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

Abstract

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.

Provision of Care for Families Affected by Craniofacial Conditions: The Views of Nonspecialist Health Professionals

“…Participants felt that both parties could benefit from an increase in joint working, through the sharing of knowledge and resources, and by conducting combined visits with families where indicated. Such an approach may also help to improve the continuity of care and avoid the potential for conflicting advice to be given to families (Searle et al, 2016; Costa et al, 2019; Stock et al, 2019c; Stock et al, 2019d).…”

“…Following the birth, the late diagnosis of cleft palate, conflicting information surrounding feeding methods, and a lack of support during home-based care have also been described by parents (Lindberg and Berglund, 2014; Stock and Rumsey, 2015; Tierney et al, 2015; Searle et al, 2016; Costa et al, 2019). In addition, specialist health professionals working within craniofacial teams have communicated that much of their initial consultations with parents are spent trying to dispel myths, correct inaccuracies, and reduce parental distress, as a result of negative interactions with nonspecialist health professionals (Stock et al, 2019d).…”

Designing an mHealth Intervention for People With Visible Differences Based on Acceptance and Commitment Therapy: Participatory Study Gaining Stakeholders’ Input

“…ACT has been applied to mHealth interventions, with evidence for ACT-based mHealth in enhancing well-being and valued action [13], reducing social anxiety in a clinical population (alongside internet-delivered treatment) [14], and enabling smoking cessation [15]. Psychologists across Europe report using ACT with patients who have visible differences and note its suitability for the population [16,17]. A detailed exposition of how ACT fits the population's needs is given by Zucchelli et al [18].…”

Parent‐reported socioemotional and cognitive development in children with a cleft lip and/or palate at 18 months: Findings from a UK birth cohort

“…Physical anomalies in addition to CL/P could therefore indicate that further screening for socioemotional and cognitive development is necessary. Further, genetic testing is advocated in cases where developmental concerns are suspected (Stock, Zucchelli, Hudson, Kiff, & Hammond, 2019), and the ASQ could therefore be a useful tool in helping to identify those children who may be eligible.…”