{"title":"角色-需求框架：反思对全球南方和全球北方阿尔茨海默氏症非正规护理者的支持","authors":"Fauzia Knight, Damien Ridge, Catherine Loveday, Wendy Weidner, Jannice Roeser, Candida Halton, Tina Cartwright","doi":"10.1002/gps.6141","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Objective</h3>\n \n <p>Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the ‘coping-effectiveness’ framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>We identified a framework of four cross-cultural caring approaches with implications for support: (1) <i>Empathising</i>, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) <i>Organising</i>, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) <i>Non-identifying</i> caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) <i>Reluctance</i>, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Our findings move beyond the ‘coping-effectiveness’ framework of support to suggest a novel ‘role-needs’ framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.</p>\n </section>\n </div>","PeriodicalId":14060,"journal":{"name":"International Journal of Geriatric Psychiatry","volume":null,"pages":null},"PeriodicalIF":3.6000,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/gps.6141","citationCount":"0","resultStr":"{\"title\":\"A Role-Needs Framework: Rethinking Support for Informal Caregivers for Alzheimer's Across the Global South and Global North\",\"authors\":\"Fauzia Knight, Damien Ridge, Catherine Loveday, Wendy Weidner, Jannice Roeser, Candida Halton, Tina Cartwright\",\"doi\":\"10.1002/gps.6141\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Objective</h3>\\n \\n <p>Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the ‘coping-effectiveness’ framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>We identified a framework of four cross-cultural caring approaches with implications for support: (1) <i>Empathising</i>, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) <i>Organising</i>, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) <i>Non-identifying</i> caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) <i>Reluctance</i>, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Our findings move beyond the ‘coping-effectiveness’ framework of support to suggest a novel ‘role-needs’ framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.</p>\\n </section>\\n </div>\",\"PeriodicalId\":14060,\"journal\":{\"name\":\"International Journal of Geriatric Psychiatry\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.6000,\"publicationDate\":\"2024-09-17\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/gps.6141\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Geriatric Psychiatry\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/gps.6141\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"GERIATRICS & GERONTOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Geriatric Psychiatry","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/gps.6141","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GERIATRICS & GERONTOLOGY","Score":null,"Total":0}
A Role-Needs Framework: Rethinking Support for Informal Caregivers for Alzheimer's Across the Global South and Global North
Objective
Caregivers play an essential role in supporting people with Alzheimer's disease globally. User-informed research is vital to developing trans-cultural guidelines for dementia support organisations. While coping strategies of caregivers are well researched, the ‘coping-effectiveness’ framework falls short of representing all caregiver needs. Our aim was to develop a robust and inclusive, globally applicable framework of caregiver-informed support needs.
Methods
In partnership with Alzheimer's Disease International and Roche, we conducted qualitative online semi-structured interviews with 34 family caregivers from the Global North (UK, US) and Global South (Brazil, South Africa) in the COVID-19 context. Participant-generated photographs helped encourage discussions of hidden contextual issues. Iterative inductive narrative analysis of interviews and photographs was carried out with input from global and national charity and industry sectors.
Results
We identified a framework of four cross-cultural caring approaches with implications for support: (1) Empathising, using emotion-focused strategies to develop strong expertise and coping skills, with time specific information, psychosocial and peer support needs. (2) Organising, using problem-focused strategies, with strong narratives of expertise and advocacy which benefited from early structured information and professional confirmation. (3) Non-identifying caregiving, where daily aspects of caring occurred without specialist knowledge and expertise, and caregivers sought assistance in managing disease-related support. (4) Reluctance, where struggling with unwanted caring responsibilities meant caregivers looked to professionals to carry out daily care.
Conclusion
Our findings move beyond the ‘coping-effectiveness’ framework of support to suggest a novel ‘role-needs’ framework. Our approach supports inclusive ways of tailoring support to fit individual caregiver circumstances globally.
期刊介绍：
The rapidly increasing world population of aged people has led to a growing need to focus attention on the problems of mental disorder in late life. The aim of the Journal is to communicate the results of original research in the causes, treatment and care of all forms of mental disorder which affect the elderly. The Journal is of interest to psychiatrists, psychologists, social scientists, nurses and others engaged in therapeutic professions, together with general neurobiological researchers.
The Journal provides an international perspective on the important issue of geriatric psychiatry, and contributions are published from countries throughout the world. Topics covered include epidemiology of mental disorders in old age, clinical aetiological research, post-mortem pathological and neurochemical studies, treatment trials and evaluation of geriatric psychiatry services.
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