4.1 Article

Family members' expressions of dignity in palliative care: a qualitative study

Journal

SCANDINAVIAN JOURNAL OF CARING SCIENCES
Volume 35, Issue 3, Pages 937-944

Publisher

WILEY
DOI: 10.1111/scs.12913

Keywords

dignity; family members; interviews; palliative care

Categories

Funding

  1. Kamprad Family Foundation for Entrepreneurship, Research and Charity [20152002]

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Family members' expressions of dignity in palliative care are multifaceted and complex, involving living as a respected human being, maintaining identity, feeling connected to others, and adapting to new situations. Two contextual factors, the two-headed paradox and reciprocal impact, influence family members' dignity in palliative care.
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. Thetwo-headed paradoxmeans that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again.Reciprocal impactmeans that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.

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