Self-management Interventions for Care Partners of Individuals with Neurodegenerative Movement Disorders: A Scoping Review

Objective(s): To investigate the components of self-management interventions involving care partners of individuals with NMDs. The review seeks to describe the key components, categorize different types and approaches using the Practical Reviews in Self-Management Support (PRISMS) Taxonomy, and generate recommendations for future self-management interventions.

Data Sources: Five electronic databases were searched: SCOPUS (Elsevier), CINAHL (EBSCO host Interface), MEDLINE (Ovid Interface), Psych INFO, and Embase (Ovid interface). The search was translated into the databases using a combination of subject headings and keywords to represent three main constructs: ‘self-management interventions’ AND ‘care partners’, AND ‘neurodegenerative motor disorders’.

Study Selection: The study selection process consisted of two stages: title and abstract screening, and full-text screening. Total agreement was achieved between the two reviewers throughout all stages of the screening process. This thorough screening method ensured the reliability and comprehensiveness of the study selection process. Following the screening process, 34 articles were included in the analysis from the initial 7224.

Data Extraction: A study specific data extraction table was developed in Covidence to facilitate the charting process. The extracted variables included: general information about the article, study description, population characteristics, outcome measures and findings. Intervention characteristics were obtained (intervention setting, delivery method, intervention design, intervention orientation). Data extraction was guided by the PRISMS taxonomy, the Taxonomy of Everyday Self-Management Strategies and the Template for Intervention Description and Replication framework.

Data Synthesis: The primary author utilized descriptive approaches to summarize the extracted data into a comprehensive table. The table included descriptions of the study designs, countries the studies were conducted in, intervention settings, intervention characteristics (program personnel, structure, format) and materials provided. Descriptive statistics were used to describe the frequency of categories in the extraction table. The results were examined to identify trends in program components and characteristics of self-management interventions, as well as gaps in intervention delivery and content.

Conclusions: The findings from this scoping review provide a comprehensive understanding of self-management interventions that involve care partners of individuals with NMDs. The review identified various components of these interventions, including their orientation, structure, format, materials, TEDSS domains, PRISMS components. Future research should focus on developing self-management interventions that are inclusive of various NMDs, tailored to the specific needs of care partners, integrate communication training and dyadic coping strategies as well as determine which PRISMS components are the most effective and/or preferred by care partners.

Author(s) Disclosures: Authors do not have any conflicts of interest to disclose.