Navigating uncertainty together: a participatory mixed-method study of counseling services for couples living with multiple sclerosis.

Introduction: Multiple sclerosis (MS) is a progressive neurological disease that affects not only individuals diagnosed but also their partners and relationships. However, couple-based counseling services and couples' preferences regarding such interventions remain insufficiently studied. The PAART study addressed this gap by exploring the counseling needs of couples living with MS and identifying suitable approaches for outpatient counseling services. Methods: This study applied a participatory health research (PHR) approach involving researchers, practitioners, and people living with MS as co-researchers throughout the project. A sequential qualitative design was conducted in two stages: first, expert interviews (EIs) with counselors from German MS Society service centers; second, virtual focus group discussions (FGDs) with couples living with MS. Findings from the interviews informed the focus of the FGDs. Data were analyzed using qualitative deductive-inductive content analysis based on the participatory DEPICT method. Results: Ten counselors participated in the EIs, and four FGDs were conducted with 16 couples recruited nationwide. Both groups emphasized the importance of couple-oriented counseling, particularly around the time of diagnosis, with relationship-related concerns often outweighing disease-specific topics. Communication difficulties and balancing individual and shared needs emerged as central challenges. Counselors additionally highlighted caregiver burden, personal boundaries, and shame. Across both groups, uncertainty about the future was identified as a key theme. Conclusion: Findings from the EIs and FGDs were highly consistent, underscoring the importance of relationship-focused support in addressing present- and future-oriented challenges associated with MS. The results suggest that healthcare professionals should be prepared to address couple dynamics sensitively and effectively. Integrating couple-oriented counseling into outpatient psychosocial and rehabilitation services may strengthen relationship resilience, improve shared coping strategies, and support the long-term well-being of both partners. Clinical trial registration: https://www.drks.de/DRKS00031739, Identifier DRKS00031739.