Kennedy Polly, Rogan Carol, Higgins Dawn, Chen Yao, Grycuk Emilia, Leroi Iracema, Wormald Andrew, Galvin Miriam
Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland.
Dementia Research Network Ireland, School of Medicine, Trinity College Dublin, Dublin, Ireland.
Front Dement. 2024 Mar 20;3:1360112. doi: 10.3389/frdem.2024.1360112. eCollection 2024.
The social and economic challenges of the COVID-19 pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The "Coping with Loneliness, Isolation and COVID-19" (CLIC) Global Caregiver Survey 2020 received responses from over 5,000 caregivers across 50 countries of people living with enduring brain and/or physical health conditions.
This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-19 pandemic.
Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over 900 English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses.
The majority of respondents were from the United States (71% USA), female (83%) and care providers to people living with dementia (81%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts affected their ability to offer care. There was clear evidence that the disruption to health and social care services-institutions, day care and home services impacted the ability to offer care.
The pandemic may be seen as a catastrophic "event" that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study represents the largest, cross-country survey on the impact of the COVID-19 pandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.
新冠疫情带来的社会和经济挑战对人们的身心健康产生了重大影响。包括痴呆症和精神疾病在内的脑部健康问题患者的护理工作，大部分由非正式的家庭护理人员承担。2020年“应对孤独、隔离与新冠疫情”（CLIC）全球护理人员调查收到了来自50个国家的5000多名护理人员的回复，这些护理人员照顾的是患有持久性脑部和/或身体健康问题的患者。
本研究调查了脑部健康问题（痴呆症和精神健康状况）患者的说英语的护理人员对在新冠疫情背景下其护理能力变化和中断情况的描述。
作为大规模CLIC全球护理人员调查的一部分，收集了定量和定性数据。对900多名英语受访者的数据进行了描述性统计和主题内容分析。一个由临床医生和卫生政策从业者组成的多学科团队参与了基于团队的定性分析。
大多数受访者来自美国（71%为美国人），女性占83%，是痴呆症患者的护理人员（81%）。受访者报告了对亲人身心健康的担忧、获得其他护理资源的有限性以及维持个人幸福的机会有限。实际、社会、心理和情感影响了他们提供护理的能力。有明确证据表明，健康和社会护理服务机构、日托和家庭服务的中断影响了提供护理的能力。
疫情可被视为一场灾难性的“事件”，对生活和生计产生了负面影响。在这一长期期间接受调查的护理人员的一些健康社会决定因素受到了负面影响。需要关爱护理人员，并提供支持性的健康和社会护理干预措施，以维护这支非正式劳动力队伍的福祉。本研究是迄今为止关于新冠疫情对脑部健康问题患者护理人员影响的最大规模跨国调查；为支持机构提供了重要资源，并为政策制定提供了参考依据。
