Systematic Review

Psychosocial Interventions for Children and Young People With Visible Differences Resulting From Appearance Altering Conditions, Injury, or Treatment Effects

Elizabeth Jenkinson, DHEALTHPSY, CPSYCHOL; Heidi Williamson, DHEALTHPSY, CPSYCHOL; James Byron-Daniel, PHD, CPSYCHOL; Timothy P. Moss, PHD, CPSYCHOL

Disclosures

J Pediatr Psychol. 2015;40(10):1017-1033. 

In This Article

Abstract and Introduction

Abstract

Objective Evaluate critically the evidence of the effectiveness of psychosocial interventions for children/young people (<18 years old) with visible differences in improving self-esteem, social experiences, psychological well-being, and behavioral outcomes.

Methods Studies were systematically identified using electronic databases, appraised according to eligibility criteria and evaluated for risk of bias. Findings were reported using the PRISMA checklist.

Results Studies were identified that evaluated residential social camps, exercise with counseling, social skills training (SIST), behavioral therapy (BT), and cognitive behavioral therapy (CBT). Risk of bias within studies was high. Camp studies and exercise with counseling showed little or no effect postintervention on self-esteem, social experiences, and psychological well-being. The five studies evaluating SIST, CBT, and BT provided limited support for their effectiveness.

Conclusions Evidence base is inconclusive. Further rigorous research using appropriate outcome measures to evaluate the effectiveness of interventions for young people with visible differences is required.

Introduction

Approximately 1 in 111 young people in the UK have a significant "visible difference" ("disfigurement") to their face and 1 in 44 have a "visible difference" affecting other body parts (Changing Faces, 2010). These statistics include those with any condition, injury, or treatment side effect that results in an appearance generally considered by society to be "different from the norm" (Rumsey & Harcourt, 2012, p. 1). For example, appearance changes resulting from congenital conditions (e.g., craniofacial conditions and birthmarks); skin conditions (e.g., psoriasis and vitiligo); following treatments for diseases such as cancer and meningitis (e.g., scarring, hair loss, and amputation), or as a result of trauma (e.g., burn/acid scarring).

The psychosocial impact of looking "different" in a society where beauty ideals are all-pervasive, an attractive appearance is highly valued and the dominant rhetoric prescribes that "beautiful is good," is well documented (Smolak, 2012). Even children <5 years have been found to choose friends based on their looks and can more readily recall stories that are consistent with the "beauty equals success" stereotype (Ramsey & Langlois, 2002). Attractive children have also been found to be more popular (Boyatzis, Baloff, & Durieux, 1998) and to be perceived by others, including teachers, as more intelligent, friendly, and successful than those with visible differences (Richman & Harper, 1978). This focus on appearance amplifies during adolescence. Physical, social, and sexual changes, combined with a heightened sense of social comparison, result in young people becoming acutely aware of their body and relative (sexual) attractiveness, and they are confronted with critical appearance-related evaluation by peers (Ricciardelli & Mellor, 2012).

Research consistently shows that irrespective of the cause or nature of a visible difference—be it a skin condition, burn scar, a cleft lip, amputation, or birthmark—those with an "unusual" appearance can experience similar extensive and enduring social and psychological difficulties (Rumsey & Harcourt, 2004). These include receiving unwanted attention from peers and strangers, being teased and bullied or, conversely, experiencing avoidant behavior from strangers and being excluded or ignored by peers (Gilbert & Thompson, 2002; Langley, Kreuger, & Griffiths, 2005; Magin, Adams, Heading, Pond, & Smith, 2008). Some manage social discrimination well, develop effective coping strategies, and are minimally affected by their "difference"; they may even thrive as a result (Williamson, Harcourt, Halliwell, Frith, & Wallace, 2010). However, across conditions, evidence suggests that approximately one-third develop psychological difficulties that impact on quality of life and healthy social and emotional development (Hearst, Middleton, Owen, & Zeffert, 2008; Rumsey, Clarke, & White, 2003; Weinstein & Chamlin, 2005) including negative self-perceptions, poor body image, low self-esteem, and a fear of negative evaluation by peers/strangers on the basis of appearance (Wisely & Gaskell, 2012), subsequent social avoidant behaviors and withdrawal (Kent & Keohane, 2001; Thompson & Kent, 2001), poor school performance and lower vocational aspirations (Lovegrove & Rumsey, 2005; Park, DiRaddo, & Calogero, 2009).

When seeking evidence for the factors and processes responsible for variation in adjustment, research shows that location, size, and cause of a visible difference do not predict distress (Juling et al., 2007; Moss, 2005). Instead, adjustment is determined by intrapersonal and interpersonal psychological factors implicated in the development of adaptive and maladaptive social cognitions and behaviors (Appearance Research Collaboration, 2008), suggesting that theoretically, adjustment might be improved through psychosocial intervention. For example, cognitive behavioral therapy (CBT) approaches draw on models of body image adjustment and disturbance (Clarke, Thompson, Jenkinson, Rumsey, & Newell, 2013) and models of social anxiety and social phobia (Clark & Wells, 1995). Interventions based on CBT focus on the development of adaptive (rather than maladaptive) appearance-related schemas (Thompson & Kent, 2001) and behavioral exposure strategies that reduce social avoidance (Hansen & Butler, 2012; Newell & Marks, 2000). Similarly, Social Interactive Skills Training (SIST) approaches focus on helping patients to cope with the challenges of the social world, by enhancing communication skills and improving the quality of social relationships (Robinson, 1997).

A range of intervention programs have attempted to apply these models and theories to address appearance-related distress. Some adopt a generic approach, targeting children and young people with a range of visible differences, for example, the UK-based charity "Changing Faces" (Clarke, 1999) and the NHS "Outlook" disfigurement support unit in the UK (Maddern, Cadogan, & Emerson, 2006). Others target young people based on the aetiology of their visible difference, such as burns residential social camp programs (Maslow & Lobato, 2010).

Existing interventions share similar tenets; to increase positive thinking about appearance, raise self-esteem and confidence, and to foster social competence to combat negative reactions of others to their appearance. However, they have largely been developed from research conducted with adult populations. Similarly, systematic reviews, conducted by Bessell and Moss (2007) and Muftin and Thompson (2013), have only examined the effectiveness of psychosocial interventions for adults. No systematic review of the literature scrutinizing interventions targeted at children and young people with appearance-altering conditions, injuries, or treatment side effects currently exists; which interventions are effective, and for whom and in what context, remains unclear. The objective of this review is, therefore, to evaluate critically the evidence of the effectiveness of psychosocial interventions for children/young people (<18 years old) with a range of conditions, injuries, and treatments that impact appearance in improving self esteem, social experiences, and psychological well being, in comparison with a passive or active control group, alternative interventions, or pre- and postintervention.

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