896)  states that the applicability of findings can be evaluated by  52 the criterion of “fittingness”  -  i.e., the ability of the  findings to “fit” another context, to represent the experience of the participants with integrity,  and to be recognizable to  its audience. a study meets the criterion of fittingness when findings can “fit” into contexts outside the study situation and when its audience views its findings as meaningful and applicable in terms of their own experience. In addition, the findings of the study, whether in the form of description, explanation, or theory, “fit” the data from which they are derived. The findings are grounded in the life experiences studied and reflect their typical and atypical comments (p.32). Applicability of findings was increased by the researcher’s careful attention to representation of the data. Both typical and atypical experiences were noted and themes derived from data obtained were supported by verbatim quotes from transcripts. Dependability and Confirmability Dependability and confirmability refer to the reliability of the research findings and are established in qualitative research through a clear audit or “decision trail” (Sandelowski,  1986)  beginning to end.  outlining the steps of the study from This study provided such a decision trail  whereby 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 and reflective notes provided the records for the audit trail,  53 which address the criterion of confirmability and dependability of the research findings.  Summary The purpose of this phenomenological study was to discover and describe the totality of aging parents’ experiences caring for their child with a disability in order to elicit the meaning of a lifetime of caring and facilitate a wholistic understanding of what that experience has been for parents. Through Giorgi’s phenomenological method of data analysis, as cited in Omery (1983), as well as careful attention to the criterion of truthworthiness of the research methodology e.g., credibility, confirmability  -  —  applicability, dependability and  the findings of this study reflect the  experience of five aging parents raising a son/daughter with a diability as it was ‘lived and perceived’ by the participants (Sandelowski,  1986).  The findings of this study will be  presented in Chapter Four.  54 CHAPTER 4 Presentation and Discussion of the Findings  Introduction The goal of this study was to describe aging parents’ experience raising a son/daughter with a disability.  The  parents who participated in this study were Caucasian from middle—class, professional backgrounds.  As such, both the  small sample size and parents’ homogenous background have placed restrictions on the generalizability of this study. Nonetheless, parents’ vivid accounts of their experiences of a lifetime of caring for their child with a disability both support previous research and provide important insights not previously identified by the literature. Although each parent’s experience was unique, common themes have emerged from participants’  several  . 3 interviews  These themes have provided the conceptual framework from which the experience of aging parents has been discussed.  From  parents’ accounts of their experience caring for an adult  Data analysis occurred from the transcribed interviews with parents. Some themes which emerged were not included in the conceptual framework, such as parents’ discussion of the effect their handicapped child had on his/her siblings. This theme was not included because it represented parents’ perceptions of the effect on other children not the direct accounts from the siblings. In addition, parents briefly talked about their relationship with their spouse, however, as a result of limited time, no in—depth inquiry was undertaken to better understand the effects of raising a child with a disability on the marital relationship. Both themes would be important areas to explore in future studies.  55 child with a disability, three phases were identified.  These  phases, however, represent a nonlinear process by which parents appear to embark as they adjust to their child’s disability and care for him/her over a lifetime.  Each phase  has been identified as a “Phase of Adjustment” in order to conceptualize their experience as a process embodying a journey of acceptance that has no absolute finality. addition,  In  there are no clear markers which represent the  transition from one phase to another.  Parents’ descriptions  of their experience was conceptualized from an in—depth analysis of tape—recorded interviews.  These interviews  indicated that parents experienced a slow, gradual movement through various phases of adjustment that represents a continuous adjustment to and acceptance of the child with a disability and the ways in which that disability affects parents. Acceptance is a thread  running through each phase of  parents’ experience; however,  it should not be understood in  terms of the dictionary definition to mean parents’ ability “to receive with favour, willingness, Wagnalls,  1976, p.  8)  or consent”  their child’s disability.  (Funk & Frequently,  acceptance is used in the literature to mean a final stage of coming to terms with loss and grief, disability.  including that of  Featherstone (1980) points out, however, that  acceptance is much more complex and never final.  As the  parents in this study recounted their experience,  acceptance  56 emerged as an important theme and appeared to portray the in— depth meaning they gave their son/daughter’s disability as meaning that disability has for themselves and  well as the  their life over time.  Parents described times of accepting  their child’s handicap, coming to terms with their role as parents to a disabled child, and spoke profoundly about the value that this experience has had in their lives. The term adjustment was chosen as a way of conceptualizing the process of coping with the stress of caring for a child with a disability.  Benner and Wrubel (1989)  define stress as  “the experience of the disruption of meanings, and smooth functioning”  (p.  62).  understandings,  The term coping was not used  to describe the ways in which parents dealt with “the disruption”  because coping often denotes a mechanistic  perspective whereby people are seen as purely rational individuals standing external to events and consciously developing strategies to manage stress. (1989)  Benner and Wrubel  state:  ...co-ping strategies are seldom developed in a purely deliberative and conscious manner. People may have very little access to or understanding of the coping practises. The practises they evolved to manage systems may have become their way of being in the world and understanding of themselves (p. 23-24). Adjustment,  on the other hand, denotes a shift, modification  or transformation in the way parents constitute and are constituted by (Benner & Wrubel,  1989)  the experience of  raising a son/daughter with a disability. In the “First Phase of Adjustment” parents began to  57 realize their child had a disability.  Parents recounted  strong emotions and described enormous caregiving demands. This period encompassed the initial encounter with professionals and the search for a diagnosis and/or an understanding of their child’s disability. The “Second Phase of Adjustment”  represented the  “Parents’ Mission” to develop their child’s abilities and skills to the fullest.  “Parents’ Mission” included their  ongoing efforts to find appropriate formal supports and programs,  as well as their struggle to manage the day—to—day  care 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 present living situation, prevailed.  a sense of uncertainty as to his/her future  As parents’ faced the realities of this  uncertainty, they begin a process of planning for the future care of their adult son/daughter.  This process included a  time of ‘preparing to let go’ where concrete plans were developed in order to provide a continuation of parents’ values and goals regarding the quality of their adult child’s life and the ongoing monitoring of his/her care once the parents die.  This phase also included parents’ reflections on  the choices they have made and involved contemplating the meaning of their lives as it has been lived.  This account of  their experience has been conceptualized as the “Existential  58 Meaning of the Experience” and provides a vivid description as to the meaning parents have given their lifetime of caring. In this chapter, parents’ experience is described according to these three Phases of Adjustment.  Within each  phase several common themes have emerged and together have provided the framework that was used to represent the experiences of aging parents caring for a son/daughter with a disability.  The quotes used were taken from the data  collected through interviews with parents and pseudonyms were used to ensure confidentiality of the participants.  First Phase of Adiustment: Initial Realization of the Disability During the “First Phase of Adjustment” parents either learned about their child’s disability or began to suspect he/she had a problem. as blame, guilt,  Parents recounted strong emotions such  loss and shock.  Several mothers indicated a  sense of self—blame while the fathers’ experiences were characterized by “shock”.  Both mothers and one of the fathers  longed for answers regarding the diagnosis of their child’s disability in order to help direct their efforts towards taking care of their child.  One mother stated that “mostly  you want a diagnosis so you know what to do.”  Another mother  recounted that early on in her son’s life there came a time when she searched “the library and got every book I could.  59 I’m going to do what I can.”  This phase will be discussed  according to several key themes which emerged. The Parents’ Resionse “What have I done?”  While parents became aware of their  child’s disability at different times, many strong emotions were expressed.  Mothers recounted similar feelings as they  learned “something was wrong.”  One mother, whose child was  born mentally handicapped, recalled feelings of guilt and loss as she first learned of her child’s disability. Alice: think, oh yes. . .yea... 1 4 Definitely guilt. “What have I done?” No question about that. Tremendous feeling of guilt about that. I really did feel maybe that there was something that I had done initially. And there is a tremendous sense of loss... Although this mother had a diagnosis, the information she received offered no hope or direction.  Instead, the diagnosis  of 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, when you’re young and... I really thought, “I hope he doesn’t live,” you know. I didn’t know anything about so called Mongoloids, and what I did know  Abbreviation Key: All names used are pseudonyms to ensure confidentiality of participants: = Non—verbal of father or mother and omissions to [] preserve confidentiality  ()  =  Researcher  60 live. If that was the case, a Mongoloid, I hoped he wouldn’t live. But that was just a quick reaction. Then the doctors... Kevin (pseudonym) did have a severe heart condition and we were told that he wouldn’t live the year out. And eventually they said that he wouldn’t live until adulthood and now he’s 32 years old you know [laughing]. So its absolutely amazing, but as the cardiologist said they didn’t know enough then... Another mother, whose child “seemed quite ordinary to begin with” and later, at the age of two, began to realize “there was a problem,” described feeling alone as she discovered her child had a disability. There is this terrible feeling though when you Anne: discover you have something like that you feel very much alone. The aloneness of it is quite overwhelming. It’s amazing how alone [emphasis added] you can feel when there is a problem you don’t really understand. .  .  For this mother, the discovery of her child’s disability was also accompanied by worry and concern.  As well,  she felt she  “had done something wrong” and somehow hoped that a discovery of what she had done wrong would provide direction for how she could help her daughter. Anne: I felt that I had done something wrong and I said, “well, if I hadn’t done something wrong how can I do something right to help her?” For another mother, however, her initial concern that her child may have a disability occurred gradually over many months so “by the time we were told I already had a lot of time thinking, this mother,  “I think she does have [something wrong].”  the realization of her daughter’s disability  “really wasn’t so much of a shock.”  For  61 Barb: . . .because she was three months premature, it was the first hint. As I said she was Cesarean, she was terribly spastic and.. . then when the eyes wandered, all the things that I told you. By the time they actually got down to the nitty gritty.. No, I was prepared for that...But no, it wasn’t the shock I think I sort of gradually got used to it. . . . and I never went through this what a lot of mothers have told me that they did. Like crying and why me? I never thought that...I mean I can have a handicapped child just like anybody else. While the initial realization of her daughter’s disability was not a shock to this mother, what was “hard to accept” was not knowing what the diagnosis of Cerebral Palsy really meant. Having a diagnosis that didn’t “tell you what you can expect or what they [the child] will do” was the most difficult for this mother during the initial stage of discovering her child’s disability. Barb: And I realized that wow, Cerebral Palsy can go from here to here. . . They gave us a ball park and that was hard to accept. I mean it was something you would like to know exactly then you can attend to it and so forth but not knowing anything what to expect in any way shape or form was hard. But once I started doing therapy [with her] each little area became.. .well I had then knowledge of. . . and it became obvious that if we were going to sit up by ourselves it was going to be with difficulty and I couldn’t see that she would ever actually sit, get into that position on her own and with each physical development it...with doing the therapy myself...I could see what we weren’t going to do or the odds are we weren’t going to do. -  A father’s account of his experience, however,  strongly  emphasized that there should be no blame placed on anyone; he stated: Al: And the other thing is that there is no blame attached to the situation and society will always try to find a blame and there is no blame attached.  62 There is no fault... don’t try to blame it on one thing or another thing or another thing it people can’t function well ...  Instead, this father recalled feeling “shock” and he focused his attention on finding ways to deal with the situation. It was a shock. Al: What do you do? And so we had to devise ways of working and mostly it involved simply doing whatever we could to keep the situation as good for the other two girls and good for Sandra as we could. Another father commented that “It was pretty. me.  .  .  stunning to  I just wasn’t, you know, really prepared for it.”  However,  “the real shock was.  .  .the word Cerebral Palsy, which  I really didn’t know what they meant.”  For this father, his  feelings of fear and anxiety were the result of not knowing what the “implications” of his daughter’s diagnosis were, and like many of the other parents,  “read[ing] up on it” was an  important step in having “things fall into place.” Henry: And of course once the word Cerebral Palsy came up, well we went to the library and started reading what Cerebral Palsy was and how it occurs and then a lot of things fell into place. So, no there would be no reasons to doubt anymore. The process of searching for a diagnosis by one mother and father,  led to an additional experience of pain as  professionals suggested the responsibility for their child’s disability lay within the marital relationship and possibility resulting from some form of abuse. Anne: So we went to the speech and hearing clinic to have her assessed. And of course, there was no easy diagnosis either. They sort of... when there’s delayed speech they have to check everything besides, maybe the mother’s an alcoholic or maybe the father has got... or is a drunk or maybe there’s something  63 in the relationship that this child is being severely neglected. This is the process you have to go through which is very painful. You know, you are worried tremendously about your child and they do have to eliminate these things. It is necessary. And I can see that now. But at the time I could have done without that experience. And I remember one thing particularly and that Al: was... Anne took her to the hospital one day and then when I came home there was this sort of feeling, “Have you been harming this kid, have you been hitting her behind my back? [laughing] Or have you been speaking roughly to her.” Oh I don’t know what because the doctor you know I guess they deal with people who abuse children and they wanted to be absolutely sure there was no abuse. And so she asked me [laughing] you know, and uh, we really sat down and we talked about it we said “All right, we deal with complete honesty and there’s no way, its you and I against the world as far as that’s concerned. We know that we were doing what we were doing and what we were doing is open between us. And there’s no question of doing anything behind one another’ s back. When these doctors come at us and we’ll go at them honestly but that was one of the big things that happened and then... I guess the question of what you do with it began to filter in. While these parents accepted that it was necessary for professionals to scrutinize their home life in order to eliminate all possible causes for their child’s disability, both parents emphasized how painful and difficult this process was for them.  