A Role-Needs Framework: Rethinking Support for Informal Caregivers for Alzheimer's Across the Global South and Global North

IF 3.6 3区医学 Q2 GERIATRICS & GERONTOLOGY

International Journal of Geriatric Psychiatry Pub Date : 2024-09-17 DOI:10.1002/gps.6141

Fauzia Knight, Damien Ridge, Catherine Loveday, Wendy Weidner, Jannice Roeser, Candida Halton, Tina Cartwright

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引用次数: 0

Abstract

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.

Abstract Image

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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

目标在全球范围内，护理人员在为阿尔茨海默病患者提供支持方面发挥着至关重要的作用。以用户为基础的研究对于为痴呆症支持机构制定跨文化指南至关重要。虽然对照护者的应对策略进行了深入研究，但 "应对效果 "框架并不能代表所有照护者的需求。我们的目标是建立一个强大的、具有包容性的、全球适用的照顾者支持需求框架。方法我们与阿尔茨海默病国际组织和罗氏公司合作，在 COVID-19 的背景下，对来自全球北方（英国、美国）和全球南方（巴西、南非）的 34 位家庭照顾者进行了定性在线半结构式访谈。参与者生成的照片有助于鼓励对隐藏的背景问题进行讨论。对访谈和照片进行了迭代归纳式叙事分析，并听取了全球和国家慈善机构及行业部门的意见。结果我们确定了四种跨文化关爱方法的框架，这些方法对提供支持具有影响：(1) 共情，使用以情感为重点的策略，发展强大的专业知识和应对技能，满足特定时间的信息、社会心理和同伴支持需求。(2) 使用以问题为中心的策略进行组织，通过早期结构化信息和专业确认，对专业知识和倡导进行强有力的叙述。(3) 非识别性护理，即日常护理工作在没有专业知识和专门技能的情况下进行，护理人员在管理与疾病相关的支持方面寻求帮助。(4) 不情愿，在不情愿的护理责任中挣扎，这意味着护理者寻求专业人员来进行日常护理。结论我们的研究结果超越了 "应对效果 "支持框架，提出了一个新颖的 "角色需求 "框架。我们的方法支持在全球范围内根据照顾者的具体情况量身定制支持的包容性方法。

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来源期刊

International Journal of Geriatric Psychiatry 医学-精神病学

CiteScore

6.10

自引率

2.50%

发文量

168

审稿时长

4-8 weeks

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.