Next of kins perceptions of the meaning of participation in the care of older persons in nursing homes: a phenomenographic study

Background Being involved in the care of a loved one is a desire of many next of kin. However, according to several studies of the perceptions of nursing home staff, the involvement of next of kin is not an obvious part of care. To be able to involve next of kin in care at nursing homes, the perceptions of what participation means are an important piece of knowledge. The aim of this study was therefore to describe variations in next of kins perceptions of the meaning of participation in the care of older persons living in nursing homes. Methods Eighteen next of kin of older persons living in ten nursing homes in Sweden were recruited for interviews. The study design was based on a phenomenographic approach, focusing on the qualitatively different ways in which a person perceives, experiences or conceptualises a phenomenon or certain aspect of reality. Results Five categories emerged from analysis of the interviews, representing the next of kins perceptions of the meaning of participation in the care of older persons in nursing homes: be present; communicate; monitor; do practical tasks; and to represent. The next of kin expressed meanings that belonged to more than one category, and the categories were interdependent. Conclusions Our results indicate that there are several meanings of next of kins perceptions of participation at nursing homes. Nursing home staffs knowledge of these perceptions is important to enable next of kin to participate according to their own preferences.Funding Agencies|Swedish Research Council; Vardal Foundation; Greta and Johan Kock Foundation; Ragnhild and Einar Lundstrom foundation; Ribbingska Memorial Foundation