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A lifelong commitment: parental memories and reflections prompted by the impending discharge of long-stay patients with learning disabilitiesThis paper is based on a series of interviews with parents and relatives of adults with learning disabilities who are expected to be resettled from the long-stay hospital, in which they have spent much of their lives, by the year 2000. A life story approach was used to explore these parents' feelings and experiences over time, and the six key themes that emerged were significant to all of the informants: the realization that a learning disability existed; confusion over diagnosis and prognosis, the strain of caring; the eventual admission of their relative to institutional care; difficulty in handling the transition of their child to adulthood and the enduring nature of parental involvement, which had often spanned several decades and sometimes lasted more than 50 years. Four key reasons for the maintenance of parental contact were identified, together with four factors that had acted as disincentives. It was concluded that the sense of marginalization experienced by these parents at the point of impending institutional discharge mirrored their feeling of exclusion around the time of admission, reflecting continuing confusion, conflict and uncertainty over parental roles, rights and responsibilities in relation to adults with learning disabilities.
Journal of Intellectual Disabilities, Vol. 2, No. 1,
16-22 (1998) |
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