Level 5
Psychosocial specialist with appropriate experience
Coordination and supervision of psychological care
Complex interventions
Level 4
Clinical or health psychologists
Preparation for surgical interventions and post-operative support
Other ‘routine’ interventions
Level 3
Trainee psychologists
Screening for psychological need/distress
Routine audit
Level 2
Team members with additional training
Identification of psychological need in patients and families
Provision of information and support for families
Level 1
All cleft team members
Support and reassurance
Delivery of psychological care agenda
Consideration of psychological factors in treatment decision-making
Some lay-led organisations have developed campaigns and interventions designed to reduce societal pressures on those with a visible and/or audible ‘difference’ (see, e.g. Changing Faces: www.changingfaces.org). These have included ‘camps’ and workshops for young people with cleft and other visible anomalies designed to offer a safe and positive environment in which self-confidence, self-esteem, peer support and practice in relationship skills can be fostered (see, e.g. Changing Faces, The Cleft Lip and Palate Association and About Face; Tiemens et al. 2006). The impact of these activities remains to be fully evaluated.
Although slow progress towards the comprehensive provision of psychological care is being made, these resources remain the exception rather than the rule, particularly for adults and for patients and families who do not have regular access to care teams. In exploring the potential of other ways of delivering support, online interventions are showing great promise (see, e.g. Face IT, designed for adults (www.faceitonline.org.uk) and YP Face IT (www.ypfaceit.co.uk)). These interventions could be supervised by a cleft team member with appropriate training (Level 2 or 3) or, in suitable cases, self-administered.
45.7 Conclusions
While many people affected by a cleft are well adjusted, this population has an increased risk for a range of poorer psychological outcomes compared to their non-affected peers. Research efforts should be doubled and redoubled, particularly in relation to the identification of factors contributing to resilience in children and young people and in order to clarify the ongoing impacts of cleft in adulthood. The detail of the experience of growing up with and living in the aftermath of cleft and its treatment should be better understood through prospective longitudinal research. Psychosocial interventions should be designed, implemented and evaluated, and the routine provision of psychosocial care across the lifespan should be promoted in order to optimise outcomes and to meet changing needs over time.
References
Appearance Research Collaboration (2009) Identifying factors and processes contributing to successful adjustment to disfiguring conditions. Final report, Centre for Appearance Research, University of the West of England, Bristol
Bellew R (2012) The role of the family. In: Rumsey N, Harcourt D (eds) The Oxford handbook of appearance psychology of Appearance. Oxford University Press, Oxford, UK
Bilboul MJ, Pope AW, Snyder HT (2006) Adolescents with craniofacial anomalies: psychosocial adjustment as a function of self-concept. Cleft Palate Craniofac J 43:392–400PubMed
Billaud Feragen K, Borge AIH (2010) Peer harassment and satisfaction with appearance in children with and without a facial difference. Body Image 7:97–105CrossRef
Billaud Feragen K, Kvalem IL, Rumsey N et al (2010) Adolescents with and without a facial difference: the role of friendships and social acceptance in perceptions of appearance and emotional resilience. Body Image 7:271–279CrossRef
Cassidy J, Shaver PR (2010) Handbook of attachment: theory, research and clinical applications, 2nd edn. The Guildford Press, New York
Collett BR, Speltz ML (2006) Social-emotional development of infants and young children with orofacial clefts. Infants Young Child 19:262–291CrossRef
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