title: A desire to be seen: family caregivers' experiences of their caring role in palliative home care.
abstract: Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.
authors.affiliation: Valdemarsviks vårdcentral, Närsjukvården i Ostra Ostergötland, Landstinget i Ostergötland, Brogatan 4, S 615 30 Valdemarsvik, Sweden. marit.linderholm@telia.com
authors.forename: Märit
authors.initials: M
authors.lastname: Linderholm
authors.forename: Maria
authors.initials: M
authors.lastname: Friedrichsen
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017028:Caregivers; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care; D036301:Qualitative Research; D012189:Retrospective Studies; D013315:Stress, Psychological; D013548:Sweden