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 (PD) discuss their needs, concerns, and preferences at the advanced stages of illness. Background: The majority of care for people with PD is provided at home by family members. PD is characterized 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 utilizing semi‐structured interviews, with both individual and couple interviews. Data were analyzed 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 PD, 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 PD 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 PD including adequate prognostic information. Advanced PD 2 What does this article contribute to the wider global clinical community? >\Preferences for placement to long‐term care facilities are different among people with PD and their spouses. Beliefs about the future and decision making are influenced by concerns about physical complications including falls and choking and the need for prognostic information from health care providers. The need for improved communication between health care providers and PD couples is reported. Nursing interventions to support the couple in their discussions and decision making regarding placement and options to support advanced care needs are required.
Author's final draft after peer review
Habermann, Barbara, and Ju Young Shin. "Preferences and concerns for care needs in advanced Parkinson's disease: a qualitative study of couples." Journal of clinical nursing 26.11-12 (2017): 1650-1656.