A proposed study of the development of a model to inform practice when working with people with a learning disability who have experienced a bereavement: a grounded theory approach

Abstract

Background: Bereavement and loss can be a common experience for people with a learning disability (PwLD). Studies exploring grief in PwLD through the perceptions of carers have highlighted that carers often attribute possible grief reactions as symptoms of their learning disability. People with a learning disability are often marginalised, they face health inequalities, and grief can be unrecognised in this population. Theoretical models of bereavement have been developed to explain experiences of bereavement for the general population, but no studies have been conducted directly interviewing PwLD about their experiences of bereavement with the aim to develop a theoretical model. This proposed study aimed to develop such a model to inform clinical practice for learning disability services who work with PwLD who have experienced bereavement.
Method: The proposed study aimed to use a qualitative, constructivist grounded theory approach for data collection and analysis, with the aim of developing a theory which explains bereavement experiences in PwLD. The design and plan for analysis of the proposed study is presented. As the proposed study could not be conducted, a systematic review and synthesis was conducted with the aim of answering the question ‘What are the grief reactions in PwLD?’
Results: Hypothetical results of the proposed study are not provided due to the nature of the qualitative methodology, but an outline is provided with regards to how the results would have been presented. The systematic review and synthesis highlighted the common emotional, behavioural, somatic, and cognitive grief reactions of PwLD and these reactions are conceptualised in a theoretical model. The themes of ‘Emotional and Physical Pain’, ‘Emotional Paralysis’ and ‘Yearning for the Deceased’ appear particularly prominent in this population. Through data synthesis, factors that may influence grief reactions in PwLD were also conceptualised in a theoretical model. These factors include what can help PwLD when they experience a bereavement such as spiritual beliefs, recognition and inclusion regarding grief and funeral rituals, and the social sharing of grief. Factors which may hinder the grief journey for PwLD include the silencing of PwLD as mourners, their relationship to the deceased, and the continuing and perpetuating nature of loss.
Conclusions: The systematic review and synthesis highlights how PwLD can experience grief in the context of theories of bereavement in the general population, but also how they are vulnerable to risk factors for complicated grief. Furthermore, discussion of the findings of the systematic review in the context of the impact of the current COVID-19 pandemic, highlights how this population can experience further disenfranchisement and loss through the national lockdowns, restrictions, bereavement, and health inequalities. The findings are discussed in relation to clinical implications and how professionals and carers support PwLD through bereavement, with consideration of the COVID-19 pandemic and areas for future research.

Date of Award	2021
Original language	English
Awarding Institution	Teesside University
Supervisor	Ash Summers (Supervisor)