Palliative care for patients around the time of haematopoietic stem cell transplant: a qualitative study of patients' perceptions and experiences of unmet need and attitudes towards palliative care involvement.

Advance care planning Decision making Haematopoietic stem cell transplantation Palliative care Qualitative research Shared

Journal

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
ISSN: 1433-7339
Titre abrégé: Support Care Cancer
Pays: Germany
ID NLM: 9302957

Informations de publication

Date de publication:
Mar 2022
Historique:
received: 15 04 2021
accepted: 08 09 2021
pubmed: 31 10 2021
medline: 1 2 2022
entrez: 30 10 2021
Statut: ppublish

Résumé

Haemato-oncology patients are likely to be referred later to palliative care than patients with solid tumours, despite experiencing similar symptom burden. Patients prior to stem cell transplant may benefit from symptom control, advance care planning and shared decision-making, and previous studies have demonstrated feasibility and benefit of such a service. However, the views of patients are not yet established, and are vital to ensure acceptability of the service. To identify areas where a palliative care team may help to support patients being considered for a stem cell transplant, and to explore the attitudes and perceptions of patients towards palliative care at this time. A qualitative study including interviews (N = 12) and a focus group (N = 4) for patients pre- and post-transplant, using a semi-structured format via telephone, online video-conferencing and face-to-face discussions. Recordings were transcribed and analysed using thematic analysis. A tertiary cancer centre in the UK. Themes identified were the following: Identified needs, Information and decision-making, Importance of relationships, Changing perceptions of what palliative care means, and The future. Patients associate palliative care with terminal care due to indirect experiences. Patients were open to palliative care once its purpose was explained and described emotional and physical needs relevant to early palliative care. The involvement of early palliative care alongside haematology treatment prior to stem cell transplant may improve quality of life for patients and facilitate shared decision-making at a crucial stage of treatment. Early palliative care should be offered alongside haematology care around the time of stem cell transplant, with information provided to patients regarding its role.

Sections du résumé

BACKGROUND BACKGROUND
Haemato-oncology patients are likely to be referred later to palliative care than patients with solid tumours, despite experiencing similar symptom burden. Patients prior to stem cell transplant may benefit from symptom control, advance care planning and shared decision-making, and previous studies have demonstrated feasibility and benefit of such a service. However, the views of patients are not yet established, and are vital to ensure acceptability of the service.
AIMS OBJECTIVE
To identify areas where a palliative care team may help to support patients being considered for a stem cell transplant, and to explore the attitudes and perceptions of patients towards palliative care at this time.
DESIGN METHODS
A qualitative study including interviews (N = 12) and a focus group (N = 4) for patients pre- and post-transplant, using a semi-structured format via telephone, online video-conferencing and face-to-face discussions. Recordings were transcribed and analysed using thematic analysis.
SETTING METHODS
A tertiary cancer centre in the UK.
FINDINGS RESULTS
Themes identified were the following: Identified needs, Information and decision-making, Importance of relationships, Changing perceptions of what palliative care means, and The future. Patients associate palliative care with terminal care due to indirect experiences. Patients were open to palliative care once its purpose was explained and described emotional and physical needs relevant to early palliative care.
CONCLUSIONS CONCLUSIONS
The involvement of early palliative care alongside haematology treatment prior to stem cell transplant may improve quality of life for patients and facilitate shared decision-making at a crucial stage of treatment. Early palliative care should be offered alongside haematology care around the time of stem cell transplant, with information provided to patients regarding its role.

Identifiants

pubmed: 34716484
doi: 10.1007/s00520-021-06556-4
pii: 10.1007/s00520-021-06556-4
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

2253-2261

Informations de copyright

© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.

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Auteurs

Rebecca Gemmell (R)

Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK. rebeccagemmell@nhs.net.

Angela Halley (A)

Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Anna-Marie Stevens (AM)

Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Alison Allam (A)

Public and Patient Representative, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Margaret Perkins (M)

Public and Patient Representative, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Mark Ethell (M)

Haematology Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Priya Sriskandarajah (P)

Haematology Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

Joanne Droney (J)

Palliative Care Department, Royal Marsden NHS Foundation Trust, Fulham Road, London, SW3 6JJ, UK.

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