Dying of mesothelioma: A qualitative exploration of caregiver experiences.

Lee, JT; Mittal, DL; Warby, A; Kao, S; Dhillon, HM; Vardy, JL

Dying of mesothelioma: A qualitative exploration of caregiver experiences.

Lee, JT Mittal, DL Warby, A Kao, S Dhillon, HM Vardy, JL

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Publisher:: Hindawi
Publication Type:: Journal Article
Citation:: Eur J Cancer Care (Engl), 2022, 31, (5), pp. e13627
Issue Date:: 2022-09

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Field	Value	Language
dc.contributor.author	Lee, JT
dc.contributor.author	Mittal, DL
dc.contributor.author	Warby, A
dc.contributor.author	Kao, S
dc.contributor.author	Dhillon, HM
dc.contributor.author	Vardy, JL
dc.date.accessioned	2023-06-30T20:50:39Z
dc.date.available	2022-05-11
dc.date.available	2023-06-30T20:50:39Z
dc.date.issued	2022-09
dc.identifier.citation	Eur J Cancer Care (Engl), 2022, 31, (5), pp. e13627
dc.identifier.issn	0961-5423
dc.identifier.issn	1365-2354
dc.identifier.uri	http://hdl.handle.net/10453/171049
dc.description.abstract	OBJECTIVE: To explore the experience of family caregivers of people with mesothelioma with focus on end-of-life issues. METHODS: A qualitative sub-study using semi-structured interviews and thematic analysis. RESULTS: Fourteen caregivers were interviewed; 11 were bereaved. The overarching theme was the impact of patients' diagnosis, treatment and death on caregivers and families. Three main themes were identified: (i) information provision and decision-making; (ii) grief and bereavement; and (iii) involvement and timing of palliative care. Caregivers initially had minimal knowledge of mesothelioma and wanted more information. Prognostic uncertainty caused distress. Grief and bereavement sub-themes were (i) coping and personal priorities; (ii) reflections on dying; and (iii) reflections on care. Caregivers highlighted the importance of creating meaningful events, having hope, 'doing something' and support from family and external sources. Reflections on dying contrasted regret after a 'bad', often unexpected death, with 'good' deaths. Care was made difficult by challenges navigating the health system and perceived gaps. Caregivers reported late referral to palliative care. CONCLUSION: Lack of information caused challenges for caregivers. Grief and bereavement outcomes varied and may have been adversely impacted by lack of engagement with palliative care. Integrated care with lung cancer coordinators and improved palliative care access may reduce caregiver burden.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Hindawi
dc.relation.ispartof	Eur J Cancer Care (Engl)
dc.relation.isbasedon	10.1111/ecc.13627
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing, 1112 Oncology and Carcinogenesis, 1117 Public Health and Health Services
dc.subject.classification	Oncology & Carcinogenesis
dc.subject.mesh	Adaptation, Psychological
dc.subject.mesh	Bereavement
dc.subject.mesh	Caregivers
dc.subject.mesh	Humans
dc.subject.mesh	Mesothelioma
dc.subject.mesh	Palliative Care
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Humans
dc.subject.mesh	Mesothelioma
dc.subject.mesh	Palliative Care
dc.subject.mesh	Adaptation, Psychological
dc.subject.mesh	Bereavement
dc.subject.mesh	Qualitative Research
dc.subject.mesh	Caregivers
dc.subject.mesh	Adaptation, Psychological
dc.subject.mesh	Bereavement
dc.subject.mesh	Caregivers
dc.subject.mesh	Humans
dc.subject.mesh	Mesothelioma
dc.subject.mesh	Palliative Care
dc.subject.mesh	Qualitative Research
dc.title	Dying of mesothelioma: A qualitative exploration of caregiver experiences.
dc.type	Journal Article
utslib.citation.volume	31
utslib.location.activity	England
utslib.for	1110 Nursing
utslib.for	1112 Oncology and Carcinogenesis
utslib.for	1117 Public Health and Health Services
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	open_access	*
dc.date.updated	2023-06-30T20:50:34Z
pubs.issue	5
pubs.publication-status	Published
pubs.volume	31
utslib.citation.issue	5

Abstract:

OBJECTIVE: To explore the experience of family caregivers of people with mesothelioma with focus on end-of-life issues. METHODS: A qualitative sub-study using semi-structured interviews and thematic analysis. RESULTS: Fourteen caregivers were interviewed; 11 were bereaved. The overarching theme was the impact of patients' diagnosis, treatment and death on caregivers and families. Three main themes were identified: (i) information provision and decision-making; (ii) grief and bereavement; and (iii) involvement and timing of palliative care. Caregivers initially had minimal knowledge of mesothelioma and wanted more information. Prognostic uncertainty caused distress. Grief and bereavement sub-themes were (i) coping and personal priorities; (ii) reflections on dying; and (iii) reflections on care. Caregivers highlighted the importance of creating meaningful events, having hope, 'doing something' and support from family and external sources. Reflections on dying contrasted regret after a 'bad', often unexpected death, with 'good' deaths. Care was made difficult by challenges navigating the health system and perceived gaps. Caregivers reported late referral to palliative care. CONCLUSION: Lack of information caused challenges for caregivers. Grief and bereavement outcomes varied and may have been adversely impacted by lack of engagement with palliative care. Integrated care with lung cancer coordinators and improved palliative care access may reduce caregiver burden.

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http://hdl.handle.net/10453/171049