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

Discussion

Children and young people with a visible difference can experience psychosocial difficulties that research suggests could be ameliorated by psychosocial intervention. However, little is known about which interventions work, for whom, and in what context. This systematic review therefore evaluated the state and scientific quality of research in this area with the additional aim of informing the development of future intervention studies.

Twelve empirical quantitative studies met the inclusion criteria. Evidence to support the effectiveness of residential camps was very limited. Camp attendance only significantly improved self-esteem of participants with burn injuries in one study and evidence indicated that camps have little or no impact on measures evaluating aspects of social experiences over time. It may be that the physical activities and team-building skills did not meet participants' needs in this area, or that studies used measures not comprehensive or specific enough to detect changes. Further work of a higher methodological quality that address limitations identified above is required to adequately determine any potential benefits for young people of residential camp interventions.

Studies evaluating group based or individual SIST provided some weak evidence that they can foster improvements in global self-esteem, anxiety, social experiences, and psychological well-being among participants with a range of conditions. In addition, the one study that evaluated individual CBT/SIST demonstrated some improvements in behavioral problems and social experiences (teasing). These findings are concordant with those from systematic reviews that have examined the effectiveness of psychosocial interventions or support for adults with appearance-altering conditions or injury (Bessell & Moss, 2007; Muftin & Thompson, 2013). Cognitive Behavioral and Behavioral/Social Interaction Skills approaches have also been advocated by practitioners and researchers in the field as appropriate interventions to help individuals manage the psychological impact (poor body image, low self-esteem, a fear of negative evaluations by others, and social anxiety) associated with living with a visible difference (e.g., Bessell & Moss, 2007; Cash, 2012; Hansen & Clarke, 2008; Newell & Clarke, 2000; Rumsey & Harcourt, 2012). Study findings across reviews suggest these approaches may be effective in ameliorating distress for young people with distress associated with a visible difference also echo the evidence base underpinning the treatment of social phobia (Clarke & Wells, 1995) and body image concerns (Farrell, Shafran & Lee, 2006; Jarry & Ip, 2005). Therefore, interventions informed by social interaction skills and cognitive behavioral models warrant further rigorous investigation regarding their effectiveness in fostering psychosocial well-being in children and young people with appearance altering conditions, injury, or treatment effects.

Nevertheless, conclusions drawn from this review must also consider the scientific quality assessment of the risk of bias inherent within the design and methods used within included studies. The internal and external validity of the studies included in this review were judged to be poor, and subject to a high risk of bias. This reflected common limitations in methodological design and reporting. Studies with poor internal validity typically used small sample sizes, lacked a comparison or control group, did not use random allocation or blinding, failed to record intervention fidelity or adherence, and did not collect longitudinal data on effectiveness. External validity was often limited by insufficient attention to the impact of selection biases, participant attrition, and lack of detail regarding the content and delivery of the intervention. Owing to the heterogeneity of the type and delivery of interventions and outcomes measured, combined with a paucity of robust evidence to support study findings, the current state of empirical research highlights the need for more rigorous research in this area to reliably inform evidence-based practice.

This review also highlights discord within the existing literature regarding how to conceptualize and measure psychological well-being in this population. However, the majority of studies did include a global measure of self-esteem as a primary or secondary outcome measure: Either the Rosenberg Self-esteem Scale or the Self Perception Profile for Children (Harter, 1985a). Both scales have good psychometric properties and are widely used to quantify self-esteem using self-report measures to provide a single score representing an overall positive or negative evaluation of oneself (Blascovich & Tomaka, 1991; Gray-Little, Williams, & Hancock, 1997; Harter, 1985a; Muris, Meesters, & Fijen, 2003). Nevertheless many social scientists in the field of appearance and body image psychology (Cash, 2012; Clarke et al., 2013) view self-esteem as multidimensional, comprising various self-aspects or domains that are highly differentiated (Harter, 1988). For young people, these include intellectual, academic, social, and school status, and attributes such as physical or sporting ability, physical appearance, and popularity (Marsh, Parada, & Ayotte, 2004). Evidence suggests that differences in the centrality and value individuals place on these aspects or domains can determine the psychosocial impact of threats to domain specific self-esteem (e.g., physical appearance; Moss & Carr, 2004).

It is also posited that cognitive and behavioral components, as well as affective components, (Blascovich & Tomaka, 1991) contribute to the evaluative component of a multifaceted self-concept (Moss & Carr, 2004). Therefore, when seeking to determine the psychosocial well-being of children and young people with visible differences, measures of global self-esteem may lack sensitivity in detecting the impact of appearance-related distress on psychosocial well-being (Baumeister, Campbell, Krueger, & Vohs, 2003). As posited by Gaskell (2007), measuring aspects of self-esteem most pertinent to young people with appearance-altering conditions, injury, or treatment effects, such as satisfaction with appearance and social confidence, may be more appropriate to gauge effectiveness of interventions designed to improve psychosocial well-being for this population. Indeed, those studies that evaluated the impact of interventions on both dis/satisfaction with appearance and self-esteem showed improvements in dis/satisfaction in the absence of improvements in self-esteem scores.

This review has potential biases. The high risk of bias in included studies has been discussed and renders the findings of included studies inconclusive. Nevertheless, minimizing bias in these applied studies may have been very hard to achieve regarding issues such as blinding and randomization. At review level, gray literature was not searched, it is possible that studies evaluating interventions were undertaken but not published in peer-reviewed journals or were presented in unpublished theses. However, there appear to be few barriers to publishing studies with small sample sizes, non-significant findings or those of limited methodological quality, as illustrated in the studies that were sourced. The review included a broad study population, which included children and young people with a diverse range of visible differences, without measurement of the aetiology, progression, severity, and visibility of the condition. It is recognized that there may be condition-specific challenges faced by these patients, and this may have influenced uptake, completion, and effectiveness of the interventions evaluated. The review was also limited to evaluating quantitative findings. We are aware that qualitative approaches can provide evidence of the benefits of interventions that are not detected by questionnaires as expressed by patients and their caregivers from their own perspective (e.g., Gaskell, 2007; Maslow & Lobato, 2010). In addition, the use of questionnaires with children raises particular issues regarding engagement, reading comprehension, and understanding of psychological concepts, particularly where scales are unvalidated, or validated with an older target group. Future research might consider even greater input from patients in the research design process to ensure measures selected are meeting their needs and reflecting their experiences, possibly using mixed, observational, or novel methods when evaluating outcomes.

This systematic review serves to highlight gaps in the existing literature. Current research in the field is lacking in rigor, with a dearth of randomized controlled trials to ascertain whether interventions provide gains over and above routine care, or no treatment. This presents a challenge for researchers and clinicians in building an evidence base on which to develop effective interventions. Researchers should also consider designing and testing age-appropriate measures, which capture experiences of living with an appearance-altering condition, injury, or treatment effects, for example, social anxiety, fear of negative evaluation, and perceived satisfaction with appearance, to adequately gauge the impact of interventions. In addition, the cost effectiveness of interventions was not considered in existing studies. Future research should seek to ascertain the potential economic impact of intervention adoption.

In conclusion, this systematic review provides an evaluation of the current state, success and quality of intervention research in this area, and has identified the need for future work to reliably ascertain what works for whom and in what context. Ultimately, collaboration between academics and practitioners is required to ensure future research with clear theoretical underpinning, rigor, and clinical relevance to build evidence on which to base effective support for children and young people with appearance-altering injury, conditions, or treatment effects.

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