| Popis: |
The purpose of this thesis was to examine well-being among family carers and adults with an intellectual disability (ID). In a series of four studies, I examined 1) parents’ experiences and feelings during the process of seeking out-of-home accommodation for their adult child with ID, 2) how adults with an ID who live at home report on their own well-being, 3) the physical and psychological health of family carers and 4) factors related to the process of moving out of the family home in adulthood. Chapter 1 provides a background picture of adulthood with an ID, examining health and support issues and what has been achieved in terms of policy and strategies in the UK. Estimations of future need for adults with ID have also been explored. Adopting a qualitative design, Chapter 2 examines the experiences of families seeking out-of-home accommodation for their relative with ID. Little attention has been given to the first-hand experiences of families as they undertake this process. Thematic analysis identified implicit themes in the data, which included families’ reasons for seeking housing and experiences within a process which families reported as stressful and frustrating. In Chapter 3, secondary data analysis was undertaken on a large national survey of adults with an ID in England (Emerson, Malam, Davies, & Spencer, 2005). An examination of adults’ self-reported health and well-being was undertaken exploring associations with living circumstances. Results of multivariate modelling showed those who lived at home were more likely to report better well-being and health. The latter, however, only when their support needs were lower. Results highlight the important role of families to the emotional development of a relative with ID, whilst also highlighting potential disparities in access to health care for these individuals. Chapter 4, a large scale quantitative project was undertaken to examine both positive and negative aspects of the caregiving experience and explore the self-reported health and well-being of family carers co-residing with an adult relative with ID. Families in the UK report experiencing poorer health outcomes than non-caregivers. Psychological resources (coping and support received) were associated with better psychological adjustment and more positive gains from the caregiving role. Overall factors associated with physical health appear to differ from those associated with psychological health. Further research with more representative non-caregiving peers is needed. Chapter 5 adopted a prospective design to examine the dynamics of placement tendencies of families of adults with ID and factors associated change in placement decisions and behaviours. The majority of families who had placed their relative out-of-home had initially recorded higher scores on the Placement Tendency Index (PTI, Blacher, 1990). The rate of placement of adults appeared to occur more rapidly than previously demonstrated with children. This may result from the more normative context of seeking a placement for an adult relative. Unadjusted ORs indicated only families’ coping strategies were significantly associated with continued home care. Other factors were not significantly related to changes in PTI scores. Changes in placement decision of families of adults with ID may be more affected by factors external to the family, such as availability of appropriate accommodation. Findings from these empirical studies were discussed in relation to their implications to policy and practice and recommendations for future research were made. |
