Craniofacial conditions (CFC) is a broad term that encompasses a range of congenital conditions affecting the head and skull, and in some cases, other bodily systems. These conditions frequently impact both function and appearance, with severity varying both across and within diagnostic categories. Treatment typically involves long-term follow-up by multidisciplinary teams (MDTs) and often includes surgical procedures that begin in infancy and may continue into adulthood. While the medical management of CFC is well-established, more research is needed to understand how these conditions affect individuals and families in their everyday lives.
This thesis explores the subjective experiences of parents and individuals affected by a CFC, focusing on the challenges related to treatment, appearance, and experiences of support within close relationships. It examines the psychological and emotional impact of multidisciplinary treatment and surgery, as well as experiences of stigma, and the role of social support.
Using a hermeneutic-phenomenological approach, this thesis draws on in-depth interviews with 64 participants, including 48 parents of children with CFC and 16 adults living with CFC. The data were analysed thematically across three qualitative studies, each exploring a distinct aspect of the lived experience of CFC: experiences of multidisciplinary care and appearance-altering surgery, living with a facial difference, and parents’ experiences of how their couple relationship was affected by caring a child with CFC.
The findings shed light on how families and individuals affected by a CFC navigate complex treatment journeys shaped by both medical and psychosocial concerns. Participants emphasised the importance of feeling treated as a human being, as opposed to an interesting medical case within multidisciplinary teams (MDTs), noting that genuine and empathetic care fostered trust and supported better decision making. Appearance-altering surgery was often motivated by the wish to look ‘normal’ to fit in and feel accepted, by others. Decisions about appearance- altering surgery were rarely straightforward and were shaped by hopes and uncertainties. Additionally, the presence of a child with a CFC significantly influenced the couple relationship, revealing both strain and strength. Supportive communication, shared understanding, and shared responsibility emerged as key that helped parents cope with challenges and maintain closeness within their couple relationships.
This study underscores the need for greater attention to the psychological and psychosocial dimensions of surgical treatment for parents and individuals affected by a CFC. It also shed light on the importance of considering the broader context of the child’s environment, including the impact on family and couple relationships. An approach to care that to a larger degree acknowledges the psychosocial aspects of CFC can better support the well-being of children and their families throughout the treatment journey.