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dc.contributor.authorDarlison, Liz
dc.date.accessioned2022-03-10T16:46:41Z
dc.date.available2022-03-10T16:46:41Z
dc.date.issued2022
dc.identifier.citationHarrison, M., Darlison, L., & Gardiner, C. (2022). 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. Journal of palliative care, 8258597221079235. Advance online publication. https://doi.org/10.1177/08258597221079235en_US
dc.identifier.other10.1177/08258597221079235
dc.identifier.urihttp://hdl.handle.net/20.500.12904/15237
dc.description.abstractObjectives: 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.
dc.description.urihttps://journals.sagepub.com/doi/10.1177/08258597221079235en_US
dc.subjectend-of-life careen_US
dc.subjectfamily caregiversen_US
dc.subjectinformal caregiversen_US
dc.subjectmesotheliomaen_US
dc.subjectpalliative careen_US
dc.subjectqualitative researchen_US
dc.titleUnderstanding the experiences of end of life care for patients with mesothelioma from the perspective of bereaved family caregivers in the UK: a qualitative analysisen_US
dc.typeArticleen_US
rioxxterms.funderDefault funderen_US
rioxxterms.identifier.projectDefault projecten_US
rioxxterms.versionNAen_US
rioxxterms.versionofrecordhttps://doi.org/10.1177/08258597221079235en_US
rioxxterms.typeJournal Article/Reviewen_US
refterms.panelUnspecifieden_US
refterms.dateFirstOnline2022
html.description.abstractObjectives: 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.en_US
rioxxterms.funder.project94a427429a5bcfef7dd04c33360d80cden_US


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