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. © 2010 Lippincott Williams & Wilkins.
CITATION STYLE
Linderholm, M., & Friedrichsen, M. (2010). A desire to be seen: Family caregivers’ experiences of their caring role in palliative home care. Cancer Nursing, 33(1), 28–36. https://doi.org/10.1097/NCC.0b013e3181af4f61
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