These parents recalled this experience several  times during the interview.  In addition to the process of  discovering and understanding their child’s disability, the extra care required by these children placed enormous demands on parents.  64 Excessive Caregiving Demands Parents described the excessive caregiving demands that began early in their child’s life.  One mother described her  daughter as being “legally blind [and having] physical problems.”  a whole raft of  Her daughter’s bouts of pneumonia  occurring “four times every winter regular as clockwork,” as well as her asthma, bronchitis and chronic spasticity, all contributed to two years of sleepless nights, and a great deal of physical and emotional exhaustion. Barb: Over the early years of Mary’s life, it was twenty four hour care... You are going like eighteen hours a day. . . the first two years she never slept. . . never slept through the night. I can remember up to the first year that I stayed up until around one or two with her and she would go off to sleep then, and I don’t know when she woke up. I think it was five or five thirty but Henry had gone to bed. He was holding down a job so we had to cope with that. He had to earn money, but he got up at the five thing and looked after her and got his breakfast and got ready, etc., and then woke me up...I mean every time this kid went to sleep she’d get spastic and wake up... In one instance, this mother recalled the devastating experience of thinking her daughter could very likely die. Barb: . . . she had pneumonia when she was two. Not the first time but this time it was really bad and my pediatrition was really a neat guy. He would phone me every day to get a report. . .he would phone and I guess he gave me enough credibility to realize that I wasn’t stupid and I could tell him and I knew things were worse than they normally are and I used to the kid was on that chesterfield with the steamer going ... God in heavens its no wonder the walls didn’t peel I had so much steam going and tenting her and that. Anyhow, she was really bad and we ended up... I phoned him on a Saturday morning and said that she’s not good, I’m bringing her in. And he checked her in  65 and said that she’s not going to make it. ... And he said... she’s going to have to go in the hospital. He said, “I think she should go in,” and I said I don’t want her to go in and he said, “where do you want her to die, at home or in the hospital and if she dies at home are you going to feel guilty?” And I said, “yes.” And he said, “well she’s got to go So that... I mean that just absolutely in.” destroyed us... For another mother, taking care of her disabled child meant tending to his “health problems that were so severe”  —  health problems which resulted in frequent trips to the emergency room and very little sleep. Alice: health problems that were so severe. . . .the We had an old car and I was so afraid that it would break down because I can’t tell how many times in the first two or three years that I had to take Kevin to the emergency. He would spike a temperature to 103 just like that where he could turn around and be fine. You know you would be sponging him down and then taking him... I was so busy... I had to work but I wasn’t working the first two or three years. No, I didn’t go back to work until he was five. I just couldn’t. So I wasn’t working then but there seemed to be a lot of stress. Two other kids and I was bound and determined I was going to spend a certain amount of time with Karen every day because there was no question that Kevin took a tremendous, tremendous amount of time for two reasons. Mostly because of his health, not because of being Down Syndrome. But I also worked with him a lot. For this mother,  accommodating the severe health care  needs of her disabled child while also “working with him a lot,” dealing with a difficult marriage, and trying to meet the needs of other children, resulted in so much pressure that she had a “breakdown.” process of acceptance.  At this point this mother began the  66 The Process of Acceptance Begins During the first phase of adjustment, parents recounted a time when the process of acceptance began.  Parents indicated  that accepting their child’s disability “initially [took] long time”.  a  For one mother, the stress and pressure of trying  to be “super mom” by caring for her son’s severe medical problems while also addressing the needs of her other children and facing the demands and challenges of an unhappy marriage, caused her to have a “breakdown” when her son was one year old.  It was at this time that she began to accept her own  limitations 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 or breath heavily I was up like a shot. It really was a terrible year. And I’m not surprised I had sort of a breakdown at the end. I had to come to grips with the fact that you can only do so much, so much that a human being can do. Do your best and... I was trying to be a super mom, super mom to all of them. For another mother, the lack of a clear diagnosis extended her hope for a “breakthrough”.  She longed for an answer as to  what was wrong with her child: Anne: They were putting rockets to the moon. They put a man on the moon but they still couldn’t tell me what was wrong with my child. I thought that money would be better invested in something else than just sending people to the moon. That was a very personal feeling though. However, when she was able to find “something to do,” she too began the slow process of accepting her child’s disability. Anne: I guess the thing that I learned early on that sort of meant the most.... at first its overwhelming and very frightening. But the thing that you have to find is something to do. You have to attack your  67 problem and it doesn’t really matter if you are attacking it the wrong way. If you have the feeling that 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 you feel you are actually doing something about it and working with it. And not just feel that you are unfortunate and you’ve been victimized. -  That was very critical because until I found some way to go at the problem and work with it in some way it was very hard and very frightening. That was the important thing I think. That you feel you are on some kind of positive course. And I think even if you are making mistakes its better to be doing something 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 her begin the process of acceptance. The first phase of adjustment appeared to encompass the first year or two after the child’s disability was discovered, while the second phase began when parents were able to move from their initial emotional response to a mode of action.  Second Phase of Adiustment: Parents’ Mission Being a parent of a child with a disability meant mothers and fathers continued to respond to enormous caregiving demands and assume multiple roles in an effort to both manage the day—to—day challenges as well as search for ways to help their children develop their abilities and reach their potential.  Whether parents were searching for appropriate  68 educational programs, trying to locate knowledgable professionals, making decisions about necessary medical interventions, or investigating possible assistive devices, the comment of one father reflects parents’ passion and commitment during this phase:  “...we felt we had to do them  because there was hope there that we could accomplish something.”  A mother stated that “we’ve got to give her every  chance and if that will do it then, you know, [to the hospital].”  she had to go  This phase lasted throughout the years  that parents raised their children, which for parents of a child with a disability, often meant providing care well into the child’s adult years. Extensive Caregiving Demands: Managing Day-To-Day The extensive caretaking demands, which began at the time parents realized their child had a disability, continued throughout this phase.  One mother described the stress and  pressure she felt over the years: Alice: One of the major concerns I have had over the years is his medical condition. He’s got ear problems, skin condition and he now... At one time he had a lot of pneumonia when he was a child. A small child until the age of five or six. He was in and out of hospital all the time. And that was a tremendous amount of pressure. One time he just, they didn’t know if he was going to make it... A father described his life as having to “carry out a very careful routine everyday and. day to day, week to week”.  .  .  that routine was unvaried from  He also commented that if that  routine was changed it was often a “catastrophe.”  The  routines and health care needs of their disabled children,  69 required a great deal of time and offered little ‘time out’ as this parent so aptly described: Al: I had to come home from [work] regularly at 4:00 and even if I had to work later on when Sandra went to sleep and that kind of thing. . .that’s the way it was. [laughing] (Sounds like a lot of work.) It was. It began then... we didn’t really do anything but bring her up. We never got out much. We couldn’t seem to leave Sandra home with anybody. I’m sure she wouldn’t have understood that so... we just brought them up. And I guess that lasted for, I don’t know, for years [laughing]...a long time. During her daughter’s adolescence, another mother discussed her attempts to help her daughter spend time with friends and recounted how “tiring” it was to care for their physical needs. Barb: I had some of her friends come and they spent the weekend. God, that was tiring. Believe you me, you start trying to bathroom three kids, two teenagers and they’re big by that point and dress them and sometimes feed and sometimes they would feed themselves. But anyhow, they would come and spend the weekend because that seemed a good idea for Nary to have these friends. Parents spent most of their time and energy raising their children and struggling day-to-day to meet the needs of their disabled child while also tending to the needs of their other children.  This was also accompanied by a concerted effort to  find appropriate professional and formal programs that helped them develop their child’s abilities.  Such efforts left  little time for anything else and isolation characterized parents’  life during this time.  70 The Mission:  Parents’ Search for Help  Parents’ search for help was an attempt to find ways of developing their disabled child’s potential to its fullest. This became their mission or primary ambition as they raised their child with a disability while also tending to the needs of their other children.  One father stated that he and his  wife were “by ourselves a lot. our own thing.  We ran our own lives and did  It was simply a matter of keeping things going  and doing them.” this together” as  For this father, his aim was “keeping all 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 to  feel that I was doing something positive.”  Another mother  talked about her goal for her child in this way: Alice: If anybody’s reached their potential, then has Kevin done it, as far as I’m concerned. But that’s been my aim for Kevin. To help him be that way. This mother recounted numerous stories highlighting her son’s “independence” of which she was proud. During this phase mothers and fathers recounted their experience in ways that highlighted their primary job: parenthood.  In addition,  for most parents, there was an  indication that they felt they had succeeded in their careers as parents,  since their children had developed skills  necessary to live their lives as independently as possible. For those parents who felt success in their role as parent,  71 such feelings represented an even greater sense of accomplishment in light of the limited and/or lack of formal support.  Several parents, however, had felt that their child  had not become independent and “self—reliant”. parents,  For these  the struggle to accept what they had or had not been  able to accomplish as parents to their daughter continued; one mother expressed a persistent and prevailing sense of grief as a result of her daughter not living a “full life.” Formal supports:  “No choices”.  The context in which  parents raised their child was one where little formal supports existed to either temporarily relieve parents of their caregiving demands or provide appropriate programs to assist in their child’s development.  Whether it was  “ignorance” by professionals regarding “the community as to what facilities were available” or inequities in the system that meant “physically normal” children had services that children with disabilities did not have, parents struggled to raise their disabled son/daughter with few,  if any, choices.  One father stated that unlike “today” when “education of every child is a right.  We had to beg for Mary and.  it as any different than the other kids. the same] things...”  .  .1 didn’t see  They needed some [of  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 up more on things too but. . . you know, they didn’t have sufficient services for these kids and they needed them and they weren’t there and that’s frustrating... You can build a football field or a stadium for kids that can play football and these kids need to play  72 something too and yet there was nothing for them and right down the gambit. As they got older they needed electric typewriters and things like that. . . the equipment when we’d have school days with other kids at the high school and Mary was like back in the eighteenth century. You know, it still doesn’t make sense. For this father as he reflected on these years, amount of guilt feeling.  ..  “a certain  [that] you should be able to do  more” made it very difficult for him to feel good about his ability to care for his daughter. This same father also described the lack of physical therapy available to his daughter.  His comment revealed both  the limited formalized supports available for children with disabilities as well as parents’ hope that such formal services would assist their child in developing his/her greatest potential. Henry: . . .when she [his daughter] first started therapy she, you know, I think they had one therapist for over a hundred kids. . . in those days it was kind of just more or less giving lip service to the problem. And I don’t truthfully think she would be walking if she had more therapy. . . but, you know, there are other kids that had speech problems and they didn’t have a speech therapist or things like Well, its.... you. . . it wasn’t acceptable... that. One mother commented on the lack of both professional and informal advice to help parents know “what to be on the lookout for” as well as a lack of “homemaker service” to give parents some much needed, practical respite: Barb: There was also no homemaking service. There was nobody doing that for us. There was nobody coming in for two or three hours that can just do your housework or that you can go to your neighbour and have coffee because Mary would have wanted to go too and I’d have known that...You did it yourself...  73 Another mother described her family’s need for respite support and what it meant to her when a little help finally became available. Anne: One of the things that happens when you have a difficult child is you don’t get away from the child. Finding a babysitter can be very difficult so one of the things, a good thing, that came out this way that I was able to go get my haircut which was something that was kind of hard to do unless my husband babysat. And we couldn’t find a babysitter so we stayed home you know, for a long time until finally they... that was at the General Hospital too and they told us about these friendly aunts who would come and babysit these difficult kids and we did end up finding this woman 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 was very difficult for us to do these things. And I think they felt that our family was a little bit weird because we couldn’t take part in all the social games that other people did. (How did you feel about that?) Well, there wasn’t ... we did what we could... She continued by saying that when a respite program was available,  it allowed her and her husband to take their other  children on a vacation.  Her statement revealed how  “horrendous” some of the family holidays had been when trying to meet the needs of her disabled daughter while also caring for the other family members.  Respite allowed this mother to  provide a special time for her other children uninterrupted by the demands of her disabled child. Anne: . . . they had a [name of respite program] which was a hostel, a respite hostel so after she [the handicapped child] had been to school for a year we took the kids. . .to Europe, the two older girls... we  74 had some horrendous holidays like the one I was telling you about that were really very difficult and very trying for the girls so that was great. For another mother, the financial need to continue working, her lack of familial support and the limited or often nonexistent formal supports such as respite and after school programs, meant she felt she had no choice but to put her child in a group home at the age of nine.  She recounted the  experience 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 was suggested to me by the Association social worker and she was also a friend of mine. . . . they were still learning too because they didn’t have that many... it was the only children’s group home they had. And again that’s when I first started learning about how to work with staff because I was involved an awful lot. Yea I found that extremely hard; extremely And yet as I look back I don’t... I don’t see hard. that there was an alternative.., its not like they had other after school programs. And they did start not too long after that too... my husband wouldn’t allow someone to come into the home and... and there were no after school programs at that time. So the only way that I could tolerate that kind of situation with him in a group home so young was that I would think of him in terms of like the English do with their children that their children are in boarding school very young but then he was home every weekend. In contrast with today’s climate of women working outside the home,  one mother recalled having no other choice but to be  “a stay—at—home-mom.”  