Turner, Helen; (2002) Parents' views of moves towards independence by their adolescent and young adult offspring with learning disabilities. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

Families supporting a young person with learning disabilities through the transition from child to adult services have been identified as one group of carers with priority needs (Department of Health, 2001a). While parents of young children with disabilities have received much attention, there is a dearth of literature concerning the needs of parents of adolescents and young adults with disabilities. They have rarely been considered even though their needs and difficulties may be very different from those of families with young children with disabilities (Dale, 1996). A better understanding of the needs of these parents is needed so that professionals and parents are able to work together as effectively as possible and to ensure that any support offered is appropriate to the needs of young people with learning disabilities and their families. A key aim of learning disabilities services under current policies is to support young people with learning disabilities in developing increasing independence and choice. In contrast, research has suggested that parents of such young people may struggle to promote their children's independence (e.g. Card, 1983; Urey and Viar, 1990). This study explored the views of parents regarding moves towards independence during adolescence as well as parents' experiences of the support offered by services during this stage. The study focussed on three key areas of independence namely 1.) attainment of adult roles 2.) relationships 3.) leaving home and the future. These three areas were chosen as they have been identified in the literature as areas where conflicts may arise between parents and professionals in relation to the promotion of independence versus continuing dependence (e.g. Darling, 1983; Urey and Viar, 1990). Semi-structured interviews were carried out with 14 parents who had a child with a learning disability between 18 and 25 years old. Interview transcripts were analysed utilising Interpretative Phenomenological Analysis (Smith, 1997). In addition, three quantitative measures were utilised to examine the impact of the young person's level of functioning, challenging behaviour and family resources and stress on parents' views and attempts to promote their children's independence. Parents highlighted the huge investment that they have in their child, possibly leading to conflict with professionals who may underestimate this. The majority of parents described a sense of shock and anger during the transfer to adult services due to lack of planning, lack of resources and changes in service ethos. They frequently appeared to experience intense dilemmas arising from concerns for their child's safety, juxtaposed with their awareness of their child's desire for more independence. The themes of vulnerability and risk of abuse were raised throughout. Parents were open to talking about their child's sexuality and said they would like more open discussion with professionals. High levels of challenging behaviour, perhaps surprisingly, appeared associated with higher levels of independence. Younger age of offspring, professional involvement of a family member with learning disability services and greater material wealth seemed to result in greater input from services and in turn higher levels of achieved independence. The hopes and fears of these parents had many similarities to parents of non-disabled children, but there were also a few striking differences. The implications for services are discussed, as are the limitations of the study.

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