Eighteen and up: researching disability and family quality of life in transition
Date
2017-12-13
Authors
Butler, Kierstyn
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Abstract
This mixed methods study focused on how parents and primary caregivers perceive their family quality of life (FQOL) while a family member with intellectual and developmental disabilities (IDD) transitions from adolescence to adulthood. A modified version of the Family Quality of Life Survey-2006 Short Version: Main caregivers of people with intellectual and developmental disabilities (I. Brown et al., 2006) queried families’ perceptions and experience of their greatest strengths and supports, as well as their greatest needs and challenges in maintaining their family quality of life through this period of transition. In-depth individual interviews were conducted to further investigate the survey results and showed that participants struggled with a lack of support from others who did not share the experience of having an IDD family member while at the same time, they noted the high value they attribute to the support they receive from other families within the disability community who also have family members with IDD. Participants also noted the lack of support they receive from disability services and expressed the importance of finding opportunities for fulfilling their own needs, as well as the needs of other family members. These opportunities are reported as being essential to enhancing a variety of life domains, suggesting the need for more support in areas of family centred development. The implications drawn from these findings contribute to the discussion of changing how we view the domain support from others and how we can provide families with more opportunities to pursue areas of their own interest either individually or as a family unit in order to improve and enhance their FQOL as their family member with IDD transitions into adulthood.
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Keywords
Family Quality of Life, Transition into adulthood, Intellectual and Developmental Disabilities