How do adults with mild learning disabilities experience bereavement and grief?: a qualitative exploration

Background: The vast majority of research into the experiences of people with learning disabilities (LD) in regard to bereavement and grief involves the collection of data from second-hand sources, or via quantitative measures. This qualitative study aimed to explore the lived experiences of bereavement and grief in a group of adults with mild LD. Methods: Semi-structured interviews were carried out with 13 adults (aged 20-72 years) with mild LD who had experienced bereavement within the last 3 years. Data were analysed using interpretative phenomenological analysis (IPA). Results: Qualitative analysis highlighted 4 themes which mediated individuals’ experience of bereavement and grief: (1) Intra- and inter-personal experiences, (2) Core beliefs about life and death, (3) Level of inclusion, and (4) Continuing relationship with the deceased. Participants also showed an ability to evaluate their lived experience in terms of having been helpful or otherwise. Conclusions: Overall, the findings suggest that individuals with mild LD experience bereavement and grief in a manner much like the general population, in that they experience a wide range of oscillating emotions, are subject to the same (if not more) losses, and hold similar values when it comes to maintaining their relationship with the deceased. The study endorses the role of clear and open communication, the facilitation of informed choice, and a culture of inclusion.