Psychology, School of Social Sciences, University of Westminster, London, UK.
Alzheimer's Disease International, London, UK.
Int J Geriatr Psychiatry. 2024 Sep;39(9):e6141. doi: 10.1002/gps.6141.
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.
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.
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.
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.
护理人员在全球范围内对阿尔茨海默病患者的支持起着至关重要的作用。用户知情的研究对于为痴呆症支持组织制定跨文化指南至关重要。虽然护理人员的应对策略已经得到了充分的研究，但“应对有效性”框架并不能代表所有护理人员的需求。我们的目标是开发一个强大的、包容性的、适用于全球的护理人员知情的支持需求框架。
我们与阿尔茨海默病国际组织和罗氏公司合作，在 COVID-19 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 名家庭护理人员进行了在线半结构化定性访谈。参与者生成的照片有助于鼓励讨论隐藏的背景问题。在全球和国家慈善和行业部门的参与下，对访谈和照片进行了迭代的、归纳的叙事分析。
我们确定了一个具有跨文化护理方法的框架，对支持有影响：（1）同理心，使用情感焦点策略来发展强大的专业知识和应对技能，提供特定时间的信息、心理社会和同伴支持需求。（2）组织，使用问题焦点策略，具有强大的专业知识和倡导的叙述，受益于早期的结构化信息和专业确认。（3）非认同的护理，日常护理发生时没有专业知识和专长，护理人员寻求帮助管理与疾病相关的支持。（4）不情愿，因不愿承担护理责任，护理人员希望专业人员来进行日常护理。
我们的研究结果超越了支持的“应对有效性”框架，提出了一个新的“角色需求”框架。我们的方法支持以包容的方式根据全球个别护理人员的情况定制支持。
