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

Method

Protocol and Registration

The PRISMA checklist for reporting systematic reviews (Moher, Liberati, Tetzlaff, Altman, & The PRISMA Group, 2009) guided this review. No protocol exists but further information can be provided by contacting the authors.

Eligibility Criteria

Articles met the following eligibility criteria:

  1. Studies published in English in a peer reviewed journal from 1980 to 2013.

  2. Studies that evaluate the effectiveness of the intervention on pediatric populations (0–18 years) with an appearance-altering condition, injury, or treatment side effect, including congenital (present from birth) or acquired conditions. Studies with participants with body dysmorphic disorder or with appearance changes related to an eating disorder or obesity were excluded owing to the distinct psychiatric issues associated with these conditions.

  3. Studies that evaluate a psychosocial intervention to improve psychosocial well-being, that is, those designed to reduce psychosocial distress and/or improve coping strategies or adjustment (the reduction of distress, depression, and anxiety and increased self-esteem or social confidence). Interventions could be delivered without concurrent psychosocial, educational, or medical intervention or within a package of care, delivered in any setting/environment and over any time frame. Comparison of the intervention with a passive or active control group, with alternative interventions or pre- and postintervention.

  4. Studies that include a quantitative measure of self-esteem, social experiences, and/or psychosocial well-being or behavioral outcomes pre- and postintervention.

Information Sources

Systematic literature searches using the following databases were conducted in February 2013 and updated in December 2013: Embase, Medline, PsychINFO, SCI, SSCI, AMED, ASSIA, Campbell Collaboration, Cochrane Library, Evidence-based medicine review, and the National Research Register. Searches were restricted to English language format in a peer-reviewed journal from 1980 to 2013. Citation and ancestry searches were conducted and key journals hand searched for additional studies. Subject Headings, MeSH terms, and keywords were used to search publications.

Search Terms

Population terms included a range of visible differences (disfig* or deform* or "altered appearance" or defect* or malform* or acne or alopecia or amput* or birthmark or burn* or craniofacial or cranio-facial or cleft or dwarfism or eczema or epidermolysis or naevus or "facial palsy" or psoriasis or ptosis or rhinoplasty or scoliosis or squint or strabismus or thyroid or vitiligo or "wall-eyes" or "hair loss" or scar* or baldness or aesthetic* or esthetic* or derm* or skin* or "limb loss" or ichthyosis or neurofibromatosis or NF* or "ectodermal dysplasia" or "epidermolysis bullosa" or "visible difference*" or "visibly different") and the target age range of the sample (child* or adoles* or juvenile or pre-teen or preteen or teen* or infant* or youth or paediatric or pediatric or tya or "young people" or "young person"). Intervention search terms related to intervention delivery (Psych* or educat* or program* or service or therap* or intervent* or trial or evaluation or counselling or CBT or cognitive behavio?ral or camp* or "skills training" or "social skills" or group or "social support" or "peer support" or outreach or "nursing care" or advice or teaching) and outcome (adjustment or adaptation or depression or anxiety or self-esteem or "self esteem" or coping or distress or "self-concept" or "self concept" or "body image" or appearance* or "self image" or "quality of life" or "health-related quality of life" or qol or hrqol or wellbeing or well-being or "well being").

Study Selection

Two reviewers independently reviewed abstracts in an unblinded standardized manner. The decision to include was reached by consensus. Figure 1 summarizes the process.

Figure 1.

PRISMA 2009 flow diagram.

Data Collection Process and Data Items

Two reviewers independently extracted data from each full paper using a data extraction sheet designed for the review. Percentage interrater agreement was 80%. Discrepancies were resolved by discussion and consensus. Disputes were referred for comment and arbitration by a third reviewer. Where information was not available, attempts were made to contact authors for clarification. No further outcome data were obtained, but six authors offered clarification regarding methods of intervention or evaluation. Data extracted is presented in Table I.

Risk of Bias

Studies were evaluated using the Cochrane risk of bias tool (Higgins et al., 2011) at study level by two reviewers independently in an unblinded manner. This is summarized in Table II.

Summary Measures

The summary measures scrutinized were differences between reported mean scores for the intervention and control/comparison groups, pre- and postintervention. p-values, and Effect sizes for those studies, which included a control or comparison group, were reported where cited by the authors, or where they could be calculated from the data cited within the article.

Synthesis of Results

Included studies varied in design, intervention approach, and primary and secondary outcome measures. Therefore, meta-analysis was not appropriate (Liberati et al., 2009) and findings were synthesized narratively. Risk of bias across studies was not formally assessed.

Comments

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