title: Volunteers in palliative care make a difference.
abstract: Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. In four sequential studies, information was gathered from focus groups (n = 22), a survey (n = 237), individual interviews (n = 6), and an Internet panel (n = 1,712). The focus groups revealed that volunteers can make the last phase of life less stressful for family caregivers by offering practical and emotional support, and this was confirmed by the survey; however, one improvement is needed: every volunteer support should be concluded with a closing contact. The individual interviews showed that in the end-of-life stage the crucial decision is whether the patient can remain at home, not whether the caregiver needs volunteer support; and in such extreme situations, it is understood that volunteer support must involve more than one volunteer. The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.
authors.affiliation: Department of Tranzo, Tilburg University, Tilburg, Netherlands.
authors.forename: Katrien G
authors.initials: KG
authors.lastname: Luijkx
authors.forename: Jos M G A
authors.initials: JM
authors.lastname: Schols
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003258:Consumer Behavior; D005260:Female; D017144:Focus Groups; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010166:Palliative Care / Q000458:organization & administration*; D011788:Quality of Life; D012944:Social Support; D014838:Volunteers