Harding, Emma;
Rossi-Harries, Samuel;
Alterkawi, Shaima;
Waddington, Claire;
Grillo, Adetola;
Wood, Olivia;
Brotherhood, Emilie V;
... Crutch, Sebastian J; + view all
(2023)
‘The oxygen of shared experience’: exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias.
Aging & Mental Health
10.1080/13607863.2023.2194848.
(In press).
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Abstract
OBJECTIVES: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD). METHODS: Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC). RESULTS: Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories - 'Experiential Support' and 'Community Support' - and novel support behaviours including 'Advocacy and Collective Action' and 'Uses Humour'. The SSBC code 'Relationship' appeared to be of central importance. CONCLUSIONS: This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.
| Type: | Article |
|---|---|
| Title: | ‘The oxygen of shared experience’: exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias |
| Location: | England |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1080/13607863.2023.2194848 |
| Publisher version: | https://doi.org/10.1080/13607863.2023.2194848 |
| Language: | English |
| Additional information: | © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. |
| Keywords: | Dementia, caregivers, peer support, qualitative research, social support |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10167747 |
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