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满足已表达或预期需求的行动:晚期癌症患者及其家庭护理人员对专科姑息家庭护理团队的体验

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.

作者信息

Klarare Anna, Rasmussen Birgit H, Fossum Bjöörn, Hansson Johan, Fürst Carl Johan, Lundh Hagelin Carina

机构信息

Department of Health Care Sciences, Palliative Research Centre, Ersta Sköndal Bräcke University College, Stockholm, Sweden.

The Institute for Palliative Care, Region Skane, Lund University, Lund, Sweden.

出版信息

Eur J Cancer Care (Engl). 2018 Nov;27(6):e12948. doi: 10.1111/ecc.12948. Epub 2018 Oct 9.

Abstract

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

摘要

晚期癌症患者以及接受姑息治疗的家庭照护者面临着身体、心理、社会和生存方面的挑战,而且大部分时间都是独自在家。专业姑息家庭护理团队的服务对于在不确定情况下提供安全感可能很有帮助。本研究的目的是描述患者和家庭照护者对专业姑息家庭护理团队行动的体验,这些行动被参与者认定为有助于或阻碍干预措施。采用强化关键事件技术对6名患者和7名家庭照护者进行了访谈。共识别出95个关键事件和愿望清单项目。提供充足资源、信守承诺并可靠,以及建立伙伴关系,是专业姑息护理团队的行动,患者和家庭照护者认为这些行动有助于满足患者和家庭照护者已表达或预期的需求。可靠并让患者和家庭照护者参与伙伴关系有助于维持日常生活,即使死亡可能临近。未满足的需求导致了不被尊重或个人空间/尊严受到侵犯的体验。

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