She too recounted the totality of  caregiving and parenthood in this way: Anne: One of the things that’s sort of odd is working. You know women are supposed to work these days and I still get people who sort of say well, you ‘stay—at—home—moms’ [laughing]. There was no choice, staying at home. How could you find somebody to look after the situation?  75 With little choice of respite and childcare, and limited educational opportunities for their children, parents assumed many roles in the life of their child. Multiple Roles of Parents In parents’ search for appropriate programs to help their child develop his/her potential, parents adopted multiple roles.  In addition to being a mom or dad, parents also became  teachers, physical therapists, monitors of their child’s physical care and education, and became facilitators of information to professionals who knew very little about their child’s needs. Parents’ role as teacher. with her child,  one mother searched for ways to teach her  daughter to read. therapy,  In an effort to communicate  Although her daughter was receiving speech  continuation of professional support was uncertain  unless progress was seen:  “you are allowed 18 months of  therapy and if that doesn’t help then they cut you off there. That was what they did at the time.” So, I taught grade 1, when I taught, so she Anne: gave me a few ideas to work with and I used a few ideas of my own. We had the name ‘piano’ on the piano and the words on everything I could think of.... I used just about anything I could think of.... so she did learn to read. Her reading came along quite nicely. Not what you’d expect with an ordinary child, but still she can read quite well. Another mother spent an enormous amount of time teaching her son and the satisfaction she felt was obvious:  76 Alice: You know there were a lot of other Down Syndrome children that I knew that were able to do many more things than they [the other children] did, but Kevin, he would do them... Besides the enormous time parents dedicated to teaching their children, they also spent a great deal of energy doing “therapy, you know, kind...  like stretch[ing] cords and all that  I did that at least five days out of seven” all with  the hope that their child might learn to be more physically independent one day. Parents’ role as physical therapist.  Looking back,  one  mother recounted that her extensive involvement in performing consistent physical therapy for her daughter “didn’t accomplish anything” since she “still can’t walk. can’t wheel the manual wheelchair.”  She still  However, this mother’s  commitment to providing her daughter with every possible advantage in the hope that one day she would walk became evident as she recounted the following: Barb: . . .we were always short therapists and Mary would get it say once a month, well, I mean she should have had professional therapy at least once a week but mostly it should have been three times a week. Anyhow, I used to go to the school everyday, take her out of class for half an hour to do therapy with her, it was eleven thirty to twelve, feed her lunch because they needed feeders at that [school]...and then go home. I did that for a whole year and someone said to me, “well don’t you find that really breaks up your day?” Well, of course it breaks up your day. But I mean to me there wasn’t an alternative. She had to have therapy. This mother demonstrated the enormous commitment and dedication of parents to the development of their child’s  77 potential.  While parents demonstrated this commitment by  performing the role of physical therapist, they also adopted the 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 search for appropriate school programs and teachers that ‘would work with their child.’ Anne: There wasn’t the schooling that there is now and the choices. And there were years where we thought there would be nothing for her at all because they weren’t obliged to provide any kind of education and yet we were very fortunate something really good seemed to show up every year as we needed it... Parents considered various institutions in an effort to find an appropriate place for their child to learn and develop.  However, as they investigated the various  possibilities,  one mother commented on how “horrifying” the  alternatives were. Alice: And when Kevin was quite young I went out to [name of institution] school to see what [the] school was like and... at that time everyone was putting their name on the list because there were five, six hundred names on the waiting list. You just automatically put your name on the list. And I went out to see what it was like. And I’ll say I was pretty horrified to see what I saw... Anne: I can remember remarks being passed that I didn’t appreciate. I think they assumed that I should have put her in an institution but that was the common thinking at the time and I remember what Al’s niece said once, “Oh, we all admire you so much for keeping Sandra.” And I said, “Oh, I didn’t know I had a choice.” And I guess there were places I could have put her. But none of them were very appealing.  78 Al: ... we have thought... for the sake of the other girls that perhaps Sandra should be taken to a residential setting earlier so that the girls would have more chances to have their own social life at home, but every time we thought about that and the possibilities of it and the possible outcomes of it, it wasn’t worth it. We went to [name of American city] one year to see a situation down there... that was supposed to be really great [laughing]. . . .then the whole thought of leaving her in that foreign place and coming back here... it just wouldn’t work. We couldn’t do it. So we just didn’t have any way of, any other way of dealing with the situation. I guess there was a residential situation in [name of city in B.C.], but there again.., all it does is take people out of situations that were horrible and put them into something that was slightly less horrible, probably. But Sandra was in a good situation here. There was no reason what so ever to move her. Another mother commented that for her,  she could never  consider putting her daughter in an institution.  This mother  felt strongly that her daughter “would never be challenged, stimulated and she would have died of pneumonia because that’s the only thing that...got [her]  over pneumonia.. .because she’d  at least had lung expansion” as a result of this mother providing her daughter with the appropriate exercises.  It was  these exercises “that kept her alive.” Barb: I couldn’t have done it to her. She had two strikes against her. I just could not in any way shape or form put her in [name of institution]. I’d have died. I would. One mother remarked that “things are always happening and they always will.”  Therefore, her role as monitor meant  finding ways to work with the staff in his group home to be sure her son was well cared for. Alice: ...it’s not easy to do a good monitoring job if you don’t live in the home. You have to pick on  79 every cue. You have to always be reminding. You have to do it in a positive way so that you get the right kind of action and there is always new staff. And I always sort of groan, “One more new staff to train.” [laughing] And that’s about where its at you know and I keep trying to get across to them... Parents’ role as monitor was an aspect of caregiving that remained constant throughout this phase of adjustment extending well into the child’s adult years.  As will be  discussed during the third phase of adjustment, this role as caregiver never ended. Speaking about the segregated school program that was available for her mentally handicapped son, recounted:  one mother  “I don’t know what it was, but he didn’t seem to  fit into the school that well. teachers] were,  In some ways they [the  in my opinion, quite punitive like.”  Parents  frequently talked about the “fit” of programs and the importance of teachers, professionals and programs that “look at your [emphasis added]  child”.  Anne: When they tried to fit her into different programs and find the help we want them to look at your [emphasis added] child. You don’t want her to be looked at as part of a category. So staying away from labels was very worthwhile. Autism... I found autism a very frightening term. And of course Sandra wasn’t all that frightening. But it seemed like a threat at the time... Assuming the role of monitor meant parents had to skilfully negotiate the domain of professionals in order to secure the services their child needed.  At times the  restrictions inherent in the arena of formalized programs and supports worked to some parents’ advantage.  The label used to  80 identify the child’s disability often served as a gatekeeper to various programs, as one mother’s statement revealed. Anne: .. .mostly you want a diagnosis so you know what to do. Not because you need a label and eventually you begin to realize that a label is a very dangerous thing. And... if she’d been autistic lots of people said, “well we can’t do anything for autistic children”.., so therefore to my advantage that she wasn’t autistic. We went to a meeting last week and this fellow said, “ well if your child is autistic you can get a special aid, you get this, that and the other thing.” So its worth your while these days to say I have an autistic child because you will get lots of help, but that wasn’t the case when Sandra was young. However,  as was illustrated by a mother who felt she had no  choice but to put her son in a group home at the age of nine, the realities of inadequate and restrictive formal supports have proved to be a great disadvantage for many parents.  For  this reason, many older parents were pioneers in the development of programs and services that young families are presently able to access. son,  With no programs available for her  one mother had no alternative but to develop her own. Alice: I went to the Association and said, “What is there for three or four year olds. And they said if you want one start one yourself and I did. They gave me a list of names and I will never forget it because I had to phone these parents and some of them, their son or daughter had died, some of them were in [institution in B.C.]. Well I wasn’t adjusted to having a son like Kevin myself let alone dealing with something like that. The role of monitor was a consistent theme for parents and  one that reflected their caregiving responsibilities in the past and the present, and eventually would become a significant aspect in parents’ future planning for their adult  81 child with a disability..  In addition, parents’ role as  facilitator of information to professionals constituted another role performed by parents during this second phase of adjustment. Parent’s role as facilitator of information to professionals.  Parents frequently were involved with  professionals who knew very little about their child’s disability, what his/her needs were or where appropriate programs could be found to help their child.  This meant  mothers and fathers assumed a great deal of the responsibility to both find information and educate professionals.. Anne: I was in invited. .. . by [name of doctor] to the Mental Health Centre, and he just come in so he gave a speech. He talked about the things that there were for delayed development and mentioned the Speech and Hearing Clinic at the General Hospital and so I went to the doctor and told him I wanted her to go. And of course I had to provide the details and tell him how to go about it. Because I needed a doctor’s referral. And that’s the way it was mostly all the way along because the doctors don’t. They look at physical conditions and ... these other things are a whole different field. One mother recounted how important it was for her to have an “umbilical cord so that you have access to whatever help there is” and a father talked about the value of having a contact in the school system “behind the scenes” who “knew what was happening.” Anne: To know in fact that I did go places that the only help that I got with this particular place, actually it was the Mental Health Centre, was if they did make some breakthrough and learned something about the problem I’d been in a position to hear and I guess I sort of tried to put myself, all the way through her upbringing and even now, somewhere where  82 you can get... be aware of what’s happening in the field or in the medical... Al: Anyway, the school board was very, very supportive there keeping her in that class and I guess some of it had to do with I used to go over to the school board office and bug the director of special services every once in a while to try and find out from him what he thought we could do. That was the only person in [name of city], and he did a good job. He was behind the scenes. He knew what was happening and kind of assured me that he knew what was happening, and he helped an awful 1t. The role of facilitator added additional pressure for parents since they were often unable to rely on professionals to offer them complete or accurate information on services available for their child.  For these parents the statement by  one mother aptly described their role as facilitator:  “You  have to educate him [the doctor] as you go.” The Process of Acceptance Continues The second phase of adjustment also included the continuation of parents’ process of acceptance.  As parents  continued to modify their life around the needs of their son/daughter with a disability, they demonstrated a wholistic perspective to their child and his/her place in the family. In addition, parents found it helpful when professionals also adopted this wholistic perspective.  This perspective  signified an integrative outlook parents had toward their child and represented a view of him/her as an individual with both strengths and limitations contributing to the family in unique ways.  Parents recounted experiences where the child  with a disability was normalized or included in family  83 functions, routines and celebrations, and where professionals also discussed the child’s needs and behaviours in ways that normalized the experience for parents. Several aspects of this wholistic perspective have been presented as an important theme to emerge from parents’ experience.  In addition, this perspective has also been  conceptualized as a transition for parents from the day—to—day struggles of raising a child with a disability to that of greater acceptance of the child with a disability. Parent’s wholistic perspective:  a bridge to acceptance.  In numerous ways, parents recounted experiences that demonstrated how their disabled son/daughter was integrated into the family.  One mother described the time when her  daughter was admitted to the hospital and the “experts” suggested the family not visit for several weeks in order for the daughter “to get adjusted.”  A social worker also  suggested the rest of the family take this opportunity for respite by going on “a holiday.”  For this mother, who  believed strongly that “if ever kids need parents its when they are in the hospital,” there was no way she could imagine any member of her family enjoying a vacation without her daughter, Mary. Barb: . . . different ones at [name of hospital] would say, “wouldn’t you be smart to go away now to have a holiday?” Holiday? Are you out of your mind? How could we go away? How could you have a holiday, one of your kids are missing? They never understood that. . . Our kids couldn’t have done it, never mind if we could have, the kids couldn’t have left her, you know. —  84 In spite of the caregiving demands placed on parents as a result of their son/daughter’s disability, parents described many incidences where “we did all the same things that every family does” and the child’s needs were integrated into the normal routines and celebrations of the family. But we did all the same things that every Alice: family does. We did a lot of camping. He loved I think people are surprised today when I camping. go to take them camping because Kevin knows what to do because that’s what we did. We couldn’t afford to do anything else. We did a fair bit of camping, we Again we always had to watch Kevin because loved it. we thought we were going to lose him. He was just going to go if we weren’t careful. He is just interested in everything. I think his birthdays were very important and... I think one year it was his sister’s birthday and so we... Kevin was to carry birthday cake. I’ll never forget this. He started to carry it and the cake fell over on the floor like that so we just picked it up, took it back into the kitchen, wiped the floor, wiped the pan, put the candles back in, back out he again [laughing]. went It is funny the little things you remember... He just wanted to do those things so well. I, why shouldn’t we let him...  Al: We did a lot of travelling. We used to take ourselves and go... Anne’s brother lived at [name of American university], you know, down in [name of American city], so in spring break we would take up and go down there, driving the car. Well, when you’ve got two normal children, normally husky and healthy and frisky and Sandra herself is normally husky... but Sandra doesn’t know what is happening unless you write it down. We would say, O.K. Sandra this is what we are going to do. We are going to drive, we are going to have breakfast at such and such a place. We are going to drive and have coffee at such and such a place and drive and have lunch at such and such a place and drive and go to a motel... at such and such a place.  