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Together and apart: providing psychosocial support for patients and families living with brain tumors

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Abstract

Purpose

Brain tumors are associated with neurological sequelae and poor survival, contributing to distress in patients and their families. Our institution has conducted separate support groups for brain tumor patients and caregivers since 1999. This retrospective cohort study aimed to identify characteristics of brain tumor group participants in relation to attendance frequency, and compare themes of discussion in patient and caregiver groups.

Methods

Demographic and medical characteristics were obtained from patient and caregiver group registration sheets and medical chart review. We quantified discussion topics recorded by group facilitators between 1999 and 2006, extracted themes, and examined similarities and differences in the way these themes were expressed.

Results

A total of 137 patients and 238 caregivers attended the groups; about half attended more than one session. The chart review of a randomly selected subset of patient participants revealed that 57.5 % were married, 58.8 % had high-grade gliomas, and 55 % attended their first group within 3 months of diagnosis or at tumor progression. Both groups discussed physical and cognitive consequences, emotional reactions, relationships, coping, end of life, and practical issues. Caregivers discussed difficulties achieving self-care and caregiver burden.

Conclusions

Brain tumor support group facilitators can expect to encounter a range of medical and psychosocial issues in accommodating patients' and caregivers' diverse concerns. Separate brain tumor patient and caregiver groups may allow participants to explore those concerns without worrying about effects on their friends or family. It remains to be seen whether the groups meet the needs of attendees, and whether those who do not attend the groups have unmet needs.

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Acknowledgments

The preliminary results of this work were presented at the annual meeting of the International Psycho-Oncology Society [45]. The authors wish to thank Drs. Lori Bernstein, Gerald Devins, Doris Howell, and Andrew Matthew for helpful comments about the manuscript. This research was supported in part by a University Health Network Allied Health Research Grant, and the Ontario Ministry of Health and Long Term Care. The views expressed do not necessarily reflect those of the OMHLTC.

Ethical standards

This study was conducted in accordance with the guidelines of the University of Toronto, University Health Network Research ethics Board and complies with current laws and guidelines in Canada.

Conflict of interest

The authors have no conflicts of interest to disclose.

Author information

Authors and Affiliations

  1. Pencer Brain Tumor Centre, Princess Margaret Cancer Centre, 610 University Ave Room 18-714, Toronto, ON, M5G 2M9, Canada

    Cheryl Kanter, Maureen Daniels & Kim Edelstein

  2. Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Centre, Toronto, ON, Canada

    Cheryl Kanter, Norma Mammone D’Agostino, Alyson Stone & Kim Edelstein

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

    Norma Mammone D’Agostino & Kim Edelstein

  4. Department of Anthropology, University of Toronto, Toronto, Canada

    Alyson Stone

  5. Ontario Cancer Institute, Princess Margaret Cancer Centre, Toronto, ON, Canada

    Kim Edelstein

Authors
  1. Cheryl Kanter
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  2. Norma Mammone D’Agostino
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  3. Maureen Daniels
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  4. Alyson Stone
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  5. Kim Edelstein
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Correspondence to Cheryl Kanter.

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Kanter, C., D’Agostino, N.M., Daniels, M. et al. Together and apart: providing psychosocial support for patients and families living with brain tumors. Support Care Cancer 22, 43–52 (2014). https://doi.org/10.1007/s00520-013-1933-1

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  • DOI: https://doi.org/10.1007/s00520-013-1933-1

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