Health Studies Program, University of Toronto, Toronto, Ontario, Canada.
National Initiative for the Care of the Elderly (NICE), Toronto, Ontario, Canada.
J Palliat Care. 2022 Apr;37(2):233-241. doi: 10.1177/0825859720984564. Epub 2021 Jan 20.
People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.
患有绝症的患者越来越多地需要由非专业护理人员（如家庭成员和朋友）提供更多的护理。尽管有大量关于非专业护理的文献，但从临终关怀和姑息治疗的角度来看，研究却很少。为了解决这一知识差距，本范围综述探讨了加拿大临终关怀中非专业护理的影响/挑战。 根据阿特赛和奥马利的框架进行文献范围综述。搜索了主要的医疗保健和社会科学数据库以及灰色文献。对 2005 年至 2019 年期间符合纳入标准的相关学术和灰色文献来源进行了筛选，并采用主题内容分析来总结研究结果。 在最初的 2717 项搜索结果中，获得了 257 篇不同的全文文章。经过重复和筛选，有 33 篇符合纳入标准。确定了四个主要主题：（1）身体健康挑战，（2）心理社会精神健康挑战，（3）财务问题，以及（4）卫生系统问题。护理人员的性别也被发现是影响提供支持的不同效果的一个重要因素。 本综述使非专业护理人员认识到在照顾患有绝症的患者时所面临的许多身体、心理社会精神、财务和卫生系统挑战。所获得的知识将为未来的实践、政策和研究提供信息和支持。应用于干预措施（如护理人员福利）将有助于改善非专业护理人员的体验和结果以及生活质量。需要进一步研究以了解这些独特的体验和少数族裔非专业护理人员的挑战。