85 Parents also described times when professionals reframed their child’s behaviour in ways that normalized the child and placed his/her behaviour in a context that helped parents understand and accept the behaviour more easily.  One mother,  when her child would be “crying and howling” in public,  felt  the behaviour to be “quite humiliating,” and initially interpreted this situation to be a reflection of her ability to parent.  However, when a professional normalized her  daughter’s behaviour in light of the very real physical limitations of her disability, this mother began to see her daughter’s acting out in ways other than her own success or failure as a parent.  As she pointed out,  “its good to get  that from a professional that did help.” One of the things I guess the psychiatrist Anne: said that was helpful was, she would throw temper tantrums so, or get upset and this is quite humiliating in public to have this child crying and howling and you feel quite guilty about it. He said well, in her case this is not a temper tantrum. This is a catastrophic reaction because you know when she was upset she was really upset, and beside herself and beyond herself even. So that was very helpful to sort of have this idea that this was not just a temper tantrum. ... You were supposed to punish the kid for temper tantrums, and it didn’t seem right to do it either because she was obviously upset. And she didn’t do it for with her eye coldly on gain because things were overwhelming for her so its good to get that from a professional and that did help. For another mother, putting her son’s “criminal” antics into the context of normal behaviour for young boys, helped her “feel better” and not assume his behaviour reflected her ability to be a good parent. Alice:  He threw rocks at motorcycles.., up on [name  86 of street] at a Motorcycle shop. He threw rocks and the police were after him about that. He took a lunchbucket and put it threw somebody’s basement window. [laughing] The executive director of [name of “Association”], I was president at this time (mumble) .. . “You know, the only difference between Kevin and I when I was a boy was Kevin wasn’t smart enough not to get caught.” [laughing] So that made me feel better. So I guess some boys do those sorts of things. One mother recounted how much it meant to her when her “very kind..  .  and very understanding” pediatrician was  sensitive to the financial effect her daughter’s repeated illness had on the family. Barb: ...he knew financially we were just getting by always and she was always on an antibiotic and he would say, “I really hate to give this to you its quite an expensive one” and that and I’ve be thinking because I’d be worried, like it doesn’t matter. If she has to have it like. If he’d pulled out ten dollars and given it to me it wouldn’t have surprised me... This same doctor also demonstrated an understanding of the emotional impact caring for a severely ill child had on all members of the family. Barb: If you can possibly come in from two until the end of visiting hours it would be the best thing for her. And of course he knew we had three other kids. And he knew what he was asking. This was not going to be easy. As well, this same mother commented on the importance of professionals who demonstrated a wholistic perspective by “never talk[ing] down to” the child with a disability, thus respecting the child’s inherent worth and dignity as an individual. Barb: . . . he turned out to accept her and he thought she was great. He talked to her and over the years and they had a great relationship and he never, ever  87 talked down to her.. .He [the G.P.] never talked down to her. He asked her how she felt when she was sick and how do you feel, where does it hurt, and on and on and on. We were lucky in our, those two doctors were our pediatrician and our G.P. The value to parents when professionals held a belief in the intrinsic worth of their disabled child can be seen in this father’s poignant statement regarding a comment made by a doctor when advising a local treatment centre on their use of funds. Henry: It was a couple of years the Animal Shelter in [name of city] was getting more money than the treatment centre for our kids and one other thing, the [name of umbrella funding agency] at the time had a doctor advise them on medical aspects and one meeting he said, “well, there’s no sense putting too much money to your kids because they’re not going to do anything anyway.” Parents also expressed a wholistic perspective of their child through their realistic appraisal of his/her abilities. As a result, acceptance meant their child’s limitations were balanced 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 still find that hard to deal with. Al: ...its hard to say what we have learned with Sandra you have someone like Sandra. . . you learn to take things as they are and work from there and that’s important and that’s the way we see everything now and I think another thing we’ve learned too is that there aren’t any easy solutions. Barb: I guess what it amounted to was we’ve got a girl who’s really quite mentally alert here. We’ve got something going for us now. We can work on this because physically we were really going downhill, not going anywhere ....she couldn’t sit up, and she couldn’t roll over and she couldn’t do any of those.  88 She 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 professionals who were involved in their child’s life would “want to have her” and programs would consider their child as an individual. The following statement was recounted by one mother on several occasions and indicated the importance for parents that professionals saw their child as an individual: Anne: One thing I really feel about is that any teacher she had to want to have her. . . . she always got with a teacher who was sort of interested in what Sandra could do. And they’re the people that really helped your child. The support we got was really good, in fact I kind of feel that years we brought her up better than now. We’ve had all this deinstitutionalization but at the time they were closing institutions they were looking at the child as an individual and trying to fit her into something that would fit ‘her’. Whereas now, and I don’t know if this is true, but everybody seems to go through the same process and I wonder if they are looking at the individual child as closely now as they were willing to do then. You know, when they felt that they had to do things better. And you don’t just automatically put your child into an institution but they were looking at what you should do 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 disability that enabled them to continue their journey of acceptance. Acceptance Continues As parents recalled their experiences raising a child with a disability, they began to express the continued process of acceptance: the slow process of accepting their child’s disability and their accomplishments as parents.  One mother  89 stated that after many years of physical therapy, and rehabilitation,  surgeries  she began to realize and accept the extent  of her daughter’s limitations. Barb: . . . in any event, by nine we knew she wasn’t walking, she wasn’t going to feed herself, she wasn’t going to dress herself or bath herself or bathroom or do any of those things because you need arms to do those things and that was sort of a gradual realization that these things weren’t going to happen. Another mother talked about the slow process of coming to terms 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 to that there isn’t going to be a breakthrough, that this is a lifelong thing. This same mother hoped for a “magic cure” and part of her journey toward acceptance meant letting go of that hope. Anne: And, of course, this is the thing. You are hoping you are making some basic mistake.... You are wanting the magic cure. And finally you have to realize that the magic cure just isn’t there. As this mother continued to recall her experience,  she  demonstrated further acceptance of herself as a parent to her disabled child  -  an acceptance that allowed her to feel proud  of both her daughter and her abilities as a parent: Anne: (When you look back at being a parent all these years, what things do you feel the most proud of... you did well?) Teaching her to read was... finding this way around the problem. That was important to me... and sort of getting around doing things. I think we’ve come away from the experience of raising Sandra feeling good about... Well, we are proud of her and she lives comfortably with herself. She has her shortcomings but we feel she’s shown great courage and  90 determination and we’re proud of her now. And we do feel that she can make her way through the rest of her life when we’re gone with enough skills and good feelings about herself to live through to the end of her life. And she’ll live a long life because she’s a very healthy girl. Basically I think we are proud of her. One father remarked on the uniqueness of all his children. His comment reflected an acceptance of both his daughter with a disability and his efforts to be a good parent: .. .you Al: can’t blame yourself for a person being the way they are because that’s what they are. You don’t get them... When you have children, you don’t... you can put in an order for the child but you can’t say what kind or how they’re going to be. My oldest daughter and my middle daughter are quite different. Sandra is different again. They will all be different. You do the best you can...  Through the many stories that revealed the demands and difficulties parents faced raising their child with a disability, these parents also recounted the many ways their lives had been enriched.  The existential meanings parents  gave their experience as a mom or dad to a child with a disability has been conceptualized in the third phase of adjustment where parents began to face their own mortality and make concrete plans to provide for the future care of their adult 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 think about the future care needs of their child in light of their own aging and mortality.  While most parents felt pleased with  91 their son/daughter’s present living arrangements, they all acknowledged “some trepidation” about the security of their child’s future in light of “staff changes” and an uncertain “government climate.”  The third phase of adjustment marked  the point at which parents became ready to face the uncertainty of their child’s future and began planning for a time when their child must “survive after we do.”  This phase  also encompassed parents’ reflections of a lifetime of caregiving and the existential meanings they have given to the presence of their disabled child in their lives. Facing Their Adult Child’s Uncertain Future For these parents,  facing their adult child’s uncertain  future began when they acknowledged their own growing limitations in being able to provide the physical care their disabled son/daughter needed.  This time of transition  appeared to occur when parents consciously recognized their own mortality and began to realize the need for someone to carry on their role as caregiver once they were no longer able to do so. Facing one’s mortality.  For one mother, whose child had  been in a group home since the age of nine, the time of acknowledging the uncertainty of his future came when she began to realize that her son would,  in fact,  outlive her and  preparations for his continued care had to be made in light of her own mortality. Alice: There is some trepidation. I always... I’ve had to start thinking differently in the last few  92 years because in my mind for many years there was no question that I would outlive Kevin because that is what we had been told. Now that’s just not the case. For one father, the realization that he and his wife would not be around to take care of their daughter with a disability throughout her life “was probably always in the background.” However,  “it was around that point our own physical  limitations started be.  .  .  -  we were getting signs of them..  .  it would  certainly a transition at that point” when the need to  face his daughter’s uncertain future “became much more tangible.” I thought we would be around to do it [take Henry: care of their handicapped daughter], and then all of a sudden the realization comes, “well, you’re not going to be around forever.” So.. .1 guess at another point when she was quite young that life expectancy of all the kids like Mary wasn’t very great at that Until. .certainly in the very early year, I point. rather thought we would probably outlive Mary, anyway. And times have changed in that respect, also. As parents considered their son/daughter’s future in light of limited and/or changing community services, programs, and government funding, they recognized that their child’s future was “scary.”  As one father stated, while his daughter’s life  appeared fine at the present time, holds.  .  .  “who knows what the future  certainly things are a lot better than they were but  its still.. .you’d be foolish not to have misgivings.”  One  mother’s statement illustrated the gradual transition of parents in realizing their own growing physical limitations  93 and the need to prepare for the ongoing care of their adult child. Barb: .. .we’re getting too old physically to look her and that’s scary. after And even to come home for Christmas’s and holidays there is that time when we’re not going to be able to do it and I don’t know how you tell one of your children you’ll have to stay there [in the group home] for Christmas.. .the future concerns me. I think it concerns me that I will not be physically capable of taking her on holidays... As parents considered their child’s future that “some day we were going to die”  —  —  accepting  they began the process  of finding a way to continue their role as monitor of the son/daughter’s care. Continuing the role as monitor.  This process of  acknowledging their child’s future security was slow and incremental.  For one father, his readiness to face his  daughter’s uncertain future began with the stage of her leaving home  —  the time when “you break away from your parents  and you become.. .you establish your life independently somewhere else.”  As one mother recounted, while the need to  restrict the length of time her daughter spends with her and her husband “is an awful thing,” it is also necessary in order to prepare her daughter for a time when they will no longer be available to their child. Barb: . . .there will be a time when (a) either we die, or (b) we physically cannot do it. So this is the time to make the adjustments and while we’re still here to make it easier, to iron the kinks out, to see that things are done that should be done, it has to be done that way. I mean, you can’t love somebody and make their life more miserable at a future time. I mean that’s a rotten kind of love, I think.  94 One parent recounted her need to find someone to continue the monitoring role she had performed for years. I feel you know quite confident in the Alice: association. In the group home he’s in particularly. real Its a Excellent staff. good one. And the staff changes so you have to... as long as I have somebody who is going to be monitoring well it should be O.K. There is some trepidation. I always... I’ve had to start thinking differently in the last few years because in my mind for many years there was no question that I would outlive Kevin because that is what we had been told. Now that’s just not the case. Another mother expressed her fear that the quality of life her daughter presently enjoyed could be threatened by changing government commitments. Our only fear is, what if that breaks down or Anne: the government climate these days is getting meaner, meaner and stingier I think. So whether they’ll provide the quality that they are providing now for our daughter always is the question. So we’re still interested in. . . trying to get some kind of thing going for a network or a line of support for her in case there is a breakdown in the future. The services she can get. One father echoed similar concerns when he recounted his fear that the quality of his daughter’s life “depends on government funding.” Henry: I could see Mary in a group home parked in front of the T.V. set all day. She’s not assertive herself except when she’s at home here, so I’d be fearful about that. You know a lot of her life it depends on government funding, and if that was cut, well her care would suffer for it. You know, who’s to say ten or twenty years down the road what will occur? Another father spoke clearly about aging parents’ ongoing responsibilities to help their adult child “find a place” in life in order to survive after his/her parent dies.  95 And we were interested in what kind of things we Al: can do for children with handicaps who have grown into adults and who have to find a place and who have to survive after we do. As parents faced the uncertainty of their child’s future, they began the process of ‘letting go’ whereby concrete plans were beginning to be made in order to ensure someone took over their caregiving role to their adult child.  This caregiving  role was extended through the job of monitor and by overseeing the continuation of parents’ values and goals in decisions that were made on behalf of the adult child once parents died. Preparing to ‘Let Go’: Developing a Social Network Parents discussed the importance of developing a social network around their child as a way of ensuring the quality of care was maintained for their son/daughter once parents were no longer able to perform their role as monitor.  Social  networks were facilitated through an agency, which provided parents with a formalized way to bring family and/or friends together to arrange future planning for the care of the adult child with a disability when parents are unable to continue their caregiving roles.  