Family Quality of Life When There Is a Child With a Developmental Disability

In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 3, Heft 4, S. 238-245

Abstract

Abstract  The conceptualization of individual quality of life is reasonably well established, and now family quality of life and intellectual disability is emerging as an important field of study. This article examines comparative family quality of life in three types of families: those with a child who has Down syndrome, those with a child with autism, and those of similar household composition but without a child with a disability. Data were collected using the Family Quality of Life Survey, which was sent to participating families, and by interviews with selected families on a follow‐up basis. Data from the 3 groups were analyzed in terms of quantitative and qualitative information. The needs and choices of families were contrasted in terms of the child's diagnosis. Findings showed that families' satisfaction and needs varied within the 9 quality of life domains assessed, raising questions of support and care and the ability of families to pursue desired goals. The authors suggest that there is a need to both identify and provide measures of care and support that would enable families to function at an optimum level within their home and community, so they may experience a quality life similar to that of families without a child with a disability.