title: Palliative and end-of-life care in Newfoundland's deaf community.
abstract: The deaf community is a distinct cultural and linguistic community (the uppercase D is a cultural identification). Compared to the general population, the deaf community, as a social group, experiences poorer health status. Deaf people seek care less frequently than the general population and have fewer interactions with the health system. Their encounters with the health system are often characterized by communication difficulties, fear, mistrust, and frustration. Qualitative research was used to explore the experiences of family caregivers who provided end-of-life care for a deaf person. Key findings indicate that the deaf community has limited understanding of their options for palliative and end-of-life care. Communication and health literacy are key barriers to accessing appropriate end-of-life care. Pain and symptom management, consideration of physical environments, and limited access to bereavement care are common issues faced by deaf people when caring for loved ones at the end of life.
authors.affiliation: Faculty of Medicine, Division of Community Health and Humanities, Health Sciences Centre, Memorial University ofNewfoundland, 300 Prince Philip Drive Room 2849, St. John's, Newfoundland and Labrador, Canada. victor.maddalena@med.mun.ca
authors.forename: Victor
authors.initials: V
authors.lastname: Maddalena
authors.forename: Fiona
authors.initials: F
authors.lastname: O'Shea
authors.forename: Myles
authors.initials: M
authors.lastname: Murphy
mesh_terms: D003142:Communication; D003638:Deafness / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009523:Newfoundland and Labrador / Q000453:epidemiology; D010166:Palliative Care; D036301:Qualitative Research; D013727:Terminal Care