A Narrative Enquiry of Experienced Family Carers of People with Dementia Volunteering in a Carer Supporter Programme

Abstract

Whilst positive and negative aspects of general volunteering have been noted in the literature, little is known about the experience of volunteering to provide peer support to carers of people with dementia. The present study explored the impact of participating in a carer supporter programme in the context of previous caring experiences. Eight carer supporters, who had participated in the programme for at least 5 months, took part in semi-structured interviews to elicit rich, extended narratives of their experiences. Narrative analysis of the interview transcripts covered structural, thematic and wider socio-cultural components. The results indicated that most carer supporters naturally reflected on the positive impact of having shared experiences with the newer carers. Emotional and practical gains from participating in the programme were highlighted, as well as a greater sense of connection with others, extending to a wider social and organisational network. However, carer supporters also reflected on the negative emotions that could be evoked. The findings of the study indicate that the carer supporter role has potential to facilitate new roles, activities and social identities, but participation needs to be considered in relation to potentially stressful transitional points throughout the caring career. Role definition issues also need further consideration.

Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial

“…However, we did not see the REMCARE finding of increased anxiety in carers receiving reminiscence therapy 4. Instead, our qualitative evidence28 29 aligns with other evidence that peer support and reminiscence therapy are valued and enjoyable activities 30. Previous carer intervention research has received criticism for not studying impact on people with dementia.…”

The impact of volunteering on the volunteer: findings from a peer support programme for family carers of people with dementia

“…The quantitative findings from this study can be compared with qualitative insights from a recently published narrative enquiry into the volunteer peer supporters' experiences (Brooks et al . ). The participating CSs described both positive gains that are reflected in the general volunteering literature such as confidence, a sense of pride, enhanced self‐esteem and social connections.…”

“…An important issue for the volunteers was a sense of connectedness with the person they were supporting, and a sense of ‘getting something back' from the relationship (Brooks et al . ). This might be easier when volunteers are matched with carers who are also psychologically well, and the psychological health of the supported carer might influence volunteer well‐being over time.…”

To support and to be supported. A qualitative study of peer support centres in cancer care in Norway

“…Brooks et al explored emotional gains among peer supporters from participating in such programs, and found higher confidence, pride and enhanced self-esteem, as well as a greater sense of connection with others [20]. However, supporters also reflected on the negative emotions that could be evoked, and the importance of a clear understanding of roles.…”