Psychological, Medical and Educational Experiences of Adolescents With Orofacial Clefts in South Australia.

OBJECTIVE

Adolescents living with orofacial clefts experience a range of physical, psychological and educational challenges that can impact their daily lives and overall wellbeing. This qualitative study aimed to understand the lived experiences of children and adolescents with orofacial clefts outside the home environment and to explore the role of the cleft multidisciplinary team in providing support.

METHODS

Semi-structured interviews were conducted with 11 participants aged 10-19 years at a paediatric tertiary hospital.

RESULTS

Thematic analysis of the interviews revealed a spectrum of experiences, with adolescents reporting negative social interactions, extended treatment timelines and challenges associated with comorbid conditions and inconsistent support from educators. Older adolescents demonstrated resilience and described coping strategies fostered by supportive family dynamics. Positive experiences were linked to clear and proactive communication from the cleft team, particularly in helping schools and peers understand cleft-related needs. Participants highlighted the value of emotional support and expressed a desire for more comprehensive communication from healthcare professionals.

CONCLUSION

Despite challenges, families expressed overall gratitude for the care received. These findings emphasise the need for tailored, holistic interventions from cleft teams, including the provision of clear educational resources for adolescents and their broader support networks.