Palliative care on Manitoulin Island - Views of family caregivers in remote communities

OBJECTIVE To describe family caregivers' experiences with palliative care s ervices in rural communities. DESIGN Qualitative study. SETTING Manitoulin Island, Ont. PARTICIPANTS Thirteen family caregivers of 12 deceased patients who had rec eived palliative care services. METHOD Twenty-five family caregivers were recruited by mail and local newsp aper. Eight were excluded because they lived off the Island or were too rec ently bereaved; one declined an interview; and three were excluded by resea rchers. Initial contact was by telephone; those retained (13 people) were i nterviewed at home. Interviews were conducted by the same researcher using a semistructured interview guide. All interviews were audiotaped and transc ribed, and content was analyzed. MAIN FINDINGS Three interwoven themes were identified: access to services, quality of services, and support and caring. Hospital and community-based s ervices were accessed with ease at the local level; difficulties were noted when accessing services in tertiary care centres. Participants were genera lly grateful for and pleased with services received. Two areas of concern r aised by participants were communication and pain and symptom control. Part icipants suggested to the Ministry of Health ways to improve rural palliati ve care services. More public funding for in-home palliative care services was identified as a priority. CONCLUSION Participants thought good services and supportive care at the lo cal level made up for difficulties in accessing and using palliative servic es in tertiary care centres. Community spirit and culture were seen as maki ng situations more bearable.