PDF(Pubmed)
Abstract：
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.
CONCLUSIONS: 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.
UNASSIGNED: 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.
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.
CONCLUSIONS: 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.
UNASSIGNED: 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.
摘要：
背景：患有严重精神疾病（SMI）的人患有长期身体状况（LTC）的比率更高，结果更差。SMI和LTC的管理非常复杂，许多SMI患者依靠非正式护理人员提供支持，这可能会导致高水平的照顾者负担，和护理人员倦怠。护理人员倦怠可能会导致非正式护理人员的健康状况不佳，并降低他们能够提供的护理质量。因此,重要的是要了解关怀经验，以确定和解决导致负担和倦怠的因素。
方法：本文报告了对SMI和LTC并存的非正式照顾者进行的半结构化访谈和焦点小组的二次定性分析。我们在2018年12月至2019年4月期间在英格兰招募了12名非正式护理人员。对转录本进行编码和主题分析。
结果：我们确定了两个总体主题和五个子主题。主题包括“在所有方面进行战斗：需求和资源之间的压力越来越大”，其中描述了在SMI和LTC共存的背景下提供护理的挑战，和“安保：长期高度警惕的必要性”，它捕捉到了非正式护理人员的角色是如何通过管理高风险情况来定义的，导致过度警惕和家长式的护理方法。
结论：SMI和共存LTC患者的非正式护理人员的经验是获得支持和重大风险管理的机会有限，这可能会导致照顾者的负担。需要进一步的初步研究来了解SMI和LTC患者的照顾者角色的经验如何影响照顾者的负担。
■我们的PPI面板DIAMONDSVoice从概念上为这项研究提供了指导，设计和开发面试指南和招聘材料，以完成最终写作。钻石语音由具有SMI和LTC经验的服务用户和护理人员组成。三名照顾者成员审查了最终手稿，还有两个被认为是作者。
方法：本文报告了对SMI和LTC并存的非正式照顾者进行的半结构化访谈和焦点小组的二次定性分析。我们在2018年12月至2019年4月期间在英格兰招募了12名非正式护理人员。对转录本进行编码和主题分析。
结果：我们确定了两个总体主题和五个子主题。主题包括“在所有方面进行战斗：需求和资源之间的压力越来越大”，其中描述了在SMI和LTC共存的背景下提供护理的挑战，和“安保：长期高度警惕的必要性”，它捕捉到了非正式护理人员的角色是如何通过管理高风险情况来定义的，导致过度警惕和家长式的护理方法。
结论：SMI和共存LTC患者的非正式护理人员的经验是获得支持和重大风险管理的机会有限，这可能会导致照顾者的负担。需要进一步的初步研究来了解SMI和LTC患者的照顾者角色的经验如何影响照顾者的负担。
■我们的PPI面板DIAMONDSVoice从概念上为这项研究提供了指导，设计和开发面试指南和招聘材料，以完成最终写作。钻石语音由具有SMI和LTC经验的服务用户和护理人员组成。三名照顾者成员审查了最终手稿，还有两个被认为是作者。
