Volunteers in community-based programs will go into a hospital, nursing home or – more typically – the dying person’s own home to provide care and support for people with life-limiting illnesses and their families. The issue of lack of referrals and/or late referrals was the topic of a recent study by Claxton-Oldfield and Marrison-Shaw (published online ahead of print in the American Journal of Hospice & Palliative Medicine) (1). Many people who could benefit from the companionship, emotional support, and practical assistance provided by volunteers are not taking advantage of these community-based programs. Claxton-Oldfield and Marrison-Shaw wanted to know why not? Why are referrals to community-based volunteer programs not forthcoming?
What was done
In an attempt to answer this question, the authors created the “Perceived Barriers and Enablers to Hospice Palliative Care Referrals Questionnaire” (PBEQ) based on the results of Study 1 – interviews with a physician, home care nurse manager, social worker, and volunteer coordinator – and a review of the mostly American literature on barriers and enablers to accessing hospice services in general. Ten volunteer coordinators in Atlantic Canada responded to the PBEQ and rated the extent to which they perceived 18 items as barriers or obstacles to referrals (e.g., “Patient/family do not want to admit they cannot manage on their own”, “Health care providers put more emphasis on medical care for the terminally ill”). The volunteer coordinators also rated the extent to which they perceived 12 items as enablers or ways of increasing referrals to their program (e.g., “Community presentations about the volunteer program”, “Encouraging health care providers, volunteers, and users of volunteer services to spread the word about the benefits of the program”).
What was found
The top 3 greatest perceived barriers were:
- patient /family have too many people coming in and out of their home; a volunteer is just another body
- patient/family do not like the words hospice and palliative, because they mean “giving up” or “time to die”
- patient/family are unaware of how much training (30+ hours) volunteers receive
The top 3 greatest perceived enablers were:
- encourage healthcare providers to recognize caregiver burnout and the value of utilizing a volunteer
- encourage healthcare providers, volunteers, and users of volunteer services to spread the word about the benefits of the volunteer program
- meeting with health care providers on a regular basis to promote the value of the program
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