Parents' accounts: Factors considered when deciding how far to involve their son/daughter with learning disabilities in choice-making

a r t i c l e i n f o There is limited literature on the processes of choice-making in families of young people with learning disabilities. This paper examines the factors considered by parents of young people with learning disabilities when deciding their own and their child's role in a range of significant choices (health, social care and education) about their child's life. The paper reports data collected from a sub-sample of 14 parents recruited from 11 families participating in a longitudinal (2007–2010) qualitative study based in England. The parents all had children with learning disabilities and participated throughout the study. Data were collected over three semi-structured interviews. Parents' accounts demonstrated a continuum of parental involvement ranging from young people being unaware a choice was taking place to young people being fully involved in choice-making. Parents did not always adopt the same approach to choice-making; different approaches to their own and their son/daughter's level of involvement emerged when parents discussed different choices. Five choice-making factors are presented. These factors were used by parents to guide their own and their child's level of involvement. Although young people's level of understanding was considered, it was not always the most important factor. Other factors were important and, at times, could be considered more important by parents. The other factors were: parents' views on the nature of the choice, protecting their child, parents' personal attitudes/beliefs and confidence in practitioner knowledge. Insights from these factors highlight some important practice issues when practitioners work with families of young people with learning disabilities making significant life-choices. Encouraging service users, including people with learning disabilities and their families, to make choices and take greater control of their lives is a key English health and social care policy and practice objective For people with learning disabilities, there are many well-rehearsed debates surrounding the importance of choice, for example, from the early ideas of normalisation theory (Wolfensberger, 1972) to broader social and psychological self-determination theories (such as, Willink, Widdershoven, van Schrojenstein Lantman-de Valk, Metsemakers, & Dinant, 2009). Increasing disabled people's choice and control is also an important part of the social model of disability (see for and is advocated by disabled people themselves. This has been recognised in English policy by such strategies as Valuing People (Department of Health, 2001, 2009) and the movement towards person centred planning (HM Government, 2007). Choice and choice-making opportunities are also important …