Rationale: Urinary incontinence (UI) is a common condition in women that leads to involuntary passing of urine. UI can impact social and mental wellbeing due to the associated stigma, which underlines the importance of inclusive research. Co-production research emphasises shared decision-making and collective knowledge; there is a lack of research into the realities of this approach, especially focused on physical illnesses. The Leeds Older women Urinary Incontinence Self-mAnagement (LOUISA) study is the wider project within which the current study is situated, bringing together these components through co-production of a self-management intervention for UI. The current study focuses on the individual perspectives in these areas, in terms of living with UI and stakeholder experiences of co-producing UI research.
Aims: 1) To explore older women’s perceptions of living with UI (phase 1); 2) to examine the principles of co-production within the context of the LOUISA project (phase 2).
Method: Phase 1 utilised an interpretative phenomenological approach (IPA). A qualitative meta-synthesis was conducted to explore gaps in existing literature, supplemented by interviews with 3 women. For phase 2 a scoping review was conducted to map co-production literature and interviews with LOUISA stakeholders (academic, healthcare provider, service user, funder) and one meeting observation was conducted.
Results: The key themes from phase 1 are embarrassment and normalisation. Embarrassment characterised the lived experience of UI, permeating across several themes e.g. childhood experiences and coping strategies. The normalisation of UI as it relates to perceptions of age was another key finding, as UI was often believed to be an ordinary part of ageing. Key themes from phase 2 relate to concepts of co-production and power differentials. Barriers and facilitators to co-production were identified and tensions between theoretical and practical aspects were considered. Power differentials in the context of co-production were also identified as an important consideration.
Conclusion: This study provides insight into the lived experience of UI from the perspective of older women living in the UK who have either never sought professional help or have previously engaged with medical services but have since disengaged. Understanding the lived experience of UI is integral to providing appropriate support. This study also provides recommendations for co-producing research for stigmatised long-term conditions (LTCs) similar to UI, based on the experiences of stakeholders involved in an ongoing project.