This agency provided a way in which  parents could arrange for someone “to take over the monitoring role” and “specify the kinds of things we think will be best for [our child]. continued.”  And the ways in which we think it can be  One mother felt very strongly about the value of  social network planning as a way of preparing for the future of her son and a means by which she could feel more confident letting go of her lifetime role as caregiver.  96 Alice: I think Kevin’s future will be alright. I mean that’s one of the involvements of [name of agency]. 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 role that I do. The others don’t have the time to do The others, my son and daughter and their that. families, they’ll do a lot of the other things that I do. ... as long as I have somebody who is going to be monitoring well it should be O.K. . . . Certainly there’s a concern for the future and I think the longer I am in [name of agency] I look at things differently and see the way things should be... things should be prepared... I guess one of the things I would say to parents of any age, young parents as well, be prepared for the future. Try... parents should build networks around their son or daughter even when they are young. They become more self—sustaining and... its much harder to do it when they are older, much, much harder. I wish we’d been able 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 to see that she is cared for properly.”  After this mother  recounted the many ways in which she continues to oversee the ongoing care of her daughter things  —  e.g.,  “checking to make sure  [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 of  agency involved in arranging social network planning].”  This  father remains skeptical about the agency’s ability to provide the appropriate level of monitoring to ensure his daughter’s future will be well taken care of. Henry: Certainly the concept is good but its basically a new organization as I see it and all organizations often have troubled time and they can become ends to themselves become administratively heavy and so certainly we wouldn’t have subscribed —  —  97 to it if we didn’t have hopes for it. But, realistically one would have to give an open mind to (So again you can’t totally relax that they’ll it. be able to carry out your wishes?) No, I would say that’s quite right. While finding someone to carry on her task as monitor was very significant for parents in preparing for their child’s future,  it was also important for them that they have some way  of ensuring their values and goals, which directed their caregiving throughout their child’s life, be continued after they die.  Parents recounted numerous examples of the values  they held and the goals they had for their child’s future. One mother described the value she held that children with disabilities “should be living a full life.”  She attempted to  carry out this value while assuming the job of evaluating group homes prior to her daughter moving into an semi— independent living situation later in her life.  She and her  husband also tried to ensure that programs and services they utilized during their daughter’s life would “provide lots of experiences for her”  —  a value which was also important as  these parents attempted to plan for her future care. Anne: We... I was on the residential committee for the [name of the organization] . . . as a whole was trying to get some kind of monitoring for the group homes and for a while a was a monitor with that home. And my husband did as well. He would go and visit once a month and make a report. But it wasn’t satisfactory. And I tried at one point to sort of get them to focus on the child’s life.., its an adults obviously, but we’ll call them a child, a grown up child. But when you just go through and look at the physical plant of the place or even if you try to pick up on the emotional ambience you are still 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 a full life and a complete life.) Yes. As much as possible. Because that’s what we’ve tried to provide. And there are a lot of programs that they can go to that we always saw that she got to and we want that to continue. And the house has been very good about doing this and providing lots of experiences for her. Ya, we have been very fortunate. This mother’s statement demonstrated her past search for meaningful programs and experiences for her daughter and the importance that her daughter be given experiences that provide a full and meaningful life in the present and the future. For another father,  living a full life meant “ensuring  that she has a social life and that day-to-day care is suitable.” Henry: .you know what I’d like for her is to have a happy social type of life that... and I guess there’s hope that it’ll come about but there’s no assurance that it will. I guess there’s a mixture of hope and misgiving, really. Certainly its not something really money can cure. Its more having infrastructure that will bring it about... .  .  The idea is to get people like Mary out in the community and she’s doing.. .horseback riding and works their office for half a day a week, gets running various things like that. Goes sailing in the summer.. .that requires the right people to ensure things like that happen and, you know, will supervise her. And, Mary’s workers are just excellent at it and I think that’s largely why she is coming out of herself a lot now. Without people like that who can really do it, it would be a pretty barren social like for her, I think. This father made the distinction between doing a job and caring about the people you are working with. Henry: You can fill the position but people can go through the motions or they can really do it. .1 guess [you can] write up a report that people are .  99 having a really great social life and where they are just being carted to somewhere, or you can ensure they are really participating and doing what they want to do. One father described the importance to him that his daughter live in a situation where “she fits in”.  This father  saw his daughter presently living in a situation that was the “kind of thing we would always like to see her in”  —  a  situation where many of their values had been extended to her present situation. So, she began to want to move into a group home, Al: move into an apartment or something like that. We didn’t want her to move into a place where she would be totally dependent. We didn’t want this thing called independence because we don’t believe that anybody is independent and Sandra... and a handicapped person ... independence means lonely because there is nobody there with you, nobody to be with and nobody to help you along and nobody to make your life worth living as far as that goes. So it came up eventually came up that establishing semi—independent living situation and we got Sandra into it and she feels... she fits in just like this. It worked fine for her. ... Sandra lives there in that situation and enjoys it. We’d like to have her keep on doing it. As far as having a support network, the place where she is living in has turned out to be as good as anything we could have hoped for. As far as the paid staff are concerned, very supportive, very ingenious in finding ways to help her. Take her on vacation with them and that kind of thing. I think because we’ve got Sandra along to be part of the group, or go with us and do activities with people and she is easy to get along with when you understand her limitations she’s fine. And the girls over there just think she’s great company. So they take her along on holidays. -  -  This father’s statement also demonstrated how he and his wife had integrated their daughter into their present family  100 functions and revealed how their value of integration had transferred into her present living situation for which they are very pleased.  The importance to this father that such a  situation continue in the future was also evident: But of course they [the present staff of the Al: group home] won’t be there forever. The situation will change. And I guess we need [the agency] to specify the kinds of things we think will be best for Sandra. And the ways in which we think it can be continued and then set up some kind of network to make sure that kind of thing does happen for Sandra during her life. For one mother,  the primary value she held was that her  daughter not be seen as a “second class citizen” not something to be stared at and pitied”, living arrangement she may be in  ...  —  that “she’s  that “whatever  [she’s not] put[ting] up  with less than anybody else should.” Barb: Our kids are [seen] as second class citizens and I guess that still bugs me. They have no rights. Everything they get is priviledge. That I’d have changed all the way down the line. -  While this mother “gave her the best growing up life she could have had. part of  She had fun.  She enjoyed,  she laughed.  She was a  [the family],” the values of integration and living a  full life have not as yet been realized.  In spite of her  daughter moving into a group home and attaining a certain amount of independence, this mother did not feel it had “been a good home.. .it’s been a disaster of a home.”  As such,  she  felt her daughter’s life remained “empty” and the values this mother held were not being adequately carried on during this transition time of ‘letting go.’  As a result, this mother  101 remains “emotionally drained” as she worries about the quality of her daughter’s life,  and letting go of her role as monitor  of her daughter’s care becomes increasingly more difficult. Barb: I would like to see her have a life. I would like to see her happy. I would like to see that for all our children they’re no different and the only thing is I think that if the others are unhappy for whatever reasons, say it may be a divorce or whatever, I have confidence that they will manage and then see a future, whereas I’m not sure she will. . . if she will ever. -  -  I’m just sorry that her life is so empty for her. I would be sorry if the other’s lives were empty. There again, its up to them, though. And I somehow still feel responsible for her. The others its your life, you change it. I’ll be there if you need me. But for her I still feel responsible or that responsibility is there. I can’t say, “no, you’re an adult now.” I can’t do that, yet. For some parents, they had found living situations for their son/daughter that they believed provided the quality care they hoped for their child and they have found ways to extend their caregiving role after they have died.  These  parents were “fairly optimistic” about the their adult son/daughter’s future.  One mother’s discussion illustrated  how she had to consciously prepare to let go of her role as parent to a child with a disability at a time when most parents no longer worried about the day—to—day caregiving needs of their children.  However, this conscious ‘letting go’  of the caregiving role assisted these aging parents to feel optimistic about their child’s future. Alice: Yes, so I’m fairly optimistic. You know some things won’t, probably won’t... Its amazing the sort  102 of things you have to monitor about him. You know like my son—in—law says, “Kevin’s dress pants are too short. Tell them to lengthen them.” I don’t really care. That’s not what’s important. It may be important to Don but its not important to me. It’s not important for me to make an issue about that. I’ll make an issue about clothes if they are inappropriate for the whether. Like I’ve had made issues before, you know he’s got to wear lighter clothes. They can’t see him crossing those dark streets. Those kind of things about clothes or if the clothes are dirty or something like that. I don’t really care if they are an inch short. Who cares? That’s not... certainly I would prefer it, but that is not what I’ll make an issue about. But there is many, many things that I think my sister would make an issue about something I feel is not important enough. Those are detailed things. But then she’ll have to adjust. The staff will have to adjust, and Kevin will have to adjust; that’s all there is to it... As parents faced their mortality and prepared to let go of their role as caregiver, they also recounted numerous ways they had come to accept themselves as parents of a disabled child, their life as it had been and the meaning they gave to having had a child with a disability.  The following sections  discuss this aspect of parents’ experience. Acceptance of One’s Self and One’s Self as a Parent Parents recounted many stories which demonstrated their pride in their child’s accomplishments and pride in themselves for their success in developing his/her skills and fostering independence,  courage and strength in their adult child with a  disability. Al: I think Sandra is as capable . . . Sandra is capable but we’ve developed her strengths as strong as we can and we’ve helped her to overcome her shortcomings as well as we can and that feels good. This same father saw his job of raising his child with a  103 disability as a “challenge” and a challenge he felt proud having successfully met. Al: I feel good that there has been a big challenge and we’ve managed it and that we’ve demonstrated this to our... not just to ourselves but demonstrated it very strongly that we’re strong [laughing].. We’re strong ... we had a challenge which... and many people faced with similar challenges have gone walked away from it or done a very poor job of it and we’ve done a good job of it. ... It feels good that we 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 lot better than most of them but I do feel that I’ve done as good as ... as well as we could with the person we’ve had. And because Sandra in a sense has a lot more talent than most other people with similar kinds of handicaps. For people with severe mental disabilities who can’t really read or wouldn’t be able to learn to read . . .who doesn’t have the physical coordination.., their expectations are not so high... we feel that Sandra has come up to our expectations. Another father, however, expressed strong feelings of inadequacy and regret that he had not been able to do more for his daughter with a disability.  For him,  accepting himself as  a parent meant “sort of forgetting instead of letting go.” This father felt he could have been “more helpful or supportive” to his wife as the “bulk of Mary’s upbringing fell on [her].”  He also wished he “could have probably made her  life easier with being able to provide more devices and things of that sort of a mechanical nature” as well as having been more of an advocate for services that his disabled daughter needed over the years.  However, this father also wished he  had been more responsive to the needs of his other children. Henry:  Well,  to tell the truth I always felt that I  104 probably could have done better so...I...can’t say that I feel really great about anything [as a parent]. You could say, well, gee we kept her at home and so and so didn’t. But, everyone’s problems are different...so (long pause) I’m afraid I can’t give you a good answer on that one. I’d say the same with my other children though. I wouldn’t make an exception. For one father, however, reviewing his life in light of having cared for his daughter with a diability also meant he reflected on this experience as it impacted on his career. Al: I don’t know whether I would have done anything differently in my career and that’s partly because of the kind of person I am. I don’t know if I could have really pushed my career in a different directions than I did and I did very well. There might have been more time to do more things in my career but I don’t... I would have probably spent it doing other things than doing with the family. But I did learn and I think we both come to the idea that this has been... although our life has been different from what we predicted it would be, maybe we don’t have quite as much money as we could have had. Maybe we don’t live in a bigger house than we have now. Haven’t gone out to do all those things. We’re just as well ahead as anybody else. For mothers, parenthood  their career and their sense  of fulfilment and accomplishment as women came when they realized they had succeeded in raising children who had developed to their greatest potential.  This mother spoke  about her success as a parent as she recounted her confidence that her adult child could successfully negotiate “her way through.  .  .her life” after this parent dies.  Anne: And we do feel that she can make her way through the rest of her life when we’re gone with enough skills and good feelings about herself to live through to the end of her life. Parent’s also vividly recounted the way their child’s  105 disability had contributed to their sense of personal achievement and development.  For one father, his  accomplishments as a parent were as personally rewarding as having made “a lot of money.” Al: It feels just as good as making a lot of money or whatever else a person would want to do. In addition to accepting their successes as parents, these parents also recounted acceptance of their life as it had been. Acceptance of One’s Life as it Has Been As parents recounted their experience of caring for a child with a disability over a lifetime, they reflected on the choices they had made over the years, unfolded.  and their life as it had  Parents demonstrated an acceptance of the questions  they “don’t know the answers to” which helped them come to terms with difficult decisions made in the past.  