Self-management interventions involving care partners of individuals with neurodegenerative movement disorders: a scoping review

This scoping review aims to explore the components of existing self-management interventions involving care partners of individuals with neurodegenerative movement disorders (NMDs). The review seeks to describe the key components, categorize different types and approaches using the PRISMS taxonomy. A comprehensive search was conducted in five databases: SCOPUS, CINAHL, MEDLINE, PsycINFO, and Embase. Articles were included if they involved self-management interventions for adult care partners of individuals with NMDs. Data extraction was guided by the PRISMS, TEDSS and TIDieR frameworks, focusing on intervention characteristics, components, outcome measures, theories, and formats. The review included 34 articles, with most interventions targeting Parkinson’s Disease. Interventions varied widely in structure, delivery format, setting and content. Psychological and internal strategies were the most frequently utilized components. Notably, only 11 interventions were specifically designed for care partners. This scoping review provides key insights into the diverse elements of self-management interventions for NMDs, including their structure, delivery format, and components. It highlights the lack of comprehensive dyadic interventions that support both individuals with NMDs and their care partners. Future research should explore the integration of personalization, communication training and dyadic coping strategies. Rehabilitation professionals should develop and evaluate self-management interventions across a wider range of NMDs, using personalized approaches in both content and delivery to better meet the functional, emotional, and contextual needs of individuals and their care partners.Interventions should incorporate opportunities for patients and care partners to practice shared strategies such as communication techniques, intimacy-building, and joint coping skills that support collaborative disease management in everyday life.There is a need for dyadic programs that holistically address the needs of patients, care partners, and the partnership between them by integrating both perspectives into the design and delivery of self-management interventions.Researchers should explore the use of the PRISMS taxonomy to identify which components are most effective and meaningful for individuals with NMDs and their care partners, to guide intervention refinement and implementation. Rehabilitation professionals should develop and evaluate self-management interventions across a wider range of NMDs, using personalized approaches in both content and delivery to better meet the functional, emotional, and contextual needs of individuals and their care partners. Interventions should incorporate opportunities for patients and care partners to practice shared strategies such as communication techniques, intimacy-building, and joint coping skills that support collaborative disease management in everyday life. There is a need for dyadic programs that holistically address the needs of patients, care partners, and the partnership between them by integrating both perspectives into the design and delivery of self-management interventions. Researchers should explore the use of the PRISMS taxonomy to identify which components are most effective and meaningful for individuals with NMDs and their care partners, to guide intervention refinement and implementation.