Online Psychosocial Support for Young People With a Visible Difference: A Randomised Control Study

Not Applicable

• Conditions: Craniofacial Abnormalities; Burns; Skin Condition; Cleft Lip and Palate; Other Conditions Leading to a Visible Difference
• Interventions: Other: Ung Face IT

• Registration Number: NCT03165331
• Lead Sponsor: Oslo University Hospital

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.

Detailed Description

Not available

Study Timeline

• Study Start: 2016-04-01
• Study First Submitted: 2017-05-23
• Study First Submitted QC: 2017-05-23
• Study First Posted: 2017-05-24
• Primary Completion: 2021-06-30
• Status Verified: 2023-03
• Last Update Submitted: 2023-03-30
• Last Update Posted: 2023-03-31
• Study Completion: 2023-09-30

Recruitment & Eligibility

• Status: ENROLLING_BY_INVITATION
• Sex: All
• Target Recruitment: 130

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

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: PARALLEL

Arm && Interventions

Group	Intervention	Description
Control group	Ung Face IT	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).
Intervention group	Ung Face IT	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).

Primary Outcome Measures

Name	Time	Method
Body Esteem Scale (BES)	6 months	Includes three subscales, only the subscale BE_Appearance used in this study. Measures general feelings about appearance.

Secondary Outcome Measures

Name	Time	Method
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.
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.
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
Harter's Self-Perception Profile for Adolescents	6 months	Two subscales are used: Romantic concerns and general self-esteem

Trial Locations

Locations (1)

Centre for Rare Disorders; 🇳🇴 Oslo, Norway