Medication Decision-Making and the Medicines’ Pathway in Nursing Homes: Experiences and Expectations of Involvement of Residents and Informal Caregivers

Abstract

Background: Information on how residents and their informal caregivers are involved in the medicines’ pathway in nursing homes is scarce. Likewise, it is not known how they would prefer to be involved therein. Methods: A generic qualitative study using semi-structured interviews with 17 residents and 10 informal caregivers from four nursing homes was performed. Interview transcripts were analyzed using an inductive thematic framework. Results: Four themes were derived to describe resident and informal caregiver involvement in the medicines’ pathway. First, residents and informal caregivers show behaviors of involvement across the medicines’ pathway. Second, their attitude towards involvement was mainly one of resignation, but variation was noted in their involvement preferences, ranging from minimal information to active participation needs. Third, institutional and personal factors were found to contribute to the resigned attitude. Last, situations were identified that drive residents and informal caregivers to act, regardless of their resigned attitude. Conclusions: Resident and informal caregiver involvement in the medicines’ pathway is limited. Nevertheless, interviews show that information and participation needs are present and show potential for residents’ and informal caregivers’ contribution to the medicines’ pathway. Future research should explore initiatives to increase the understanding and acknowledgement of opportunities for involvement and to empower residents and informal caregivers to take on their roles.