Family quality of life in the context of aging and intellectual disability
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AbstractFamilies are an important source of support for persons with an intellectual disability who, as a group, are experiencing increased longevity due to better health and social care as are their family caregivers. Little Canadian research exists, however, to guide policy and service provision for these families. Nonetheless, a shift in social policy and service delivery as well as demographic changes has elevated the importance of family caregiving in many countries. The purpose of this study was to explore family quality of life from the perspective of older-aged parents, siblings, and adults with an intellectual disability. The study took a mixed methods approach with a qualitative theoretical orientation to maximize data collection in a relatively new field of study. All participants were involved in an interview or focus group, and parents and siblings were also asked to complete a survey questionnaire. Participants reflected on family life in retrospect, made comments on the present, and gave a preview of the future from their perspective. The study is rich in detail and illustrates important aspects of family quality of life as perceived by participants. Family quality of life was described in terms of relationships and in reference to events that were perceived to have had an impact on those relationships. Issues raised encompass variability in family relations and experiences; the enduring nature of these relationships; the blend of positive perceptions alongside family challenges; and factors that seem to influence relations between families and services. The interactive nature of the family, individual and social environment comes through in the perceptions held by participants and in what seems to maintain, enhance or challenge family quality of life. The positive attributes revealed in the study contribute to the information and question base families and service providers should now about as they work towards maintaining and enhancing quality of life. This may help support both the adult with the intellectual disability as well as other aging family members. The study's methodology has advantages and limitations that are discussed yet offers direction for further study. Recommendations for future research and policy and practice are made based on findings.
Bibliography: p. 293-318