Sibling discourses of future planning for individuals with learning disabilities: An exploration of taboo

Abstract

Background: Given the enhanced life expectancy of individuals with learning disabilities, siblings are increasingly adopting caregiving responsibilities when parents are no longer able. Therefore, future care planning in families is significantly important; however, previous research highlights challenges with this process. To date, research has primarily focused on future planning from parents’ perspectives. This study explores how siblings talk about the future care planning process within the family context, attending specifically to taboo discourses. Materials and Methods: Twelve siblings of individuals with learning disabilities were interviewed about planning the future care of their brother and/or sister. The data were subsequently subject to discourse analysis. Results: Siblings were reluctant to engage in explicit future planning discussions, which drew on several taboo topics including death, conflict and obligation. Consequently, siblings employed multiple discursive strategies to evade, manage and negotiate troublesome talk. Conclusions: In addition to parents, siblings also pose a barrier to future planning. Avoidance of discussion may shield them from criticism and vulnerability, whilst also protecting familial relationships. Professionals need to recognise the challenges these conversations raise for siblings. They should endeavour to involve siblings, in order to facilitate open dialogue and collaborative future planning.