Article Text

Download PDFPDF
OA8 Caring for the family caregiver: working with volunteers to implement and improve a service to enable family caregivers to maintain their own wellbeing
  1. S Robin Cohen1,2,
  2. Susan Keats1,
  3. Maria Cherba1,
  4. Dawn Allen1,
  5. Christopher J MacKinnon1,3,
  6. Vasiliki Bitzas1,
  7. Naomi Kogan4,
  8. Jamie L Penner1,2,
  9. Monica Parmar Calislar1,2,
  10. Anna Feindel5,
  11. Bernard Lapointe1,4,
  12. Sharon Baxter6,
  13. Suzanne O’Brien5 and
  14. Kelli Stajduhar7
  1. 1McGill University
  2. 2Lady Davis Institute for Medical Research, Jewish General Hospital
  3. 3McGill University Health Centre
  4. 4Jewish General Hospital
  5. 5Hope & Cope
  6. 6Canadian Hospice Palliative Care Association
  7. 7University of Victoria


Background Family caregivers suffer physically, mentally, and spiritually. Community volunteers play an important role in supporting patients at the end of life or former caregivers in bereavement. However, there are no research reports of volunteer services focused on maintaining the wellbeing of end-of-life caregivers.

Aim To have volunteers, a hired volunteer coordinator, health care providers, and researchers implement and formatively evaluate a volunteer service to enable family caregivers to maintain their well being while providing care and subsequent bereavement. This presentation will focus on the volunteers’ roles with the project as both agents of change to the service and as support for the caregivers.

Method A qualitative formative evaluation informed by Guba and Lincoln’s Fourth Generation Evaluation (1989) participatory design was conducted. Data was collected through individual interviews, focus groups, participant observation during volunteer support meetings, and through volunteers’ written reflections.

Results Amongst the volunteers, volunteer coordinator, and principal investigator, there was mutual respect for and interest in learning about everyone’s roles and experiences in the project. The experience was rewarding because they felt they helped the family caregiver and enjoyed developing and improving the service and working in a supportive team. Volunteers’ challenges included being nervous for their first meeting with a caregiver, and frustration with some rules put in place to protect them (e.g. not helping the caregiver with direct care for the patient).

Conclusion Volunteers can be an effective part of the research team, while providing valuable support and encouragement for family caregivers to maintain their own wellbeing.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.