Midlöv Elina Mikaelsson, Lindberg Terese, Skär Lisa
Department of Health, Faculty of Engineering, Blekinge Institute of Technology, Karlskrona, Sweden.
Department of Care Science, Faculty of Health and Society, Malmö University, Malmö, Sweden.
Scand J Caring Sci. 2024 Jun;38(2):358-367. doi: 10.1111/scs.13239. Epub 2024 Jan 23.
The efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home.
This study had a qualitative descriptive design based on the data from open-ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis.
The analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support.
It is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.
亲属在家中提供姑息治疗（PC）的努力非常重要。亲属承担着重大责任，面临诸多挑战，身心健康状况不佳的风险也有所增加。对这些亲属的支持很重要，但他们往往得不到所需的支持。当在家中提供姑息治疗时，必须改善对亲属在患者死亡前后的支持。本研究旨在描述亲属对于改善在家中进行一般姑息治疗时，医疗专业人员（HPs）在患者死亡前后给予支持的建议。
本研究采用定性描述性设计，基于从瑞典姑息治疗登记处收集的一项调查中的开放式问题数据。受访者是瑞典各地参与家中一般姑息治疗的成年亲属。使用主题分析法对文本数据进行分析。
分析确定了四个主题：（1）寻求增加与医疗专业人员的接触机会，（2）需要更多信息，（3）期望改善沟通，（4）请求个性化支持。
了解并解决如何改善对亲属的支持以减少亲属未满足的需求非常重要。本研究结果为改善支持亲属的方式提供了一些具体建议。进一步的研究应侧重于量身定制的支持干预措施，以便医疗专业人员在在家中提供姑息治疗时，能够在患者死亡前后为亲属提供最佳支持。
