Exploring the experiences of people with urogynaecology conditions in the UK: a reflexive thematic analysis and conceptual model

BACKGROUND: Urogynaecological conditions, such as pelvic organ prolapse, urinary incontinence, and urinary tract infection, can have a profound impact on people’s lives. The Independent Medicines and Medical Devices Safety Review highlights missed opportunities to prevent harm when patient voices are not incorporated into healthcare policy and practice. This resonates with the Women’s Health Strategy for England. The National Institute for Health and Care Research (NIHR) Policy Research Programme funded this in-depth qualitative exploration of people’s experiences of living with urogynaecological conditions, and of seeking healthcare treatment, to inform health and social care improvements in the UK. METHODS: We conducted in-depth interviews online or by telephone (April 2021-December 2021) and used reflexive thematic analysis to develop themes that cut across urogynaecological conditions. RESULTS: We spoke to seventy-four adults aged 22–84 across a range of backgrounds and lived experiences of urogynaecological conditions, including pelvic organ prolapse, urinary incontinence and persistent or recurring urinary tract infection. Eight themes were developed: [1] I get no respite from my own body; [2] I feel confined and separated; [3] I can no longer be ‘me’; [4] I am constrained by stigma, shame and silence; [5] I feel fragmented and lost in the healthcare system; [6] I need to be heard, believed, and valued; [7] I need respect as an equal partner in healthcare; and [8] (Re)connected to a more open community. CONCLUSIONS: High quality care focuses on the whole person rather than their body parts. Openness and candour support a shared decision-making model of care. A culture of shame can have a negative impact on access to health care and recovery.