INTEGRATE study 6

Volunteers have a special position in palliative care. They provide practical, social, and emotional support to patients and their families. This study aims to describe and analyse the characteristics of volunteer palliatieve care in Belgium and the role of volunteers in providing care to people with chronic life-limiting conditions.

Background
Due to demographic and epidemiological trends, palliative care is increasingly an issue of public health. Policy makers wish to shift the location of care provision for patients with chronic, life-limiting conditions from the sphere of professional and institutional care to the sphere of the community and emphasize the role of informal caregivers in supporting this new format. Volunteers inhabit an important space in palliative care. They take up several roles, such as trustee, advocate, and intermediate between patient and professional, and patient and family. Volunteers can provide a bridge or link to the community for patients, and provide practical, social, and emotional support to patients and their families.

For professional care staff, volunteers can offer support in their practical tasks. More importantly, however, is the complementary work volunteers perform, amongst which the most important two are (a) donating their time and (b) “just being there.” Volunteers also represent significant decreases in organizational costs.

However, little is known about the magnitude and characteristics of volunteer palliative care in Belgium, and the perspectives of patients, family carers, professional caregivers and volunteers on the roles of volunteers in careing for people with chronic life-limiting conditions. If policy makers wish their reforms to be successful and significant, we must understand the extent and meaning of volunteerism in palliative care.

Aims and methods
The aim of this study is therefore threefold:

1. Identify health care and volunteer organizations providing end-of-life care, describe the magnitude and characteristics of their volunteer care, and the policies and views of these organisations regarding the roles of volunteers. We will do this via a cross-sectional survey, for which we will send questionnaires to the directors of all health care and volunteer organizations recognized by the Agency for Health and Care.
2. Gain insight in perspectives on the roles of volunteer palliative care in the patients’ end-of-life care.We will do this by conducting 20 semi-structured interviews with patients, and by holding 8 focus group discussions with family carers (2), palliative care volunteers (2), treating physicians (2), and with nurses involved in the patient’s care (2).
3. Describe the views of volunteers in careing for people with chronic life-limiting conditions. We will do this by conducting another cross-sectional survey study with a random sample of 1000 volunteers working in the organizations identified in objective 1.

Project group
Steven Vanderstichelen: researcher
Prof. dr. Kenneth Chambaere: supervisor
Prof. dr. Dirk Houttekier: promotor & supervisor (social leave)
Prof. dr. Joachim Cohen: co-promotor
Prof. dr. Luc Deliens: co-promoter
Dr. Yanna Van Wesemael: member