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A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers

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Abstract

Purpose

Brain tumours represent a significant burden for patients and caregivers. The aims of the present study were to explore the perceived benefits of support groups for patients and their caregivers, as well as the barriers to participation, and to generate suggestions for improvement.

Methods

Brain tumour patients and caregivers were recruited from the brain tumour centre at Princess Margaret Cancer Centre to participate in focus groups. Focus groups were audio-recorded, transcribed, and thematically analysed using qualitative methods. Eight patients (five who had attended the support groups and three who had not) and eight caregivers (all of whom attended the groups) participated in separate focus groups.

Results

Five major themes emerged: group cohesion (e.g., camaraderie and kinship), motivating factors to attend (e.g., loneliness), logistical factors that affected attendance (e.g., transportation), structure and content of the group (e.g., discussion topics), and suggestions for improvement (e.g., receiving personal reminders).

Conclusions

This study highlights the supportive needs of brain tumour patients and their caregivers. The key findings provide helpful information on how to maximise the benefits of support groups for these populations.

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Funding

This research was financially supported by a Brain Tumour Foundation of Canada Research Grant, with additional support from the Princess Margaret Cancer Foundation and the Ontario Ministry of Health and Long-Term Care. The views expressed do not necessarily reflect those of the OMOHLTC.

Author information

Author notes

  1. Kim Edelstein and Norma D’Agostino share senior authorship

Authors and Affiliations

  1. Department of Supportive Care, UHN - Princess Margaret Cancer Centre, 610 University Ave, 18-716, Toronto, ON, M5G 2M9, Canada

    Sasha Mallya, Maureen Daniels, Cheryl Kanter, Alyson Stone, Amanda Cipolla, Kim Edelstein & Norma D’Agostino

  2. Department of Psychiatry, University of Toronto, Toronto, Canada

    Kim Edelstein & Norma D’Agostino

Authors
  1. Sasha Mallya
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  2. Maureen Daniels
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  5. Amanda Cipolla
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  7. Norma D’Agostino
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Corresponding author

Correspondence to Kim Edelstein.

Ethics declarations

This study was approved by the University Health Network Research Ethics Board. Participants provided written, informed consent and received $25 for their time.

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The authors declare that they have no conflict of interest.

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Mallya, S., Daniels, M., Kanter, C. et al. A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers. Support Care Cancer 28, 2659–2667 (2020). https://doi.org/10.1007/s00520-019-05069-5

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  • DOI: https://doi.org/10.1007/s00520-019-05069-5

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