Harrison Reema, Raman Madhav, Walpola Ramesh Lahiru, Chauhan Ashfaq, Sansom-Daly Ursula M
Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia.
School of Population Health, UNSW Sydney, Sydney, Australia.
BMC Health Serv Res. 2021 Jun 29;21(1):620. doi: 10.1186/s12913-021-06611-0.
Family-based 'informal' caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations.
Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach.
Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role.
Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
基于家庭的“非正式”照料者对于实现可持续的癌症护理至关重要，这种护理既能产生最佳的健康结果，也会给照料者带来心理负担。目前，针对照料者的心理社会支持证据并未涉及他们在为亲人提供临床和健康相关护理中所扮演角色的影响。本研究旨在填补这一空白，包括针对优先人群的研究。
使用焦点小组和访谈方法收集定性数据。我们有目的地抽取了被认定为在提供临床护理方面责任负担较重的照料者，包括少数族裔背景的照料者、父母照料者和农村居民。对访谈记录采用团队协作的方式进行主题分析。
基于家庭的照料者包括配偶（11人）、父母（7人）、子女（1人）、兄弟姐妹（1人）。10名参与者来自少数族裔背景，5名参与者来自地区或农村地区。由此产生了四个相互关联的主题：1）提供临床护理和应对个人情绪困扰的双重负担；2）应对医疗保健伙伴关系动态；3）培养护理技能，以及4）独特的支持需求和获取支持的障碍。这些数据证明了作为为患癌亲人提供家庭护理一部分而提供临床护理所面临的独特挑战，以及照料者在承担这一角色时缺乏支持。
我们的研究结果凸显了基于家庭的照料者在当代卫生系统中对提供癌症护理的重大贡献。在照料者提供诸如药物管理等临床护理方面，对他们的支持明显不足。为照料者提供准备以提供临床护理，同时培养他们在这一具有挑战性的时期应对压力源和情绪的能力的支持项目，对于可持续的、以人为本护理可能具有重要价值。