One mother,  who regretted her decision to place her son in a group home at a very young age, was able to resolve some of her feelings by accepting the pressures and constraints of her life at the time. Alice: And when you say what would you do that was different... if I could possibly have kept him home I would have done so. But looking at it, that might have been more detrimental to him. I don’t know. I don’t know the answers to that. I would like to have. If our marriage would have been different that would have probably been an option. I felt pressures. I felt that I was doing it all alone. And I thought that was extremely hard. I did put pressures on myself that I shouldn’t have but it all worked out. Parents also discussed the importance of accepting “one’s  106 mistakes” along the way and learning from them,  as these  mothers point out. What would I do differently? Alice: I don’t know how one can answer that you know I... I think the best thing is one learns from one’s mistakes and you do it differently as you go along. You do. You think, “Oh, I shouldn’t have done that. That really didn’t help Kevin. What’s the best way to help him.” And I’m still always doing that, trying to look at alternative ways to help him. Anne: (Are there any things you would have done differently?) I don’t think so. Even the mistakes you make are sort of unavoidable because you don’t know a thing is a mistake until you try it. And then it doesn’t work out for you... Yea, no I don’t think, I don’t think there was very much we could have done other than what we did. For another mother, the struggle to accept her mistakes had been won; however,  she continued to grapple with whether  or not she had been successful as a parent. Barb: I don’t have guilt feelings. I mean I have feelings that I have made mistakes but I don’t feel guilty. I did the best I could and I accept that there was nobody that could...there was nobody giving me advice that, through those years anyhow, there was no advice, nobody. . . .you just played it blind. You did the best you could with the sort of common sense and knowledge I had of your own, and if you made a mistake, well, I did the best I could, that’s all I can say. For this mother,  she had raised her daughter according to the  values she held:  she “treated her like she was one of the  family and part of the family” and believed it was her job to make all her children “self—reliant,  independent,  adults;” for her handicapped daughter,  responsible  she consciously thought  she “had to give her whatever we could to (not compensate) to make her life as full as possible.”  but  107 Barb: I treated her like I would of the others.. .1 always went on the theory is, if Mary weren’t handicapped would I take her? And, if the answer was yes, she went, and if it was not, then you stayed home and then I’d have a good reason to. But she went wherever anyone else went so, maybe we should have done it differently. Yet, as this mother recounted numerous stories which illustrated the values by which she raised her daughter,  she  also demonstrated her struggle to accept her limitations as a parent; she could not make her daughter happy:  she could not  give her daughter the full life she so dearly wanted her to have. Barb: I often feel that I maybe set her up for failures so to speak that, you know, that the way we made her just part of everything that she thought that was going to be the way life was. But it wasn’t. I don’t know what I’d have done differently or how I would have done differently or how I could have prepared her better. This mother recalled feelings of grief, which she had become 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 a full life in [my daughter’s]  opinion.”  Barb: I guess maybe they [her children] have attained the things I wanted for them. Independence, self-reliance; whatever field they wanted to go in to, they appeared to have done that. Whereas Mary has done none of that. And I don’t mean done none of that because she can’t feed herself that’s not what its about. She’s not independent. She isn’t self reliant. She’s not happy and hasn’t been happy for a lot of years. So I think that’s...if I could see her happy and living a full life in her opinion, not mine, hers, I think the grieving would stop. But I don’t see that ever happening so I guess the grieving goes on... —  108 In spite of her grief, this mother also recounted the positive ways in which her disabled child had impacted her life. Barb: I’m delighted that I had her. I’m not sure she’s delighted she was born. You know, if I were in her position I might not either...she’s been a learning process. She’s broadened us all. Maybe we were very insensitive to other people. I’ve certainly learned things... (How do you think she’s changed your life for the better?) She’s broadened She’s opened my eyes. it. Another factor which arose was how the presence of their disabled son/daughter contributed to parents’ sense of personal development.  One mother stated that because of  “having a son like Kevin” she had “met so many wonderful people...  just tremendous people” and had grown through the  experience of raising a child with a disability. Alice: (As Kevin’s mom is there anything particular that you feel proud of or feel good about that you have done as a parent?) Oh yes, I do and its not just for Kevin but in starting the preschool. I think that was important and I guess I’ve been... its amazing... as I told you I didn’t even know how to chair a meeting. I didn’t know how to do any of those things. I think that I’ve helped not only to help Kevin but a lot of other people. I have parents phoning me all the time and... parents I have known for years and years and years and I’ve met some very fine people... [long pause] While parents discussed the many ways their adult son/daughter had contributed to their development as individuals and the numerous ways they felt proud of their accomplishments as parents, the mothers and one father also recounted an overall satisfaction having lived with and cared for a child with a disability.  The last theme to be presented  in this third phase of adjustment explores the existential  109 meaning parents give their life raising a child with a disability. From the Everyday Experience of Caregiving to an Existential Meaning Parents’ reflections of their lifetime of caring brought them to a depth of acceptance that balanced the realities of their everyday struggles and demands with an existential meaning of their lifetime of caring.  This existential meaning  refers to the way parents were able to acknowledge the pain, sadness and loss of their experience while also recognizing how they had been changed, compensated and created by it. As one noted author described,  “the disability is now woven into  their past; it is bound up with what they have lived through and what they are.  They could not remove the painful thread  without ripping out the whole fabric of their existence” (Featherstone,  1989, p.  230).  One father’s statement revealed both the tension and the meaning of the challenge he experienced raising his handicapped daughter: Al: And who knows, whether there’s regrets about whether there would be other satisfactions that would have been greater in our lives, how do you know? I mean its what our life has been. And it has been very satisfying, overall. Frustrating. Well, I tell you, there have been times when it would have been easy ... I thought many times, “Wouldn’t it be easy,” ... you couldn’t carry on any more, didn’t know where to go next and what to do. ... It is satisfying and deep down inside we feel well what we did ... (mumble) it was good ... (mumble) as other people who have done the same as they did, we deal with the task at hand. I look at my  110 brother—in—law who is a nuclear physicist and my brother who is an anthropologist and, you know, we just didn’t get into those things, but what we did get into we did just as well as they did. It took as much of us as their work did for them. For one mother, the process of grappling with the existential meaning of her experience raising a daughter with a disability meant an ongoing struggle to balance the many ways her daughter has enriched her life with the cost to her daughter of having to live with a disability.  For this  mother, the joy she experienced having raised her daughter cannot easily outweigh the price her daughter may have paid. Barb: . . . If I had my drothers to go back when Mary was born I think it would be the kind thing if she hadn’t survived for her but not for me. I can handle me. I can’t handle her. Her hurts. I don’t think all handicapped people have her hurts but from where she comes from she doesn’t have enough of a life. Its not good enough and she knows it. That’s what I have trouble with.  I don’t know if I did Mary a favour by struggling through all the pneumonia and keeping her alive. I don’t know if she would thank me for that now. I really don’t. And that’s what I feel about. . . I’m not sorry I had her. I’m just not sure she would feel that way. For another mother, this statement spoke to parents’ process of acceptance  —  a process that encapsulates the pain  and the joy: Anne: There’s a story I should tell you that... I think I can tell without crying [laughs). I met a woman who had a child once and she told a story about herself that... She would never wish the experience of having a handicapped child on somebody else.  111 But she wouldn’t part with the experience either. And, ya, I think that’s it. I was very impressed when she said that. I thought that really was the way I really feel about Sandra. While parents embarked on a process of acceptance that began when they discovered their child had a disability and progressed to a point where they acknowledged they had been changed by the experience  -  and often changed for the better  this process was not linear nor was it final.  -  Certain aspects  of acceptance appeared to assist parents in feeling pride in themselves as individuals and parents, and this pride allowed them to progress through their own developmental stage of aging with a confidence in what they had contributed in their lives.  For many, this acceptance also provided parents with a  confidence in their adult child’s future, and contributed to their ability to face the realities of their son/daughter’s uncertain future.  By considering their adult child’s future  care, parents prepared to let go of their lifetime of caregivng by making concrete plans for their son/daughter in preparation for the time when they no longer will be able to carry out their caregiving responsibilities.  In this way, the  parents in this study began to answer the question: happens to my child when I die?”  “What  112 Summary  The experience of aging parents caring for their adult son/daughter with a disability has been described in terms of three phases of adjustment: Disability, 2)  1)  Initial Realization of the  Parents’ Mission, and 3)  cares for my child when I die?”  Future Planning:  These phases provided a  conceptual framework for understanding aging parents’ of caring,  “Who  lifetime  and represent a nonlinear process which parents  embarked on as they adjusted to, and cared for, their child with a disability.  Parents’ vivid accounts of their  experience highlighted common themes which characterized each phase of adjustment.  Acceptance was a thread running through  each phase and was used to conceptualize parents’ journey toward a deeper understanding and the meaning that their son/daughter’s disability has had in their lives. In reflecting on their experiences, many of which were painful and demanding, parents recounted a process of acceptance which is signified by four prominent characteristics.  The process of acceptance first of all  represented a resolution of some difficult choices in the past.  Second,  it indicated a realization of their success as  parents of a child with a disability.  Third, parents  recognized they had become better people for having cared for a child with a disability and they took pride in the personal achievements which resulted from such care.  Fourth,  it was  113 marked by an appreciation of the strengths and abilities of their son/daughter. Parents’ ability to feel “satisfaction” for their lives as parents to a child with a disability, as well as their ability to plan for his/her future needs once they will no longer be able to continue their caregiving role, helped parents feel optimistic about the future of their child and themselves.  A  father described “the challenge” of caring for a child with a disability by stating,  “...you know,  considering the challenge  we 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 feel optimistic that their child’s future will one day change gets “smaller all the time.”  And,  for one mother, the impact on  her is living with grief that has “no signs that it will ever change.”  The research method of phenomenology used to elicit parents’ understanding of a lifetime of caring for a child with a disability has allowed parents to recount both the positive and the negative aspects of their experience.  By  examining parents’ experience in its totality, this study has demonstrated that the “whole” was indeed “quite different from the sum of its parts”  (Omery,  1983, p.  60).  A review of the  literature revealed that most studies conducted on the experiences of aging parents anticipated primarily negative  114 impacts on parents caring for a child with a disability. Previous research indicates contradictions and unexpected results regarding what parents find stressful as a caregiver to a handicapped child. This study, however,  suggested that the presence of a  child with a disability in the lives of these parents had contributed positively to parents’ sense of self, their perceptions of themselves as parents, and the meanings and interpretations they give their lives in spite of result of  -  having cared for a disabled child.  —  or as a  While it is  critical that parents’ struggles not be underestimated, nor the pain and loss they described be minimized,  these aging  parents demonstrated an ability, upon reflection, to embrace the positive aspects of their experience and allow the more painful features to recede. This is a testimony to the resilience and strength of parents, and may be a gift of aging, which can provide hope to young families raising a son/daughter with a disability. Parents’ accounts of their experiences with professionals also suggested the value of social workers who listen to parents’  stories.  With increasing case loads and decreasing  resources, the dilemma for social workers is the lack of time to listen and encourage parents’  life review.  However, by  hearing aging parents’ needs and concerns in the context of a lifetime of struggles and demands, achievements and accomplishments,  social workers will be able to identify  115 parent’s values and goals.  These values and goals provide  important insight as to the skills and resourcefulness of parents,  and are a particularly significant aspect to planning  for their adult child’s future. The participants of this study recounted the importance to them of extending their values and goals to the life of their adult child once they are unable to actively continue their role as caregiver.  Extending these values was a significant  element to ensuring a quality life for their child,  and it was  this quality of life which contributed to parents’ addressing their own developmental needs of aging:  facing their  mortality; preparing to let go of their role as primary caregiver to their adult child; and coming to terms with their life as it has been.  The process of listening to parents’  accounts of their lifetime of caring for a child with a disability may begin to assist these parents in realizing the full extent of the impact having cared for their child has had on them.  Upon reflection, one father recalled his tearful  response when asked to describe his experience raising his disabled daughter.  For this father, he “couldn’t believe that  here I was blubbering away last time and yet... warning that was going to happen. happen.  it wasn’t any  Even seconds before it did  There must be something stored back there that I’m  not aware of.  But it’s there I guess.”  An additional point worth mentioning is that this study demonstrated the value of social workers adopting a wholistic  116 perspective toward the person with a disability and the families caring for him/her.  Parents vividly recounted the  value of an integrative, wholistic perspective to their being able to gradually adjust and accommodate to the unique effects that having cared for a disabled child over a lifetime has had on them.  For those professionals who also embraced such a  perspective, parents felt “they helped” in their process of acceptance.  The implications of these findings will be  presented in the final chapter.  117 CHAPTER 5 Conclusions and Implications  Conclusions This study was designed to discover and describe the experience of aging parents caring for their adult son/daughter with a disability.  With the continued movement  toward deinstitutionalization, and community-based health care, an increasing number of aging parents are caring for their adult son/daughter with a disability in the community. A literature review revealed that research on the experiences of aging parents has primarily employed quantitative studies that have focused on a limited range of aging parents’ needs and concerns regarding their caretaking responsibilities to a child with a disability.  In addition, this research has  typically assumed such experiences to be negative.  This has  resulted in studies that have neglected the positive contributions a child with a disability can make to parents’ lives,  and the positive perceptions parents may have of their  lifetime of caring.  Such research may in fact be missing a  great deal as it presupposes a definition of what that experience has been for aging parents.  