Striking a Balance: A Qualitative Study of Next of Kin Participation in the Care of Older Persons in Nursing Homes in Sweden

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.