Bereavement and loss support for adults with learning disabilities: An exploratory study using Photovoice

Abstract

Background: Loss and bereavement are devastating life experiences for all human beings belonging to any social group, and adults with learning disabilities are not exempt from the effects of loss. Recent research has shown that adults with learning disabilities understand loss and bereavement; however, there is a lack of empirical evidence to show what adults with learning disabilities believe is useful for them to cope with loss and bereavement. Literature in this field suggests that adults with learning disabilities have been generally treated as subjects in research in the field of loss and bereavement and that most of this research has been based on case studies, observations, and other people’s perspectives. This qualitative research study aims to engage bereaved adults with learning disabilities as active members in research using Photovoice (a participatory methodology using photography and photographs for community-based research), to explore the experiences of loss in their lives and their perceptions of support available in the local area (Staffordshire, UK).

Methods: A preliminary Photovoice workshop was organised for 10 bereaved adults with learning disabilities - the participants of the current research - in order to provide ethical and technical training for using a camera; engage them creatively to participate in research; and provide information on the photographs they would subsequently take as part of this research. The Photovoice workshop was followed by 10 semi-structured interviews with adults with learning disabilities to identify the support available and accessed; the impact of both loss and support; and the coping strategies used following bereavement. Interviews were facilitated through discussion of participants’ photographs taken after the Photovoice workshops. Additionally, data were gathered from focus groups with advocates (who support people to speak up by discussing, understanding their issues and finding information about their situations and options available); focus groups with professional carers; and interviews with family carers, to explore key issues and support needs and roles in supporting bereaved adults at home, in an advocacy organisation, and in a care setting. In total 27 (10 bereaved adults with learning disabilities; eight advocates; six professional carers; and three family carers) participated in the current research. All data, including the photographs taken by participants, were analysed using Thematic Analysis.

Findings: The main themes emerging from the photographs taken by the bereaved adults with learning disabilities included people (the deceased family members; living family members; friends; personal assistants; support staff); a range of daily activities (such as drama; pottery; dance); and objects inside homes and outside. Thematic analysis of remaining data highlighted five main themes across the results, namely: (1) Multiple losses, (2) communications related to loss, (3) support and barriers to support, (4) impact of bereavement and (5) continuing bonds.

Conclusions: The experiences of bereaved adults with learning disabilities mirrored the usual ordinariness of types of loss as people without learning disabilities but illustrate differences in the support, communications and other events after loss. Most of these differences were owing to the stigma attached to the learning disability itself. Creative methods (such as Photovoice) together with clear information are beneficial to engaging adults with learning disabilities in research and enabling them to share their viewpoints around sensitive topics. Overall, the benefits of using Photovoice extended beyond engaging participants, teaching them skills and collecting data, but also in providing evidence of its success that bereaved adults with learning disabilities are able to share their viewpoints on difficult topics such as loss and bereavement with the support of photographs for future research involving vulnerable groups.

Note on terminology used: The acronym AWLD is used only in this thesis to refer to adults with learning disabilities. The author, however, does not encourage any type of labelling of this population.

Note on chapter 3: Some information focusing on the use of Photovoice in this chapter is part of a published article, reproduced with kind permission from the publisher ‘© Emerald Publishing’.