Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: a qualitative study nested in a randomized controlled trial

Background and aims: We undertook a multicenter randomized controlled trial to assess the effectiveness of a home‐based palliative approach for adults with severe multiple sclerosis (MS) and their caregivers. Concurrently, we performed a qualitative study to investigate the experiences of the patients, their caregivers, patient referring physicians, and the teams who delivered the intervention. Our aim was to explore the strengths/challenges of the intervention, and circumstances that may have influenced its efficacy. Methods: We performed semi‐structured interviews with 12 patients and 15 informal caregivers (maximum variation strategy), two focus groups with patient referring physicians (four participants each), and one with the teams (nine participants). Results: From data analysis (framework method) 38 subcategories emerged, grouped into 12 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patientcaregiver dyads. Limitations were: factors related to the experimental design; to the intervention; team issues; and external factors. The referring physician focus groups provided little experiential data. Conclusion: The intervention reduced patient symptoms and sense of isolation of the dyads. The indirect role of the teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, demanding administrative procedures, and lack of networking facilities. These findings suggest two major requirements for home palliative care to be effective in this patient population: teams well‐connected with MS rehabilitation services, and care delivered over the long‐term, with variable intensity.