Bereavement Support for Adults with Learning Disabilities: An Inclusive Participatory Study

  • Victoria Mason-Angelow

Student thesis: Doctoral ThesisDoctor of Philosophy (PhD)


Background: Bereavement support for people with learning disabilities in the UK has been described as ‘at best inconsistent and at worst non-existent’ (Read and Elliott, 2007, p.177). Much research in this area suggests that frontline support staff are responsible for this situation as they are unable to identify the impact bereavement has upon those they support (such as Arthur, 2003; Blackman, 2008; Gilrane-McGarry and Taggart, 2007). As a result, bereavement support training has been recommended for frontline staff in order to improve practice (such as Reynolds et al, 2008; Handley and Hutchinson, 2013). However, this recommendation is based on limited empirical evidence, which does not provide support workers with a voice in the literature. The research presented in this thesis aimed to rectify this situation by exploring this issue from the perspective of support workers and PAs themselves.

Method: An inclusive participatory approach was used to carry out this research. A group of people with support experience and a group of people with learning disabilities were members of the research community who conducted the research. This led to a concurrent approach to data collection being employed, with thirteen semi-structured face-to-face interviews carried out with support workers and PAs in the UK, followed by an online questionnaire completed by forty-four learning disability professionals in the same region.

Findings: Support workers and PAs are able to identify the impact bereavement has upon the people with learning disabilities they support. However, they are faced with a dilemma when it comes to providing support at these times due to the legal (HMSO, 2014; Skills for Care for Health, 2013) and organisational policies which govern their professional conduct. Support staff express an instinctive desire to provide bereavement support, but the services they work for widely dissuade this in preference for professional counselling and therapy services. Due to the lack of such services in the UK, many support staff express concern and frustration at the commodification of their emotions the services they work for expect of them at such a difficult time. This not only leaves support staff experiencing a crisis of professional identity but leaves many people without any support when someone they love dies.
Date of Award23 Jan 2019
Original languageEnglish
Awarding Institution
  • The University of Bristol
SupervisorVal J Williams (Supervisor) & David W F Abbott (Supervisor)

Cite this