An understanding of  the totality of aging parents’ experiences will be beneficial in providing important insights into the needs of parents as they face their own developmental process of aging. Understanding parents’ perceptions of a lifetime of caregiving  118 will be important to social workers in providing quality and timely services to this growing population. In order to provide parents with an opportunity to describe their experiences,  the research method of  phenomenology was chosen to elicit parents’ understanding of raising a child with a disability. guiding this study has been:  As a result, the question  What are the experiences of  aging parents caring for their adult son/daughter with a disability? Data was collected through in-depth interviews with three mothers and two fathers of adult children with disabilities. Parents were interviewed in their homes and each parent participated in two interviews. The data collected was analyzed and common themes were identified.  The  conceptualization of the experience was confirmed by three parents during the second interview.  The remaining two  participants were unavailable to comment on the conceptual framework. Parents’ experiences were conceptualized according to three phases of adjustment, which represent a nonlinear process of acceptance and were characterized by key themes within each phase.  These phases, key themes and implications  for social work are illustrated in Appendix G. findings,  From these  implications for social work are clear.  A summary  of each phase of adjustment and its relevance to social work  119 practice,  followed by implications for future research, will  be discussed in the remainder of this chapter.  Summary of Findings and Implications for Social Work The first phase represented parents’  initial realization  of their child’s disability, and was characterized by strong emotions such as loss, grief and shock.  Parents described  excessive caregiving demands due to their child’s disability and severe health problems.  As a result, parents experienced  a great deal of stress and exhaustion accompanied by ongoing encounters with medical professionals.  In addition,  this  phase represented the beginning of parents’ acceptance of their child’s disability, and of a concerted effort to learn all they could about his/her handicap. Social workers need to provide parents with information about their child’s disability and direct parents to available resources that will assist them in learning, understanding and adjusting to his/her disability and the caregiving demands which result.  Social workers need to validate parent’s  stress, exhaustion,  fears and worries in order to provide  emotional support and guidance to parents and families. addition,  In  social workers need to provide both peer and  professional opportunities for parents to discuss their feelings and tell their stories in order to facilitate their coping with the stress and isolation that often occurs as a result of continuous caregiving.  120 The second phase of adjustment represented parents’ mission: their efforts to secure services, programs and professional assistance to help their child develop to his/her greatest potential.  During this phase, parents assumed  multiple roles as they endeavoured to develop their child’s abilities and skills.  Parents assumed the role of teacher,  physical therapist, monitor and facilitator of information to professionals in an effort to respond to the enormous,  ongoing  caregiving demands of their child, and to find ways to develop his/her potential.  This phase was also identified by a  continuation of parents’ process of acceptance whereby parents’ wholistic perspective toward their child’s disability provided a bridge to their acceptance of themselves as parents. At this stage of parents’ lives, in many ways.  social workers can assist  Parents need information on services and  programs that will both develop their child’s skills and abilities as well as provide relief to them from the stress and pressure of ongoing caregiving.  Programs for the child  include choices in educational, recreational and social opportunities, as well as technological expertise to assist the child with a disability to become as independent as possible 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 with time to devote to other children as well as to get the much  121 needed rest and recreation for themselves.  Furthermore,  parents may benefit from financial assistance to help meet the often high costs of caring for a child with a disability. Where programs and services do not exist,  social workers can  facilitate their development and, where programs are available, they need to minimize,  for parents, the frequently  existing bureaucratic obstacles in an effort to decrease the time and effort it takes for parents to access resources. Once again,  social workers need to validate and affirm  parents’ diligence and commitment to the care of their child and his/her integration into the family. empathizing with, parents’ stories,  By listening to, and  social workers can  facilitate parents’ understanding and meaning of their experience.  This,  in turn,  can promote an ongoing process of  parents’ acceptance of their child’s disability and the effect he/she has on their life, thus giving parents an opportunity to feel less alone and isolated as well as to see both the positive and negative aspects of their life as parents of a child with a disability.  Additionally,  social workers need to  educate other professionals regarding the importance of adopting a wholistic perspective towards the disabled child and parents’ efforts to care for him/her.  This involves  focusing on the child’s strengths, abilities and contributions, as well as acknowledging his/her needs, limitations and inabilities.  In this way, professionals  affirm parents’ efforts to integrate their child into the  122 family and community,  and validate parents’  love for, and  commitment to, him/her. The third phase represented parents’ future planning and depicted a process of preparing for their adult son/daughter’s uncertain future when they will no longer be able to continue their caregiving role.  This phase is characterized by parents  preparing to let go of their caregiving role through developing of social networks.  This third phase illustrated  the process of accepting one’s life as it has been and moving from the everyday experience of caregiving to the existential meaning of that experience. During this phase of adjustment, social workers have an opportunity to provide important assistance to aging parents. Both peer and professional support is needed for parents in order to provide opportunities to discuss their fears and concerns about their own advancing years and what this means to the ongoing care of their disabled child.  It is vital that  social workers recognize and respect the diligence, commitment and care with which these parents have cared for,  and  advocated on behalf of, their child throughout his/her life. There must be a recognition of the difficulties aging parents encounter as they face their child’s uncertain future and begin to risk letting go of their lifetime role as caregiver. Martin (1981)  writes,  “parents have the right to cope with the  reality of having a handicapped child in their own way and on their own time frame”  (p.  99).  Parents need the opportunity  123 to talk about their needs.  Social workers need to take the  time to listen to these concerns,  and to affirm parents for  their work and achievements. Of particular significance to listening to parents’ stories is giving parents an opportunity to express the meaning they have given the presence of their child’s disability in their lives.  This gives parents a chance to  recount both the positive and negative aspects of their experience,  to formulate personal meanings,  important emotions.  As Benner and Wrubel  and to express  (1989)  state, these  emotions “bring the past interpretation of the situation into the present, where past history can be reinterpreted and reconstituted”  (p.  97).  One’s emotions and personal meanings  provide direction to various coping options in the present, and help the professional see parents’ strengths, determination, resourcefulness and values, which provide insight into how best to assist parents to come to terms with their life as a parent to a child with a disability.  Then,  parents can be given the support and direction they need to negotiate their own transitions of aging.  Time to hear  parents’ needs and concerns in the context of a lifetime of struggles and demands, achievements and accomplishments will assist social workers in helping parents with future planning for their son/daughter. Future planning was a significant aspect in addressing parent’s own developmental needs of aging  —  in particular,  124 coming to terms with one’s declining physical abilities; facing one’s mortality; accepting one’s self and one’s self as parent; and accepting one’s life as it has been. parent of a disabled child,  For the  addressing the issues of aging  needs to be done in the context of the ongoing caregiving given to a dependent adult child.  A significant aspect for  parents in facing their advancing years is the active planning and preparation for their child’s care when they are no longer able to fulfil the role of primary caregiver. involve,  among other things, the formal  This can  development of social  networks whereby families and friends oversee various aspects of the adult child’s care on behalf of the aging parent. Few services are available for adult children with disabilities, and fewer still for the parents who care for them.  Social workers must be willing to challenge the system  on behalf of parents in order to develop community—based services for adults with disabilities that foster their independence and provide for their future care.  By social  workers understanding the developmental needs of aging parents, they are in a unique position of anticipating the need for services before a crisis occurs.  These services  would include respite and homemaker services for parents, various independent living options cnd employment! recreational opportunities for the adult child. work advocacy and provision of such services,  By social  aging parents  will have the resources and support to facilitate a positive  125  transition for their adult child’s independence and will thus be able to more readily prepare for their own process of aging. Social workers must recognize and be knowledgeable about the importance of future planning to the developmental needs of aging parents who care for a child with a disability.  This  involves being aware of the community services and resources that can guide parents in preparing for estate planning, wills and finding appropriate trustees who will make decisions regarding their son/daughter’s care in ways that foster parents’ values and goals.  Appropriate training and  education would be helpful in preparing social workers to assist parents in this area. Throughout these planning stages, social workers must sensitively deal with families’ ongoing life process in light of caring for a disabled child. The overall experience of parents caring for a child with a disability indicates parent perceptions are largely positive with the child with a disability positively contributing to parents’  lives.  While parents speak of the loss,  stress and  pressure of raising a child with a disability, they also recounted positive stories of their child and described numerous ways in which they have gained from the experience of raising a son/daughter with a diability. The strength of phenomenology as both a research method and a philosophy informing and guiding practice is that it allows parents to express both the benefits as well as the  126 limitations of their experience.  Featherstone  (1980)  states  “good listeners discover strengths as well as weakness” 214).  (p.  This study has demonstrated that when aging parents  have been given the opportunity to reflect on their experiences raising a child with a disability, they have told a very positive story regarding the meaning and impact this lifetime of caring has had. A phenomenological view proposes that “our present lives contain the content of past experience in such a way as to open to us certain possibilities in the future” Wrubel,  1989, p.  123).  (Benner &  In recounting their past experiences,  the parents who participated in this study demonstrated a strength and diligence that continues in the present and allows them a hope and optimism that helps them plan for the future care of their child and face their own process of aging.  It is important for professionals to remember that  disability is an interpretation: one thing it interprets is an ongoing life course.  The meanings and interpretations of a  lifetime of caring for an adult child with a disability can “create new options, new ways to think, (Benner & Wrubel,  1989, p.  22)  feel and relate”  that have significant  implications for aging parents faced with the question of who will care for my adult child when I am no longer able to care for him/her.  The implications of this study for future  research will be discussed in the remainder of this chapter.  127 Implications for Future Research This study was restricted by its neglect of parents from a variety of socio—economic and ethnic backgrounds.  Given that  the Canadian population is becoming increasingly multicultural,  further research addressing the impact of  various ethnic groups would be a valuable addition to understanding parents’ lifetime of caring,  as would studies  investigating class and economic differences of parents and families. Participants in this study were from professional backgrounds, had found services for their adult child that they considered positive, and were people able to negotiate the formal system of support, such as schools and social services.  However, more research needs to be done to explore  the impact on parents who do not have access to services and programs that allow their adult child to live independently and be well supported by people other than his/her parent. In addition,  further studies need to be conducted on the  impact on the siblings of a child with a disability.  Research  into siblings’ roles regarding their disabled brother/sister’s future care would also be important to issues of future planning by parents for their child with a disability. well,  As  studies on the value of social networks as a way for  parents to prepare for the future of their child and themselves would be an exciting and important area for further study.  Other areas of future study include an examination of  128 the differences and similarities of mothers’ and fathers’ experiences caring for a disabled child.  Because there are  many parents of children with a disability who have experienced institutionalization at some point in their child’s lifetime, a comparative study between parents who cared for their child in the community and those who experienced institutionalization would also be helpful to broaden our understanding of the effects of institution alization and the psychosocial needs of these parents’ through the transition of aging.  Summary The goal of this study was to discover and describe the experiences of aging parents caring for their adult son/daughter with a disability in the community.  The research  method of phenomenology was chosen in order to elicit parents’ stories -  —  involving descriptions,  of a lifetime of caring.  interpretations and meanings  Chapter One introduced the problem  and presented a brief overview as to how the study would be carried out.  In Chapter Two, a discussion of the  philosophical tenets of phenomenology was presented as a foundation for the research methodology chosen.  In addition,  relevant literature regarding this population was presented, which revealed few qualitative studies on the experiences of aging parents caring for an adult son/daughter with a disability.  Quantitative studies, however, have focused on  129 limited aspects of parents’ experiences primarily addressing stress and burden, and future planning needs for the adult child.  Chapter Three presented the methodology undertaken to  address the research question, and Chapter Four introduced and discussed the findings. Overall, while they recounted many difficult and challenging times as a parent of a child with a disability, upon reflection, parents recounted numerous positive stories about their child and the impact he/she has had on themselves and their lives.  Of particular concern to aging parents  continues to be the need for future planning as a critical way to secure their son/daughter’s future needs in order that they can begin to let go of their ongoing role as caregiver. this way,  In  aging parents will begin to face their own  developmental issues of aging.  Social workers have an  important role to play in assisting parents in their efforts to care for their adult child through the development of programs and services that address the needs of both parents and their children.  Implications to social work have been  discussed in this last chapter, primarily the need for a comprehensive understanding of, a sensitivity to,  aging  parents’ developmental needs and concerns as well as a willingness to hear parents out and advocate and provide appropriate services.  130 References  Anderson, J. (1992). Process of data analysis. Unpublished paper presented in Nursing 522, University of British Columbia. Benner, P., & Wrubel, J. (1989). Primacy of caring: Stress and coping in health and illness. Menlo Park, California: Addison-Wesley. Bogdan, R., & Taylor, S.J. (1975). Introduction to qualitative research methods: A phenomenoloqical approach to the social services. New York: Wiley & Sons. Brotherson, M., Turnbull, A.P., Bronicki, G.J., Houghton, J., Roeder—Gordon, C., Summers, J., & Turnbull, H.R. (1988). Transition into adulthood: Parental planning for sons and daughters with disabilities. Education and Training in Mental Retardation, (3), 165-174. Brunn, L. (1985). Elderly parent and dependent adult child. Journal of Contemporary Social Work, 66(3), 131-138. Crabtree, B.F., & Miller, W.L. (1992). Research (Vol. 2). Sage: Newbury. Craib, I. (1984). Wheatsheaf.  