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“我虽然没有得癌症,但它对我的影响同样大”:一项定性研究,探讨农村照顾者在照顾癌症患者的同时,为自己的健康和福祉寻求和获得支持的经历。

"I'm not the one with cancer but it's affecting me just as much": A qualitative study of rural caregivers' experiences seeking and accessing support for their health and wellbeing while caring for someone with cancer.

机构信息

Viertel Cancer Research Centre, Cancer Council Queensland, 553 Gregory Terrace, Fortitude Valley, QLD, 4006, Australia.

School of Exercise and Nutrition Sciences, Queensland University of Technology, Kelvin Grove, QLD, Australia.

出版信息

Support Care Cancer. 2024 Oct 31;32(11):761. doi: 10.1007/s00520-024-08947-9.

Abstract

PURPOSE

Caregivers provide vital support to people with cancer but often report feeling unsupported themselves. This study investigated rural caregivers' experiences seeking support for their health and wellbeing while caring for someone with cancer.

METHODS

Through semi-structured interviews, 20 rural caregivers described their experiences seeking and accessing support for their own health and wellbeing while caring for someone with cancer, including what support was, or would have been, helpful. Interview transcripts were analysed using content analysis to identify the type and source of support sought and what aspects of the support were helpful or unhelpful.

RESULTS

Health and wellbeing support was sought across medical and psychosocial domains. Caregivers' responses reflected both facilitators and barriers to support-seeking and benefits and challenges of accessing support. Facilitators to support-seeking included telehealth options and being involved in patient care discussions, as this helped caregivers know what to expect in their role. Barriers included social isolation while travelling for treatment and caregivers' needs for support not being acknowledged or understood by medical staff or social networks. Benefits of accessing support included help with managing daily responsibilities and being linked with additional services. Challenges included delays in receiving support, inadequate duration of support, and lack of lived experience among care providers.

CONCLUSIONS

To optimise rural caregivers' access to support for their health and wellbeing, support services should be prompt and flexible in delivery, simple to navigate, integrated with patient care, improve caregivers' coping ability, provide access to additional supports, and reduce caregiver burden.

摘要

目的

照顾者为癌症患者提供了重要的支持,但他们自己常常感到没有得到支持。本研究调查了农村照顾者在照顾癌症患者时寻求自身健康和福祉支持的经历,包括他们寻求和获得了哪些支持,以及哪些支持是有帮助的。

方法

通过半结构化访谈,20 名农村照顾者描述了他们在照顾癌症患者时寻求和获得自身健康和福祉支持的经历,包括他们所寻求的支持的类型和来源,以及哪些方面的支持是有帮助的或没有帮助的。访谈记录采用内容分析法进行分析,以确定所寻求的支持的类型和来源,以及支持的哪些方面是有帮助的或没有帮助的。

结果

健康和福祉支持在医疗和心理社会领域都有需求。照顾者的反应反映了支持寻求的促进因素和障碍,以及获得支持的好处和挑战。支持寻求的促进因素包括远程医疗选择和参与患者护理讨论,因为这有助于照顾者了解在他们的角色中需要期待什么。障碍包括在为治疗而旅行时的社会孤立,以及医疗人员或社交网络不承认或理解照顾者的需求。获得支持的好处包括帮助管理日常责任和与其他服务建立联系。挑战包括获得支持的延迟、支持的持续时间不足,以及护理提供者缺乏生活经验。

结论

为了优化农村照顾者获得健康和福祉支持的机会,支持服务在提供时应该及时且灵活,易于操作,与患者护理相结合,提高照顾者的应对能力,提供获得其他支持的途径,并减轻照顾者的负担。

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