Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom

Stock, Nicola Marie; Zucchelli, Fabio; Hudson, Nichola; Kiff, James D.; Hammond, Vanessa

Abstract

© 2019, American Cleft Palate-Craniofacial Association. 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 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. Results: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. 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 standardized assessment of holistic individual and familial well-being 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.

• Journal Article Type: Article
• Acceptance Date: Jun 18, 2019
• Online Publication Date: Aug 20, 2019
• Publication Date: Feb 1, 2020
• Deposit Date: Jun 21, 2019
• Publicly Available Date: Jun 21, 2019
• Journal: Cleft Palate-Craniofacial Journal
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 57
• Issue: 2
• Pages: 186-197
• DOI: https://doi.org/10.1177/1055665619868331
• Keywords: cleft lip and palate, chronic health conditions, risk and protective factors, psychosocial intervention, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/1492745
• Additional Information: Additional Information : © 2019. Reprinted by permission of SAGE Publications
• Contract Date: Jun 21, 2019