Doing Qualitative  Modern social theory.  Featherstone, H. (1980). York: Penguin Books.  New York: Harvester  A difference in the family.  New  Flynn, M.C., & Saleem, J.K. (1986). Adults who are mentally handicapped and living with their parents: Satisfaction and perceptions regarding their lives and circumstances. Journal of Mental Deficiency Research, 30, 379-387. Foster, M., & Berger, M. (1985). Research with families with handicapped children: A multilevel systemic perspective. In The Handbook of Family Psychology and Therapy, (pp. 741— 780). Dorsey Professional Books. Funk & Wagnalls (Eds.). (1976). Standard College Dictionary. Toronto: Fitzhenry & Whiteside. Gelven, M. (1983). A commentary on Heidegger’s being and time. DeKalb, Illinois: Northern Illinois University Press.  131 Grant, G. (1990). Elderly parents with handicapped children: Anticipating the future. Journal of Aging Studies, 4(4), 359—374. Guba, E.G., & Lincoln, Y.S. (1985). Effective evaluation: Improving the usefulness of evaluative results through responsive and naturalistic approach. San Fransisco: Jossey—Bass Publications. Kaufman, AV., Campbell, V.A., & Adams, J.P. (1990). A lifetime of caring: Older parents who care for adult children with mental retardation. Community Alternatives International Journal of Family Care, 2(1), 38-53. Kazak, A.E. (1987). Families with disabled children: Stress and social network in three samples. Journal of Abnormal Child Psychology, 15(1), 137—146. Lincoln, Y.S., & Guba, California: Sage.  E.G.  (1985).  Naturalistic inquiry.  Lutzer, V., & Brubaker, T. (1988). Differential respite needs of aging parents of individuals with mental retardation. Mental Retardation, 26, (1), 13-15. Martin, S. (1981). Exploring “chronic sorrow” as a possible parental response to having a child with a mental handicap: some implications for professional practice. Unpublished master’s thesis. University of British Columbia. Vancouver, B.C. Minnes, P.M. (1988). Family resources and stress associated with having a mentally retarded child. American Journal on Mental Retardation, 93, (2), 184-192. Morse, J. (1986). Quantitative and qualitative research: Issues in sampling. In P.L. Chinn (Ed.), Nursing Research Methodology: Issues and Implementation (pp. 181-193). Maryland: Aspen Publishers. Ornery, A. (1983). Phenomenology: a method for nursing research. Advances in Nursing Science, .(2), 49—63. Pallikkathayil, L., & Morgan, S. (1991). Phenomenology as a method for conducting clinical research. Applied Nursing Research, 4.(4), 195—200. Plummer, K. (1983). Documents of life: An introduction to the problems and literature of a humanistic method. London: George Allen & Unwin.  132 Rempel, G. of parents their baby University  (1993). Knowing but not knowing: The experience who knew about their baby’s heart defect before was born. Unpublished master’s thesis. of British Columbia. Vancouver, B.C.  Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27—37. Sandelowski, M. (Speaker). (1994). Uncovering the work of qualitative research: Problems, solutions and visions [Cassette Recording]. International Nursing Research Conference, Vancouver, B.C.: Kennedy Recordings. Schreiber, M. (1990). Aged parents of disabled and dependent adults. The Jewish Social Work Forum, (26), 38-43. Seltzer, M.M., & Krauss, M. (1989). Aging parents with adult mentally retarded children: Family risk factors and sources of support. American Journal on Mental Retardation, 94(3), 303—313. Smith, G.C., & Tobin, S.S. (1989). Permanency planning among older parents of adults with lifelong disabilities. Journal of Gerontological Social Work, 14, (3/4), 35—59. Summers, J., Behr, S., & Turnbull, A. (1989). Positive adaptation and coping strengths of families who have children with disabilities. In G. H. S. Singer & L. K. Irvin (Eds.). Support for Careqiving Families (pp. 27-40). Oregon Research Institute, Eugene: Paul Brookes. Turnbull, A.P., Summers, J., & Brotherson, M. (1986). Family lifecycle: Theoretical and empirical implications and future directions for families with mentally retarded members. In J. J. Gallagher & P. Vietze (Eds.). Families of handicapped persons (pp. 45-63). Baltimore: Paul Brookes. Wilgosh, L., Waggoner, K., & Adams, B. (1988). Parent views on education and daily living concerns for children with mental handicaps. Australia and New Zealand Journal of Developmental Disabilities, j4, (3/4), 255—259.  133  APPENDIX A Demographic Data  33..  Demographic Information  1.  Age of Mother  2.  Age of Adult Child:  3.  I would describe my child’s disability as: mild, moderate, severe  Father  134  APPENDIX B Agency Approval  ( L 3 Jc  N Planned lifetime Advocacy Network  November 26, 1993  I 1)-i 39() (.t na du \‘:iv liui-nah l(. Canada VG IC-i —  Tel: 604 -i30-0S66 Fax: 604 -i39-0{)1  Chair of U.B.C. Behavioral Science Screening Committee Office of Research Services Room 323, IRC Building 2194 Health Sciences Mall Vancouver, B.C. V6T 1Z3 Dear Committee: Planned Lifetime Advocacy Network (PLAN) gives Joni Petrica permission to conduct her research project “A Phenomenological Study On the Experiences of Aging Parents Caring For Their Adult Son/Daughter With a Disability” under our auspices. We have received and reviewed a written copy of her research intent and are satisfied her research goals will contribute positively to PLAN’s efforts. We understand Joni Petrica is the sole researcher and her research supervisor is Dr. David Freeman from the University of British Columbia, School of Social Work. Yours truly,  Etmanski Executive Director  AE/ss  135  APPENDIX C Initial Contact Letter  pLAN  November 26, 1993 planned lifetime Advocacy Network ) Canada \Vav IC: Canada \ S(; 1 C; -+ —  604’ -139-95()6 Tel Fax: 604 49-7OOl  (Addressee) (Addressee) (Addressee) (Addressee) Dear (parent): Over the past 18 months Planned Lifetime Advocacy Network has worked with Joni Petrica who is currently attending UBC’s School of Social Work. She has focused many of her student projects and papers on parents caring for their adult Sons and daughters with mental handicaps at home. We have benefited from a research paper she has already done. I am impressed with her maturity and sensitivity. Joni is currently conducting a research study under the direction of David Freeman as part of the requirement to obtain a Masters of Social Work. She would like to interview you about your experiences as a parent of a child with a mental handicap. PLAN is pleased to support Ms. Petrica’s efforts. Enclosed is a letter from her which explains the purpose of the study and requests your permission. If you are willing to participate in the study or would like further information please contact me or Al Etmanski at 439 9566. -  Yours truly,  Jack Collins President  JC/ss ends.  THE UNIVERSITY OF BRITISH COLUMBIA l35b  -  School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2 Tel: (604) 822-2255  Fax: (604) 822-8656  Notification Requesting Participation THE EXPERIENCE OF AGING PARENTS CARING FOR THEIR ADULT SON OR DAUGHTER WITH A DISABILITY  Dear Parent: My name is Joni Petrica. I am presently in the Masters of Social Work program at the University of British Columbia. I would like to invite you to participate in a research study seeking to understand the experiences of aging parents caring for their adult son or daughter with a disability in the community. My experience working with families who care for a child with a disability has made me aware of the invaluable information parents can contribute to our understanding of the impact a child with a disability has on parents and families, and, to date, little research has been done to learn from parents’ experiences. Most of the information that is available focuses on young families. The information from this study will assist social workers to understand the experience of caring for a child with a disability from the perspective of older parents in order to better provide service to parents and families. The research will be conducted through approximately 2 -3 in-person interviews which will take about one to two hours each. Interviews will be audiotaped to ensure accuracy, and will be erased upon completion of this project. All information that you choose to provide will be held in confidence by the researcher, and all individual identifying information will be omitted in the final document.  The study will involve interviewing you about your experience of being a parent of a  child with a disability. Your participation in this project is completely voluntary, you may choose to withdraw at any time, and/or not to answer questions. Your decision, or information shared with the researcher will in no way affect services you may be receiving now or in the future at Planned Lifetime Advocacy Network (PLAN), or any other agency and/or association connected with PLAN.  1 of 2  Within 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 you may 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 free to call me at 263-4537. You may also contact my faculty advisor, Dr. David Freeman, at 822-5030 Thank you for your time. .  Sincerely,  Joni Petrica  2 of 2  136  APPENDIX D Participant Consent Form  ; —  THE UNIVERSITY OF BRITISH COLUMBIA  School of Social Work 2080 West Mall Vancouver, B.C. Canada V6T 1Z2  _r  Tel: (604) 822-2255  Fax: (604) 822-8656  Interview Consent Form Title of the Study: A PHENOMENOLOGICAL STUDY OF THE EXPERIENCE OF AGING PARENTS CARING FOR THEIR ADULT SON OR DAUGHTER WITH A DISABILITY. Researcher:  JONI PETRICA, B.Ed., B.S.W. Masters of Social Work Student University of British Columbia  The purpose of this study is to discover and describe the experience of aging parents who care for their adult son or daughter with a disability in the community. I hereby consent to approximately 2 3 in-person interviews (of about 1-2 hours each) conducted by Joni Petrica in connection with her research study. Should I have any questions or concerns during this research project, I may contact 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 no way affect my present or future involvement with Planned Lifetime Advocacy Network (PLAN), or any other agency and/or association connected with PLAN. Further, I consent to the interview being AUDIOTAPED; and that the audiotape will be erased upon completion of this research project. All information that I choose to provide will be held in confidence by the researcher, and all individual identifying information will be omitted in the final document. I will have access to the findings upon completion of this study. My signature is acknowledgment of receipt of a copy of this interview consent form and to participate in this study. Respondents Signature: Interviewer Signature:  Date: Date:  -  137  APPENDIX E Interview Guide  138 Questions Thank you for taking the time to talk with me. I believe it is very important and helpful to hear from parents such as yourself about the experience of raising a child with a disability, and I appreciate you taking the time to speak to me about your experience raising (name of child). 1.  Can you tell me about yourself before (name of child) was born. Probe:  2.  (1)  Who was around?  (2)  Who was in your family?  (3)  What was happening in your life?  When (name of child) was born, could you tell me what it 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?  How did it influence your idea about being a (5) mom/dad? (6)  How did your family/friends support you?  (7) What do you think you’ve learned from raising your child? 3.  Raising a child with a disability is a unique experience. Can you tell me what memories come to mind 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) 4.  What has shaped your experience?  When you think back over the years, are there any particular experiences that have had the most impact on you? Probe: (1)  How did it influence you?  (2) Can you describe how you feel you have been changed? 5.  When you think about the future, what comes to mind? Probe: Do you have any particular feelings or thoughts (1) when 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 what advice you would give young parents who are raising a child with a disability? Probe: As (child’s name) parent, what do you feel (1) particularly good about in having raised (name of child)? What do you wish you would have done (2) differently?  140  APPENDIX F Ethical Approval  The University of British Columbia Office of Research Services Behavioural Sciences Screening Committee for Research Involving Human Subjects  I 4D-  Certificate of Approval PRINCIPAL INVESTIGATOR  DEPARTMENT  Freeman, D.  Social Work  NUMBER  B93-0791  INSTITU11ON(S) WHERE RESEARCH WILL BE CARRIED OUT  UBC Campus CO-INVESTIGATORS:  Petrica, 3., Social Work SPONSORING AGENCIES  A phenomenological study of the experience of aging parents caring for their adult son or daughter with a disability APPROVAL DATE  JAN1O1994  TERM (YEARS)  AMENDED  The protocol describing the above-named project has been reviewed by the Committee and the experimental procedures were found to be acceptable on ethical grounds for research involving human subjects.  Dr. R. Corteen or Dr. I. Franks, Associate Chairs  ‘  D’k. D.Spratley/ Director, Research Services  This Certificate of Approval is valid for the above term provided there is no change in the experimental procedures  141  APPENDIX G The Experience  142 THE EXPERIENCE OF AGING PARENTS CARING FOR THEIR ADULT CHILD WITH A DISABILITY: PHASES OF ADJUSTMENT  FIRST PHASE OF ADJUSTMENT: INITIAL REALIZATION OF THE DISABILITY  PARENTS’ *  EXPERIENCE  The Parents’ Response —  “What have I done?” loss grief and shock  *  Excessive Caregiving Demands  *  The Process of Acceptance Begins  SOCIAL WORK INTERVENTION *  Provide:  information regarding child’s disability and the resources available to parents —  emotional support and guidance to parents! family —  empathy regarding impact of disability on parents! family -  recognition/ validation of parent’s stress, exhaustion, fears and worries —  provide professional! peer oppor tunities for parents to discuss feelings and tell their stories -  143 SECOND PHASE OF ADJUSTMENT: PARENTS’ MISSION PARENTS’  EXPERIENCE  SOCIAL WORK INTERVENTION  *  Extensive Caregiving Demands: Managing Day-To-Day  *  The Mission: for Help  Parents’  Search  Provide information on services/ programs, professionals, etc. to assist parents in: *  developing child’s potential -  —  *  Formal supports:  “No choices”  Multiple Roles of Parents  —  -  —  —  Parents’ role as teacher Parents’ role as physical therapist Parents’ role as monitor Parents’ role as facilitator of information to professionals  relieving stress/pressure of care—giving -  * Minimize bureaucratic obstacles  Where programs / services do not exist, facilitate their development *  Assist parents with advocating on behalf of their child *  *  The Process of Acceptance Continues  —  Parent’s wholistic perspective: a bridge to acceptance  Validate/ affirm parents’ diligence & commitment to the care of their child *  144 PARENTS’ EXPERIENCE *  Acceptance Continues  SOCIAL WORK INTERVENTION * Allow parents to tell their stories:  facilitate parents’ understanding and meaning of their experience by listening to, empathizing with, & validating their experiences -  Adopt a who list i c perspective toward the child with a disability and parents’ efforts to integrate the child into the family/community: *  recognize inherent worth of child —  focus on strengths & abilities of child —  balance an understanding of child’s limitations with his/her strengths —  Educate professionals working with child/family the importance of adopting a who list i c perspective, including: *  145 PARENTS’  EXPERIENCE  SOCIAL WORK INTERVENTION  recognizing the impact on parents/families of implementing demanding & costly treatment regimes —  Provide resources to parents, which encourage peer support & interaction, and results in advocacy, development of services & psychosocial support *  THIRD PHASE OF ADJUSTMENT: FUTURE PLANNING WHO CARES FOR MY CHILD WHEN I DIE? -  PARENTS’ *  EXPERIENCE  Facing Their Adult Child’s Uncertain Future  —  Facing one’s mortality Continuing the role as monitor  SOCIAL WORK INTERVENTION Provide an opportunity for parents to discuss their fears & concerns through professional & peer support *  Provide anticipatory guidance to assist parents in facing their mortality and preparing for their child’s future *  146 *  Preparing to ‘Let Go’: Developing a Social Network  *  Acceptance of One’s Self and One’s Self as a Parent  *  Acceptance of One’s Life as it Has Been  developing social support network (comprised of family! friends) around the adult child with a disability to assume parents’ role as monitor of their child’s care  *  From the Everyday Experience of Caregiving to the Existential Meaning  * Prepare for estate planning, wills and appro priate trustees  Provide information, direction and support to parents in order to develop formal! informal support systems that may assume primary care— giving when parents are no longer able to do so: *  —  providing practical support: respite for parents; independent living options for the adult child -  * Facilitate parents’ life review by listening to parents’ stories  147 help parents’ identify & validate their skills, achievements, successes & diligence as parents to a handicapped child —  


Citation Scheme:


Citations by CSL (citeproc-js)

Usage Statistics



Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            async >
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:


Related Items