User participation is a family matter: A multiple case study of the experiences of older, hospitalised people and their relatives

Abstract

Aims and objectives: The purpose of this multiple case study was to compare and contrast older people's and their relatives’ experiences of participation in decision-making processes regarding the planning of everyday life after discharge from hospital. Background: Internationally, patient involvement in health services is established to benefit patient health and to improve quality of the services. The literature shows that at hospital discharge, older people would benefit from better communication and more active participation of relatives in the discharge planning. Little research has been carried out on the experiences of patients and relatives as a family in this context, and even less has investigated their participation. Design: This study used a qualitative design with a comparative multicase approach. Participants were recruited from two hospitals in Norway using a purposive sampling strategy. Methods: Semi-structured interviews were conducted with five patients and with six of their relatives. Results: Three patterns of experiences were identified: contradicting experiences; consistent experiences of nonpreferred participation; similar, but separate experiences of user participation. Conclusions: User participation in the planning of everyday life following discharge appeared to be random and limited for both patients and their relatives, and conflicting for the families as a whole. The decision-making processes seemed to be limited to the hospital context and did not include the broader context of everyday life following discharge. Relevance to clinical practice: The results underscore the importance of taking a family perspective when caring for older people. Family meetings might be a useful tool to ensure systematic assessment and integration of the perspectives of both older people and their family in the planning of follow-up care.