The role of family confidants and caregivers in the care of older cancer patients: Extending the concept of "shared decision-making".

family older cancer patients qualitative research methods quality of life survivorship

Journal

Health science reports
ISSN: 2398-8835
Titre abrégé: Health Sci Rep
Pays: United States
ID NLM: 101728855

Informations de publication

Date de publication:
Jun 2021
Historique:
received: 19 02 2021
accepted: 28 03 2021
entrez: 12 5 2021
pubmed: 13 5 2021
medline: 13 5 2021
Statut: epublish

Résumé

Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision-making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient-caregiver relationships. We conducted semi-structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi-step coding method informed by Grounded Theory methodology toward characterizing patient-caregiver relationships, the treatment decision-making process, and the caregivers' role therein. In the majority of cases (86%), patients were being supported by caregivers. We categorized patient-caregiver relationships in regards to the caregivers' involvement in the therapy decision-making process. We found patient-caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision-making process. Yet, only in 38% of cases, a caregiver attended relevant patient-physician-consultations. Depending on the nature of the patient-caregiver relationship, the traditional concept of shared decision-making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver-involvement bears risks of over-stepping elderly patients' wishes, thus violating patient autonomy.

Sections du résumé

BACKGROUND AND AIMS OBJECTIVE
Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision-making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient-caregiver relationships.
METHODS METHODS
We conducted semi-structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi-step coding method informed by Grounded Theory methodology toward characterizing patient-caregiver relationships, the treatment decision-making process, and the caregivers' role therein.
RESULTS RESULTS
In the majority of cases (86%), patients were being supported by caregivers. We categorized patient-caregiver relationships in regards to the caregivers' involvement in the therapy decision-making process. We found patient-caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision-making process. Yet, only in 38% of cases, a caregiver attended relevant patient-physician-consultations.
CONCLUSION CONCLUSIONS
Depending on the nature of the patient-caregiver relationship, the traditional concept of shared decision-making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver-involvement bears risks of over-stepping elderly patients' wishes, thus violating patient autonomy.

Identifiants

pubmed: 33977163
doi: 10.1002/hsr2.281
pii: HSR2281
pmc: PMC8100949
doi:

Types de publication

Journal Article

Langues

eng

Pagination

e281

Informations de copyright

© 2021 The Authors. Health Science Reports published by Wiley Periodicals LLC.

Déclaration de conflit d'intérêts

The authors declare no conflicts of interest.

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Auteurs

Frank Gieseler (F)

Clinic for Hematology and Oncology University Hospital Schleswig-Holstein (UKSH) Luebeck Germany.

Andreas Heidenreich (A)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Jacqueline Schubert (J)

Clinic for Hematology and Oncology University Hospital Schleswig-Holstein (UKSH) Luebeck Germany.

Fabian Frielitz (F)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Christoph Rehmann-Sutter (C)

Institute for History of Medicine and Science Studies, University of Luebeck Luebeck Germany.

Frank Wörler (F)

Institute for History of Medicine and Science Studies, University of Luebeck Luebeck Germany.

Christina Schües (C)

Institute for History of Medicine and Science Studies, University of Luebeck Luebeck Germany.

Joachim Hübner (J)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Susanne Elsner (S)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Katarina Block (K)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Achim Rody (A)

Clinic for Gynecology University Hospital Schleswig-Holstein (UKSH) Luebeck Germany.

Nikolas von Bubnoff (N)

Clinic for Hematology and Oncology University Hospital Schleswig-Holstein (UKSH) Luebeck Germany.

Tobias Keck (T)

Clinic for Surgery University Hospital Schleswig-Holstein (UKSH) Luebeck Germany.

Monika Steimann (M)

Strandklinik Ostseebad Boltenhagen Ostseebad Boltenhagen Germany.

Gero Endsin (G)

VAMED, Rehaklinik Lehmrade Lehmrade Germany.

Alexander Katalinic (A)

Institute for Social Medicine and Epidemiology, University of Luebeck Luebeck Germany.

Classifications MeSH