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The Encounter Between Informal and Professional Care at the End of LifeÖrebro University, Örebro, Sweden, inger.james{at}oru.se
Örebro University, Örebro, Sweden, and Ersta Sköndal University College, Stockholm, Sweden
Ersta Sköndal University College, Stockholm, Sweden, and Örebro University, Örebro, Sweden The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.
Key Words: caregiving • informal • end-of-life issues • families • caregiving • health care professionals • health care • provider perspective and behavior • health care • users' experiences • hermeneutics
This version was published on February
1, 2009 Qualitative Health Research, Vol. 19, No. 2,
258-271 (2009) This article has been cited by other articles:
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