'The oxygen of shared experience': exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias

被引：5

作者：

Harding, Emma ^{[1
]}

Rossi-Harries, Samuel ^{[1
]}

Alterkawi, Shaima ^{[1
]}

Waddington, Claire ^{[1
]}

Grillo, Adetola ^{[2
]}

Wood, Olivia ^{[1
]}

Brotherhood, Emilie V. ^{[1
]}

Windle, Gill ^{[3
]}

Sullivan, Mary Pat ^{[2
]}

Camic, Paul M. ^{[1
]}

Stott, Joshua ^{[4
]}

Crutch, Sebastian J. ^{[1
]}

机构：

[1] UCL, UCL Queen Sq Inst Neurol, Dementia Res Ctr, London, England

[2] Nipissing Univ, Fac Educ & Profess Studies, Sch Social Work, Nipissing, ON, Canada

[3] Bangor Univ, Dementia Serv Dev Ctr, Bangor, Wales

[4] UCL, Dept Clin Educ & Hlth Psychol, UCL Div Psychol & Language Sci, London, England

来源：

AGING & MENTAL HEALTH | 2023年 / 27卷 / 10期

基金：

英国经济与社会研究理事会; 英国科研创新办公室;

关键词：

Dementia; caregivers; peer support; social support; qualitative research; YOUNG-ONSET DEMENTIA; ALZHEIMERS-DISEASE; PREVALENCE; SERVICES;

D O I：

10.1080/13607863.2023.2194848

中图分类号：

R592 [老年病学]; C [社会科学总论];

学科分类号：

03 ; 0303 ; 100203 ;

摘要：

ObjectivesTo 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).MethodsTwenty-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).ResultsMost 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.ConclusionsThis 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.

引用

页码：1912 / 1928

页数：17