A desire to be seen: family caregivers' experiences of their caring role in palliative home care

Cancer Nurs. 2010 Jan-Feb;33(1):28-36. doi: 10.1097/NCC.0b013e3181af4f61.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological
  • Adult
  • Aged
  • Caregivers*
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Home Care Services*
  • Humans
  • Male
  • Middle Aged
  • Palliative Care*
  • Qualitative Research
  • Retrospective Studies
  • Stress, Psychological*
  • Sweden