The painful spot: psychological support for the couple relationship when parenting children with undiagnosed genetic syndromes (SWAN)

Introduction. Many children with syndromic conditions remain undiagnosed despite genomic technology advances, known as SWAN (syndrome without a name). Thousands of children with SWAN are born annually in the UK, with 4,000 families registered with SWAN UK. The complexity and severity of undiagnosed children's needs cause huge stress and isolation for parents, who lack a diagnostic label to communicate with others. A healthy couple relationship is crucial as an emotional resource for parents and the child. The UK social care system does not offer psychological support for these parents. Genetic Alliance UK collaborates with Rareminds to provide free counselling for parents with undiagnosed children, but demand exceeds supply. Materials and methods. Ethical approval was granted by Manchester Metropolitan University (Ethos ID 50777). Semi-structured interviews were conducted online with three couples who completed at least six counselling sessions by Rareminds and three therapists who each provided at least four full counselling courses. A thematic analysis assessed views of parents/carers and therapists. Results. While proving a demanding caring role at home, parents must also navigate complex systems to secure support for their children, facing isolation and stress impacting their relationship and family life. Peer support is limited, and private therapy is hard to access. Rareminds counselling validates parents' needs and supports the couple relationship as an emotional resource. Counselling positively impacts individuals, couples, and families. Therapists help couples address the 'painful spot'—issues couples avoid discussing—facilitating understanding and constructive sessions. Conclusion. The study highlights the pressure on couples parenting children with undiagnosed genetic syndromes and the positive impact of counselling on individuals, couple communication, and family dynamics. Therapists emphasize the importance of addressing difficult issues ('the painful spot') without judgment. Counselling helps couples feel heard, respected, and develop new ways to manage challenging dynamics and coping strategies. Key messages. Parenting children with undiagnosed genetic syndromes can cause significant stress and isolation for parents, impacting couple relationships. Counselling provided by Rareminds offers crucial psychological support, improving individual well-being, couple communication, and family dynamics. Therapists help couples address difficult issues ('the painful spot'), enabling understanding, respect, and new coping strategies.