Patient Participation in Home Care: A Longitudinal Exploration of Experiencing, Refraining, and Losing Involvement

Ensuring safe and personalized healthcare requires that patients have opportunities to express their concerns and influence their treatment decisions, which is a core value in healthcare. Such involvement is crucial for realizing the ideal of ageing in place. Despite efforts to increase patient participation, significant challenges persist, especially among older people with complex health needs.

The aim of this study was to explore an older adult's experiences of patient participation within a care triad, as reflected in the interactions and perspectives of the older person, healthcare professionals, and a family caregiver in the Norwegian home-care context.

This study employed a longitudinal single-case study with embedded units. Over 1 year, repeated interviews were performed with an older adult, his daughter, his general practitioner, and his responsible home-care nurse. Content analysis was used to analyze the data.

The analysis resulted in three themes representing the participants' experiences and points of view regarding the older adult's participation in care: to experience participation, to refrain from participation, and to lose one's participation.

The findings indicate that the older adult desired involvement despite occasional reluctance and that his participation was affected by interactional and contextual factors. Professionals must realize that the starting point of patient involvement is the patient's perspective and understanding of care needs, which the professionals have a joint responsibility to meet.