Understanding the Experiences of end of Life Care for Patients with Mesothelioma from the Perspective of Bereaved Family Caregivers in the UK: A Qualitative Analysis.
Understanding the Experiences of end of Life Care for Patients with Mesothelioma from the Perspective of Bereaved Family Caregivers in the UK: A Qualitative Analysis.
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从英国丧亲的家庭护理人员的角度来了解间皮瘤患者生命终止护理的经历：定性分析。
DOI：
10.1177/08258597221079235
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发表时间：
2022-04
影响因子：
1.7
通讯作者：
Gardiner, Clare
中科院分区：
文献类型：
--
作者：
Harrison, Madeleine;Darlison, Liz;Gardiner, Clare
关键词：
Objectives: Mesothelioma is a rare, progressive cancer with a short trajectory from diagnosis to the end of life. This study explores the experiences of palliative and end of life care for patients with mesothelioma from the perspective of bereaved family caregivers. Methods: A qualitative, descriptive approach was adopted comprising face-to-face, semi-structured interviews with bereaved caregivers of patients with mesothelioma in the UK. An inductive, thematic analysis was conducted using the ‘Framework’ approach. Results: Nine bereaved caregivers participated. Four themes emerged: understanding what lies ahead; carer support; care co-ordination; managing after death: practicalities, inquests and abandonment. Caregivers need to understand what lies ahead in order to emotionally and practically prepare themselves for supporting the patient at the end of life. Information and support needs of caregivers were often distinct from those of patients, including the importance of information about the coroner's involvement. The importance of care co-ordination was emphasised, with caregivers valuing on-going relationships and a named individual taking responsibility for co-ordinating the patients care. Feelings of abandonment arose when there was no contact with healthcare professionals following the death of the patient. Conclusions: Greater opportunity for open, one-to-one communication between family caregivers and healthcare professionals is vital to enable the caregiver to prepare for what lies ahead at the end of life and prevent feelings of abandonment after the death of the patient. Improved care co-ordination and partnership working are essential for supporting both patient and caregiver at the end of life.
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