Department of Health Sciences, University of York, York, UK.
Psychosis Research Unit, Greater Manchester Mental Health NHS Trust, Manchester, UK.
Health Expect. 2024 Jun;27(3):e14119. doi: 10.1111/hex.14119.
BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.
背景：患有严重精神疾病（SMI）的人患有长期身体疾病（LTC）的比例更高，结局更差。SMI 和 LTC 的管理非常复杂，许多 SMI 患者依赖于非正式护理者提供支持，这可能导致护理者负担过重和倦怠。护理者倦怠会导致非正式护理者健康状况不佳，并降低他们能够提供的护理质量。因此，了解护理者的护理体验对于识别和解决导致负担和倦怠的因素非常重要。
方法：本文报告了对患有 SMI 和 LTC 的患者的非正式护理者进行的半结构式访谈和焦点小组的二次定性分析。我们于 2018 年 12 月至 2019 年 4 月期间在英格兰招募了 12 名非正式护理者。对转录本进行了编码和主题分析。
结果：我们确定了两个总体主题和五个子主题。主题包括“在所有战线作战：需求与资源之间的压力越来越大”，描述了在 SMI 和 LTC 共存的情况下提供护理的挑战，以及“守护：慢性高度警惕的必要性”，描述了非正式护理者的角色如何通过管理高风险情况来定义，从而导致高度警惕和家长式的护理方法。
结论：患有 SMI 和共存 LTC 的人的非正式护理者的经历以有限的支持获取和重大风险的管理为标志，这可能导致护理者负担过重。需要进一步的初步研究来了解 SMI 和 LTC 患者的护理者角色经历如何影响护理者负担。
患者或公众贡献：我们的 PPI 小组 DIAMONDS Voice 从研究的构思、设计和发展，包括访谈指南和招募材料，到最终的撰写，都为这项研究提供了指导。DIAMONDS Voice 由具有 SMI 和 LTC 经验的服务使用者和护理者组成。三名护理者成员审查了最终手稿，其中两名被列为作者。
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