The psychosocial impact of living with cloacal malformations in young people: A qualitative study

Cloacal malformations are rare congenital condition affecting females, characterised by the convergence of the urinary tract, reproductive tract, and rectum into a single channel. Complex medical interventions are often required from the neonatal period onwards, with potential lifelong implications for bowel, urinary, and gynaecological health. Few centres have substantial experience in treatment and long-term support. Research on the lived experience and psychosocial impact of cloacal malformations is limited, particularly during the transition from adolescence to adulthood. This qualitative study explored how young people born with cloacal malformations live with the condition and what their experiences are of past and ongoing treatment.

One-to-one interviews were conducted and analysed using grounded theory and major themes identified.

Eight participants (aged 16-38) from the UK, Central Europe, North America and Australia were interviewed.

Three themes were developed. Sense of the bodily self highlights the impact of treatment and symptom management on body perception and the development of sexual identity. Medical complexity reflects awareness of the complexity of the condition and treatment, interactions with medical professionals, self-management and vulnerability to medical anxiety and trauma. Growing up with the impact of cloaca explores how cloacal malformations are integrated into identity, including decisions around disclosure, and how connecting with others with cloaca offers sense-making opportunities.

Growing up with a cloacal malformation and the necessary treatments can significantly impact long term psychological wellbeing and identity formation. It is recommended that psychological aspects are considered as part of routine surgical and clinical care from first contact across the lifespan.