Breathlessness self-management: Using realist review to develop theory and work with stakeholders to co-design an implementation strategy

Background: Evidence supports the benefits of breathlessness self-management interventions (SMIs) for people with long-term conditions, however implementation of SMIs is not systematic and the emphasis of SMIs is usually focussed on the individual with little attention paid to contextual factors, including those that lead to health inequalities. Methods: Realist Review using five iterative stages (programme theory development, search for evidence, selection of sources, data extraction, synthesis) to develop (using sources about SMIs for any long-term condition) and test (using sources about breathlessness management) to underpin development of the implementation strategy. To facilitate understanding, theory development took the form of ‘if, then, because’ explanatory statements, grouped using the framework of self-management of long-term conditions developed by Lawless and colleagues (2021). We held three co-design workshops with stakeholders including people living with breathlessness and their carers, clinicians and commissioners, in which we discussed and refined the explanatory statements and, drawing on personal and professional experience, develop practical components to enable implementation. Results: 32 sources informed the development of 53 theoretical ‘if, then, because’ explanatory statements about implementation relating to categories defined in the Lawless review: personal resources, stressors, informal social resources, formal social resources, and temporal & spatial context. Implementation of SMIs for breathlessness is impacted by the personal resources of, and the stressors on, the individual and is also greatly influenced by the following factors: how others (including family and clinicians) view and interact with them, the priorities of healthcare organisations and the wider context in which they live. Involving stakeholders in the development of this theoretical understanding laid the foundations for co-design of practical implementation resources. Conclusion: Realist Synthesis and Intervention Mapping enabled integration of theory and stakeholders’ knowledge in developing an implementation strategy for breathlessness SMIs. SMI implementation strategies should address individual, family, clinician, organisational and societal factors.