Visible difference amongst children and adolescents: Issues and interventions

Abstract

Whether present at birth or acquired later in life, a visible difference (disfigurement) can have considerable psychological ramifications for children and adolescents. Whilst many young people adapt to the demands placed upon them and appear relatively unaffected, others report difficulties including adverse effects on body image, quality of life, self-esteem and difficulty with social encounters. This review examines the issues experienced by those affected, summarizes the factors identified as exacerbating or ameliorating any difficulties, then considers the particular pressures associated with developmental stages and the issues for family members. The current provision of care, the potential benefit of psychosocial interventions and the challenges faced by researchers in this area are explored.

The experiences of young people with Epidermolysis Bullosa Simplex: A qualitative study

“…Rumsey and Harcourt (2007) identified the important part played by social comparison in the development of self-image in children with visible differences and the negative impact of teasing on the development of a confident and secure sense of self. While both adults and children with skin conditions can experience difficulties in social relationships and negative treatment by others (e.g.…”

“…It is considered to be a relatively mild form of EB and, possibly for this reason, it has received less research attention than other types. Given that there is no clear relationship between the severity of a disfiguring condition and its psychological impact (Rumsey and Harcourt, 2007) it is problematic to assume that those with more severe types of EB will necessarily experience more psychological distress than those with EBS.…”

“…Even relatively transient alterations to the skin in these Experiences of Epidermolysis Bullosa 5 5 areas, for example because of injury or acne, can result in psychological distress (Rumsey and Harcourt, 2007;Titman, 2005). Children and young people who are visibly different may develop a negative self image and experience psychological difficulties.…”

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child

“…When investigating associations between psychological adjustment and appearance satisfaction, research has quite consistently shown that subjective patient centered measures should be attended to in preference to more "objective" evaluations by professionals [14,15,16]. Parent perspectives are also valuable, particularly in the child's early years, and are important to include when evaluating treatment outcomes of randomised trials such as the Scandcleft trials, if cleft teams are to fully understand the complexity of satisfactory treatment outcomes [17].…”

Quality of Life and Psychosocial Needs of Children Suffering from Chronic Skin Diseases

“…Davies, Noll, DeStefano, Bukowski and Kulkarni [17] emphasize that adult perceptions can be significantly different from child perceptions. For example, unclear link between the severity of skin disease symptoms and the quality of life of children can be explained by physicians assessing the severity of symptoms, while in some cases parents assess the quality of their children's lives [18,19]. When children are not directly asked about their experience, which is not rare in medical studies, the understanding of various concepts is incomplete [20].…”