‘When Your Child Dies You Don’t Belong in That World Any More’– Experiences of Mothers Whose Child with an Intellectual Disability has Died

Abstract

Background Individuals with intellectual disability are at higher risk of premature death compared with individuals without intellectual disability, and therefore parents of people with intellectual disability are more likely to outlive their children. However, there has been relatively little research investigating the bereavement experiences of parents of deceased children with intellectual disability.Method Semi‐structured interviews were used to explore the experiences of nine mothers whose child with intellectual disability had died. The transcripts were analysed qualitatively using Interpretative Phenomenological Analysis.Results Five themes emerged from the analysis: loss, benefit finding, coping, sources of support and medical relationships. An analysis of the accounts indicated similarities and differences between the experiences of the mothers. In particular, continuing in their caring role by working within the world of intellectual disability following the death of their child was important to all of the mothers. Support from similarly bereaved parents was the most useful source of support, although it was not always readily accessible.Conclusions Implications for theory and practice are described including suggestions that service providers should aim to maintain links with families after the death of their child, a parent‐to‐parent programme that enables parents to contact others in a similar situation might be beneficial, and further research into the functions of coping strategies and supports in loss would be worthwhile.