Online psychosocial support for young people distressed by appearance-altering conditions: A randomised control trial (RCT)

Looking different in a society that values appearance can be challenging, especially during adolescence. Many different conditions can affect appearance, such as for example a craniofacial condition such as a syndrome or a cleft lip and palate, skin conditions, or acquired conditions such as a burn injury. A visible difference may lead to social reactions, such as staring, questions or comments. Young people who experience other peoples’ reactions as challenging, may limit social interactions or develop social anxiety and depressive symptoms. Support before serious problems arise are therefore important. However, there is little available support for this group. A specialised and evidence-based e-intervention is therefore a useful supplement within the health care system for those in need of support. Centre for Appearance Research (University of the West of England, UK) has developed Young Person Face It, an online psychosocial support programme for adolescents 12-17 years (Norwegian version: Ung Face It, www.ungfaceit.no). Ung Face It includes information, advice, videos, and interactive activities to teach coping strategies, think and feel more positively, and overcome social anxiety. Content is based on social skills training (SST) and cognitive behavioural therapy techniques (CBT). The aim of the study was to evaluate Ung Face It’s experienced usefulness and effectiveness for young people with a visible difference in Norway, and whether it can strengthen social skills and self-confidence. A total of 104 adolescents were recruited and randomly allocated to an intervention group or a waiting list control group. Quantitative data were collected before and after access to Ung Face It, measuring body esteem and social ansxiety. In addition, qualitative data were collected, consisting of 53 interviews with young people and their parents. Through a collaboration with a Dutch team, effectiveness could also be tested on a larger sample, strengthening statistical power. Results indicate that Ung Face It reduces social anxiety, is cost-effective, and safe to use. Young people who reported higher levels of distress before access to Ung Face It, and young people who spent recommended time on the programme had the best effect. The programme is also experienced as relevant and useful. Feedback from users and participants were used to revise, edit, and modernise the content and design of the Norwegian version, in collaboration with the design agency Tank. The new Norwegian version appears with a new and appealing design. Ung Face It is now available on the national health platform Helsenorge (Verktøy). Health care providers can recommend use of the programme to their patients. Ung Face It fills a gap in current health care provision by offering an accessible and specialised appearance-specific intervention for a vulnerable subgroup who otherwise struggled to find help.

Forskning: Prosjektet har bidratt til viktig kunnskap om en eksisterende eIntervensjon for en sårbar gruppe ungdom. Det britiske forskningsteamet ved Centre for Appearance Research, som utviklet den opprinnelige versjonen av Ung Face IT, fikk aldri finansiering for en større RCT. Forskningen støttet av NFR vil dermed være et viktig bidrag inn i forskningsfeltets forståelse av nytteverdien av eIntervensjoner generelt og effekten av Ung Face IT spesifikt. Kompetanseutvikling: Som vist gjennom resultatoppnåelsen (Sluttrapport) er det gjennom prosjektperioden holdt mange foredrag og skrevet flere populærvitenskapelige sammendrag og tekster om Ung Face IT og om det å være ungdom med et annerledes utseende. Vi håper og tror at dette har vært et viktig bidrag i kompetanseutvikling av fagpersoner med oppfølgingsansvar for ungdom i denne målgruppen. Vi tror også at programmets tilgjengelighet gjennom vår nasjonale plattform Helsenorge kan bidra til kompetanseutvikling, for helsepersonell som setter seg inn i programmets innhold og anbefaler bruk av dette for aktuelle pasienter. Prosjektteamet vil også fortsette å holde foredrag om tema. Samfunnet for øvrig: Prosjektet var et avgrenset forskningsprosjekt og hadde ikke som mål å ta tak i holdninger rundt et annerledes utseende i samfunnet for øvrig. Vi håper imidlertid at fokus rundt prosjektet og foredrag til fagpersoner utenfor helsesektoren kan bidra til en bedre forståelse for utfordringer ungdommer med et annerledes utseende kan erfare i hverdagen. NRK lanserer en sak 01/11 om Ung Face IT som vi håper følges opp også av andre media/sosiale media.

Looking different in a society that values appearance can be challenging during adolescence. Some adolescents have conditions or injuries (burns, craniofacial or skin conditions) that affect their appearance. Those who experience themselves as “visibly different” may be at risk of developing social anxiety or depression. There is very little available support for this group and specialised psychological services are limited in Norway. There is a need for evidence-based interventions that could provide support for this group. Centre for Appearance Research (UK) has developed an online support programme, now translated to Norwegian (www.ungfaceit.no). The study will evaluate the programme’s efficacy and usefulness for young people in Norway, and whether it can strengthen social skills and self-confidence. Ung Face IT includes seven weekly sessions followed by a booster session. It uses information, advice, videos, and interactive activities to teach coping strategies, think and feel more positively, and overcome social anxiety. A total of 160 young people will be recruited. Participants will be randomly allocated to Ung Face IT (plus usual care provided within primary care), or assigned to the control group (usual care for 6 months before testing out Ung Face IT). Interviews of young people and parents will explore the participants’ experiences of Ung Face IT (qualitative data). To establish whether Ung Face IT helps, participants will complete online questionnaires (worries with appearance and social confidence) at the beginning of the study, and after 3 and 6 months. Outcomes will be compared across the intervention and the control group (quantitative data). The study will provide insight into how Ung Face IT should be implemented in order to reach those in need of support. Ung Face IT fill a gap in current health care provision by offering an accessible and specialised appearance-specific intervention for a vulnerable subgroup who otherwise struggle to find help.