Objectives: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence-base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians, and to establish the types of interventions currently being delivered in practice.
Design: Individual interviews with seventeen Clinical Nurse Specialists and nineteen specialist Clinical Psychologists, representing all sixteen UK CL/P surgical sites. Data were analysed using inductive content analysis.
Results: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the lifespan. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically.
Conclusions: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardised assessment of holistic individual and familial wellbeing is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.