A visible difference can have a profound impact in a society with a massive emphasis on appearance and "looks". A vulnerable group is adolescents with a condition affecting their appearance as a result of injuries (burns, accidents), treatment (cancer), skin conditions or congenital anomalies (birthmarks, craniofacial conditions). Research has identified potential psychological difficulties, which, if not addressed, can lead to anxiety, depression, and eating disorders. In addition to medical treatment options, aiming at diminishing a difference that may be visible to others, young people with appearance concerns also need self-management skills. However, evidence-based interventions are scarce and specialised psychological treatment is difficult to reach. The Centre for Appearance Research (Bristol, UK) has developed an online intervention for adolescents, now translated into Norwegian (www.ungfaceit.no). UNG Face IT provides easy access to specialist advice and support via a home computer, using information, videos, and interactive activities. It provides advice, teaches coping and social skills, strengthening psychological adjustment to a visible difference. A systematic evaluation of the Norwegian version is needed. UNG Face IT could potentially address unmet needs, provide a cost-effective tool to reduce the need for "face-to-face" psychological and surgical/medical services, and contribute to make online health care available for young people with a visible difference.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
130
Ung Face IT is an online intervention tool (programme) that provides easy access to specialist advice and support via a home computer/tablet, using illustrations, information, videos, and interactive activities, and a discussion forum for participants only (supervised by the research team). Through these tools, it provides advice and teaches coping skills based on cognitive behavioural therapy and social interaction skills training.
Centre for Rare Disorders
Oslo, Norway
Body Esteem Scale (BES)
Includes three subscales, only the subscale BE\_Appearance used in this study. Measures general feelings about appearance.
Time frame: 6 months
Life Engagement Scale (LES)
Social experiences and social engagement (10 items)
Time frame: 6 months
Perceived Stigmatisation Questionnaire
Three subscales: Absence of friendly behaviour, confused and staring behaviour, and hostile behaviour by others. These communicate social acceptance, social discomfort, and social rejection respectively.
Time frame: 6 months
Harter's Self-Perception Profile for Adolescents
Two subscales are used: Romantic concerns and general self-esteem
Time frame: 6 months
EQ-5D-5L
Indicator of the impact of UNG Face IT on Health related quality of life and to provide Health economic data
Time frame: 6 months
Resource Use Questionnaire (Parents)
Assessing time out of School, use of Health care Resources and expenses in relation to the child's condition.
Time frame: 6 months
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