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

Abstract

Abstract 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.