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“It's a traumatic illness, traumatic to witness.”: A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma

“It's a traumatic illness, traumatic to witness.”: A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma
“It's a traumatic illness, traumatic to witness.”: A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma
BackgroundCutaneous T‐cell lymphomas (CTCL) are rare cancers which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement.ObjectivesTo explore the experiences of bereaved family caregivers of patients with CTCL.MethodsSingle semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement.ResultsFifteen carers of eleven deceased patients participated. Experiences clustered under four themes1 Complexity of care and medical intervention2 Carer roles in advanced CTCL3 Person vs. organisation‐centred care in advanced CTCL4 Knowing and not knowing: reflections on dying, death and bereavementCaregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organisational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable.Subthemes within each theme provide more detail about caregiver experiences.ConclusionsFamily caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organisational flexibility and of good communication between health care providers in advanced CTCL.
0007-0963
1-7
Orlowska, D.
1edf599a-929f-4c5d-8fe6-683259ae4af8
Selman, L. E.
54cdad9f-70e2-4056-a164-28c605cf60d0
Beynon, T.
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Radcliffe, E.
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Whittaker, S.
ac485a9d-7c3b-42ad-84b9-2700e931e266
Child, F.
fd57fc12-f770-401c-af26-41f31cb01f2c
Harding, R.
6e43af77-2775-42c8-a9fa-f7e7d9d19324
Orlowska, D.
1edf599a-929f-4c5d-8fe6-683259ae4af8
Selman, L. E.
54cdad9f-70e2-4056-a164-28c605cf60d0
Beynon, T.
3a2bcb09-8649-44d3-8e57-cdd0989a4729
Radcliffe, E.
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Whittaker, S.
ac485a9d-7c3b-42ad-84b9-2700e931e266
Child, F.
fd57fc12-f770-401c-af26-41f31cb01f2c
Harding, R.
6e43af77-2775-42c8-a9fa-f7e7d9d19324

Orlowska, D., Selman, L. E., Beynon, T., Radcliffe, E., Whittaker, S., Child, F. and Harding, R. (2018) “It's a traumatic illness, traumatic to witness.”: A qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma. British Journal of Dermatology, 1-7. (doi:10.1111/bjd.16447).

Record type: Article

Abstract

BackgroundCutaneous T‐cell lymphomas (CTCL) are rare cancers which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement.ObjectivesTo explore the experiences of bereaved family caregivers of patients with CTCL.MethodsSingle semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement.ResultsFifteen carers of eleven deceased patients participated. Experiences clustered under four themes1 Complexity of care and medical intervention2 Carer roles in advanced CTCL3 Person vs. organisation‐centred care in advanced CTCL4 Knowing and not knowing: reflections on dying, death and bereavementCaregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organisational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable.Subthemes within each theme provide more detail about caregiver experiences.ConclusionsFamily caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organisational flexibility and of good communication between health care providers in advanced CTCL.

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Accepted/In Press date: 6 February 2018
Published date: 16 February 2018

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Local EPrints ID: 427551
URI: https://eprints.soton.ac.uk/id/eprint/427551
ISSN: 0007-0963
PURE UUID: 12fc7407-daf9-4f4e-8d7c-b8d8bac735c9

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Date deposited: 23 Jan 2019 17:30
Last modified: 13 Mar 2019 17:37

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Contributors

Author: D. Orlowska
Author: L. E. Selman
Author: T. Beynon
Author: E. Radcliffe
Author: S. Whittaker
Author: F. Child
Author: R. Harding

University divisions

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