Parenting Children with Differences in Sex Development Across Developmental Stages: A Qualitative Study

Background: Parents of children with differences in sex development (DSD) face diagnostic uncertainty, complex decision-making, and concerns regarding long-term psychosocial outcomes. While research has examined parental experiences surrounding diagnosis, less is known about parenting across developmental stages. This study explored parents’ retrospective accounts of raising children with DSD across developmental stages. Methods: We conducted a cross-sectional qualitative study based on semi-structured interviews with 11 parents of eight adolescents and young adults (AYAs) (aged 16–26 years) with various DSD conditions, recruited through specialized services in Norway. The study was informed by phenomenological and hermeneutic perspectives, while reflexive thematic analysis was the analytic method. Results: Three themes captured parents’ long-term experiences. First, parents described variable healthcare experiences, including distress at the time of diagnosis, mixed communication, and inconsistent support during the transition to adult care. Second, parents balanced openness with concerns about stigma, privacy, and their child’s autonomy. Third, parents developed coping strategies to support their child’s well-being and independence, foster a sense of normalcy, and manage emotional and relational challenges over time. Conclusions: Parents’ retrospective accounts described parenting a child with DSD as a process involving changing challenges across developmental stages, shaped by uncertainty, stigma, and shifting relational demands. Parents’ coping was influenced by healthcare communication, continuity of care, social support, and the balance between protection and empowerment. This study highlights the importance of clear information, continuity of care, and planned transition to adult services. Trauma-informed care and shared decision-making may also be relevant approaches, as suggested by previous research.