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| Name | Class |
|---|---|
| Centre for Appearance Research, University of the West of England, UK | UNKNOWN |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention group | Other | The intervention group will go through the intervention programme (Ung Face IT) after T1 and randomisation. Programme takes 7 weeks to complete + Treatment as usual (local health care services). Questionnaires after the 7 weeks (T2) and after three months (T3) and 6 months (T4). |
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| Control group | Other | Treatment as usual for three months after T1 and randomisation, with local health care support if needed. Questionnaires at T2 and T3 before participants are given access to the intervention (Ung Face IT) after three months. Questionnaire at T4 (post-intervention). |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Ung Face IT | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| Body Esteem Scale (BES) | Includes three subscales, only the subscale BE_Appearance used in this study. Measures general feelings about appearance. | 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Life Engagement Scale (LES) | Social experiences and social engagement (10 items) | 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. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Olve Moldestad, PhD | Centre Director | Study Director |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Centre for Rare Disorders | Oslo | Norway |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 36652281 | Derived | Zelihic D, Feragen KJB, Pripp AH, Nordgreen T, Williamson H, Kling J. Predictors of Adolescents' Response to a Web-Based Intervention to Improve Psychosocial Adjustment to Having an Appearance-Affecting Condition (Young Person's Face IT): Prospective Study. JMIR Form Res. 2023 Jan 18;7:e35669. doi: 10.2196/35669. | |
| 36601286 | Derived |
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Data from the UK and Nethelands will be shared anonymously with the Norwegian Research team. No Norwegian data will be shared with international collaborators.
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| ID | Term |
|---|---|
| D012871 | Skin Diseases |
| D002971 | Cleft Lip |
| D002056 | Burns |
| D019465 | Craniofacial Abnormalities |
| ID | Term |
|---|---|
| D017437 | Skin and Connective Tissue Diseases |
| D008047 | Lip Diseases |
| D009059 | Mouth Diseases |
| D009057 | Stomatognathic Diseases |
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| 6 months |
| Harter's Self-Perception Profile for Adolescents | Two subscales are used: Romantic concerns and general self-esteem | 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 | 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. | 6 months |
| Millgard M, Feragen KB, Ullmann Miller J, Arfa S, Williamson H, Kling J. Adolescents and parents' perception of Young Person's Face IT: An online intervention for adolescents struggling with conditions affecting their appearance. Digit Health. 2022 Dec 25;8:20552076221147110. doi: 10.1177/20552076221147110. eCollection 2022 Jan-Dec. |
| D009056 | Mouth Abnormalities |
| D018640 | Stomatognathic System Abnormalities |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D014947 | Wounds and Injuries |
| D009139 | Musculoskeletal Abnormalities |
| D009140 | Musculoskeletal Diseases |