Wenjie Zhao, Peiyu Zhao, Zongshuai Liu, Zisong Wang, Sinuo Tan, Minghan Li, Shijie Lv, Xin Wang, Jie Li, Wenjun Yuan, Wenying Kuang
ObjectiveTo explore the psychological, family-related, interpersonal, and treatment-related experiences of individuals with cleft lip and/or palate (CL/P) across developmental stages using a large-sample qualitative approach.DesignQualitative study using semi-structured interviews and thematic analysis with an iterative coding process.SettingParticipants were recruited in a clinical care context involving individuals receiving or having received cleft-related care.ParticipantsA total of 172 participants aged 8-26 years with a diagnosis of CL/P were included. Consecutive sampling was used to capture heterogeneity in age, treatment experience, and social background.ResultsFour interrelated themes were identified: mental functioning and body image, family dynamics, interpersonal functioning, and treatment experiences. Some participants reported little psychological impact, often normalizing their condition or emphasizing coping strategies. Most described persistent self-consciousness, social withdrawal, or reduced self-worth. In addition to the commonly reported themes of communication and emotional support, some participants (n = 11) reported delayed disclosure of their diagnosis by parents, which was experienced as confusing or emotionally unsettling. Peer teasing and misunderstanding by teachers were frequently reported, particularly during adolescence, intensifying concerns about appearance and speech. Treatment-related distress was more commonly associated with uncertainty and perceived dismissiveness in healthcare communication than with procedures themselves.ConclusionsPsychosocial adjustment in CL/P is shaped by the dynamic interplay of developmental context, family communication, social environments, and clinician-patient interactions. Findings highlight the importance of age-sensitive psychosocial support, open and ongoing family communication, and emotionally responsive healthcare communication to improve patient-centered cleft care.