Burns, Cleft Lip and Palate, Craniofacial Abnormalities, Other Conditions Leading to a Visible Difference, Skin Condition
Conditions
Brief summary
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.
Interventions
OTHERUng Face IT
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.
Sponsors
Centre for Appearance Research, University of the West of England, UK
Oslo University Hospital
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
12 Years to 17 Years
Healthy volunteers
Yes
Inclusion criteria
* Age 12-17 with an appearance-altering condition, and experiencing appearance-related distress, teasing, or bullying * Access to a home computer/tablet and internet * Reading level \> 12 years of age. Audio recordings for all written text available on the website for those who may struggle with reading * Normal/corrected-to-normal vision
Exclusion criteria
* Clinical depression, psychosis, eating disorder (alternative support necessary) * Post-traumatic stress disorder (PTSD) or within 12 months of traumatic injury (alternative support necessary) * Learning disability that would impede understanding of the programme's content * Currently receiving psychological intervention
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Body Esteem Scale (BES) | 6 months | Includes three subscales, only the subscale BE\_Appearance used in this study. Measures general feelings about appearance. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Life Engagement Scale (LES) | 6 months | Social experiences and social engagement (10 items) |
| Perceived Stigmatisation Questionnaire | 6 months | 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. |
| Harter's Self-Perception Profile for Adolescents | 6 months | Two subscales are used: Romantic concerns and general self-esteem |
| EQ-5D-5L | 6 months | Indicator of the impact of UNG Face IT on Health related quality of life and to provide Health economic data |
| Resource Use Questionnaire (Parents) | 6 months | Assessing time out of School, use of Health care Resources and expenses in relation to the child's condition. |
Countries
Norway
Outcome results
None listed