Are We Together in This? Relationship Experiences of Parents of Children with Craniofacial Anomalies

Objective The birth of a child with a craniofacial anomaly (CFA) can have a profound psychological impact on the family and the parental relationship. The purpose of this study was to qualitatively investigate how a child's CFA condition affected parents' couple relationship. Setting All patients with a CFA are followed-up by the National Unit for Craniofacial Surgery, a specialized and multidisciplinary team. Hence, participants were recruited within a centralized treatment setting. Design We used a qualitative approach to explore the relationship experiences of parents of children with CFAs. The interviews were analysed using a hermeneutic-phenomenological approach. Participants The study included 13 parents, nine mothers and four fathers of children with a range of different CFAs. At the time of the interview, 10 participants were married, one was cohabiting, and two were divorced. Results Most participants perceived their partners as committed and engaged in caring for their affected child and involved in the family's everyday life, and described a strengthened relationship to their partner after the child with a CFA was born. However, some participants struggled in their relationships with their partners, and did not receive the comfort and support they needed during this critical time, leading to feelings of distance and loneliness. Conclusions Craniofacial teams should be mindful of the importance of the environment surrounding the child, such as parental relationship and family function. Therefore, a comprehensive approach should be included in team-based care, and couples and families in need of extra support should be referred to relevant specialists.