Collaborative self-management support in chronic conditions: representations of healthcare professionals, patients and caregivers in Auvergne-Rhone-Alpes, France

Abstract

Introduction: Chronic illness is a challenge for healthcare systems, as it requires long-term coordination of care among involved healthcare professionals, the patients themselves, and their caregivers. To maintain their quality of life, patients need to adapt daily routines to be able to follow specific medical treatment, self-care, dietary, or physical exercise recommendations. They may be supported by healthcare professionals (HCPs) of different specialties, each independently providing self-management support (SMaS) at different moments, often resulting in fragmented, redundant, conflicting or insufficient support. Care coordination initiatives have been pilot-trialed and advanced for larger scale implementation. Translating these initiatives into routine care needs to consider stakeholder representations, which can vary across cultures and healthcare systems. Yet little is known about how HCPs, patients, and their carers experience and view collaborative SMaS outside pilot-trial settings. We aimed to explore stakeholder representations of current practices, limitations and solutions in three conditions (asthma, breast cancer, and post-stroke long-term care), in the Auvergne-Rhône-Alpes region, France. This was part of a wider community-based participatory research project aiming to co-construct a framework of collaborative SMaS applicable to integrated care initiatives in the area. Methods: Qualitative semi-structured interviews have been conducted with participants from patient and professional organisations. Qualitative thematic and lexicometric analyses are performed on verbatim transcripts to develop a conceptual framework which will be further refined with stakeholders and used for developing specific context-adapted interventions for integrating SMaS services. Results: We have so far conducted 65 interviews with general practitioners, pharmacists, nurses, specialists, psychologists, physiotherapists, speech therapists, patients and carers (average duration 50 minutes); 65 additional interviews are planned. The results so-far indicate an acute awareness from most participants of the necessity of collaborative care, and a substantial perceived gap between the current care fragmentation they experience, particularly between secondary and primary care, and the ideal scenario of integrated care. Fragmentation is particularly harmful to self-management as patients and carers are burdened by coordination tasks and may lack the sustained support to modify their behaviours, although individual interventions may stimulate positive change. Common HCPs concerns are the limited system-level incentives for collaborative care, the substantial administrative burden of SMaS initiatives, and the lack of accessible coordination tools. Discussion and Conclusion: Identifying what collaborative care and self-management support represents for stakeholders and the solutions they consider appropriate to implement is a first step towards evidence- and practice-based sustainable integration. This study is to our knowledge the first to describe current collaborative SMaS practices for chronic conditions in France. Lessons learned: There are substantial similarities among conditions in representations of collaborative SMaS and solutions proposed, however specificities in discourse need to be considered when developing integrated care initiatives. Limitations: We aimed for maximum variation sampling, however self-selection bias was possible and the discourse we recorded might not be representative for the larger stakeholder population. Preliminary results need to be further tested, and comparisons across subsamples performed. Suggestions for future research: A quantitative large-scale survey is necessary for mapping the variation of collaborative SMaS representations of healthcare users and providers.

Keywords

• self-management
• collaborative care
• qualitative study
• representations