Preferences and concerns for care needs in advanced Parkinson's disease: a qualitative study of couples

Aims and objectives To explore how couples with Parkinson's disease discuss their needs, concerns and preferences at the advanced stages of illness. Background The majority of care for people with Parkinson's disease is provided at home by family members. Parkinson's disease is characterised by a slow progressive decline with care needs often exceeding a decade. Design A descriptive qualitative study with 14 couples. Methods Data were collected on two occasions over a one‐month period using semi‐structured interviews, with both individual and couple interviews. Data were analysed thematically by the research team. Results All participants discussed the strong desire to remain in their homes for as long as possible. For the people with Parkinson's disease, placement to long‐term facilities was not an option to be considered. For spouses, there was an acknowledgement there may come a time when they could no longer continue to provide care. Concerns regarding falls, choking, voice production, financial strain and need for prognostic information from providers were influences on what they believed the future would hold and the decisions they would need to make. Conclusions The need for improved communication between providers and Parkinson's disease couples is evident. Interventions to support the couple in their discussions and decision‐making regarding remaining in the home or not, and options to support advanced care needs are required. Relevance to clinical practice Nurses can help support decision‐making by providing tangible information regarding the advanced stages of Parkinson's disease including adequate prognostic information.