Features - The Teen Project: Interim Report - March 2006

Introduction

The research is being conducted by PhD student, Fiona Fox at the Centre for Appearance Research (based at the University of the West of England, Bristol). This report provides a background, the research summarises how the project has progressed and indicates some of the early findings. It also outlines future directions for the project.

Background

Research has highlighted the potentially severe and disabling psychological impacts associated with Psoriasis (Wahl 1997: Perrott, et al 2000). These include, low self esteem, anxiety, depression and impaired social functioning. These studies tend to overlook young people either by using adult samples or by relying on the reports of caregivers and healthcare professionals to ascertain the experiences of young people (Koo 1996; Perrott, et al 2000; Ferrandiz et al 2002). Furthermore the majority of these studies use quantitative measures to collect data and therefore fail to capture the depth and breadth of experiences, let alone the diversity of individual experiences. The Teen Skin Project aims to address this deficiency by designing studies which directly ask young people to discuss and reflect on their experience of having Psoriasis.

During adolescence, appearance is central to both self concept and peer relations (Finkelson 2001). Consequently managing a visible skin condition, such as Psoriasis, may cause great anxiety and distress. This project is paying particular attention to the appearance related concerns of young people and asking them to reflect on how they manage their appearance and cope with their concerns.

The Teen Skin Project: Aims

•To explore the psychological and social problems associated with having Psoriasis in adolescence.
•To ask young people to identify their appearance related concerns and to explore how these may be managed.
•To recommend practical ways in which young people can be assisted and supported in coping with Psoriasis.
•To evaluate if, or how, these recommendations may be applied to adolescents with other chronic skin conditions.

Progress Report

Data collection for The Teen Skin Project initially used online focus groups with young people. Data was collected through face to face interviews with young people and email interviews with parents. These studies were granted ethical approval by UWE ethics committee. As it involved a clinical sample, the face to face interviews were also approved by Frenchay Regional Ethics committee.

Online Focus Groups

The project has hosted 3 online focus groups with young people aged 11-18 who have Psoriasis. Participants were recruited through adverts on the web pages of support organisations. The online focus groups were held in a specifically designed, secure chat forum. The young people met in this forum to discuss their experiences of living with Psoriasis. With 3 participants in each group, these lively and informative discussions lasted an average of 1 hour. Fiona analysed the data and developed themes, which she then summarised and showed to the participants. The young people from all 3 groups then met online to discuss Fiona's findings. The subsequent sections explore why real time online focus groups are appropriate for young people and indicate some of the early findings from this study.

Online focus groups and young people

While some studies have collected data through non-real time online focus groups, (such as message boards), few published studies have used real time online focus groups. In real time the group moderator and the participants all get online at the same time and meet in a chat forum. Interactions are therefore immediate. That few studies report the use of real time online focus groups with young people seems to be a surprising missed opportunity. This section briefly outlines why using real time online focus groups with young people is both practical and enjoyable.

The internet, as an increasingly popular source of information and communication, is accessible to many young people either at home or school (DfEE 2000). Real time communication is extremely popular and tools such as MSM messenger are widely used by young people. This study tapped into young people's preference for real time online chat, although participation was limited to young people with internet access and relatively confident IT skills.

Hosting focus groups online may be particularly appropriate for groups of young people for whom attending a face to face focus group may be a challenge. Individuals who have appearance related concerns may be unwilling to meet with unfamiliar people (Lazarus & Folkman 1984; Ginsburg & Link 1989; Wahl et al 2002). By hosting focus groups online participants are able to contribute privately, at their convenience and retain a sense of anonymity. In the Teen Skin focus groups, the ease with which the young people communicated and their willingness to disclose personal experiences indicated that this venue was ideal to facilitate discussions. This supports research that suggests the anonymity afforded by the internet is valuable for teenagers, allowing them to explore sensitive topics that they may not feel comfortable discussing with friends or family (Suzuki & Calzo 2004). After one focus group a parent told Fiona: "you have given X an avenue which was never open to her before. She is still in MSN contact with some of the teenagers she has met via your web chat and it has also given us the opportunity to have a more grown-up talk about her Psoriasis. It's so easy to get bogged down in everyday life, that X and I don't always make the time to talk things through properly" (Parent).

In practical terms doing focus groups online facilitated immediate communication between a geographically diverse and potentially hard to reach population. It is possible that this unusual venue for research heightened the interest of the young people and increased their willingness to participate (Tse 1999). Feedback indicated that the young people in this study enjoyed taking part and found it an appropriate and user friendly means of communication.

Early Findings

The data from the online focus groups were analysed and organised into themes. The themes, which encompass the issues raised by the young people, are;

It & Me: Covers how they described Psoriasis and its impact on them.
It & Us: Covers the shared experiences of the young people during the focus group
Us & Them: Deals with how the young people feel about their interactions with other people.

The following section describes the themes and uses direct quotes from participants to illustrate points. It should be noted that the spelling errors in the quotes are a normal part of real time online chat, as speed is rated over spelling!

It: The young people described their Psoriasis as a central part of themselves and their lives. Most notably, they described the paradox of 'it', as being both predictable and unpredictable; It is predictable, as it's likely to be permanent and even when treatment seems to be successful, it never totally leaves the body or mind. This is illustrated by a participant who said; "yeh suppose it's there forever - it's always under the surface if not on top! depressing!:(". The young people suggested that impacts, such as low self esteem and impaired confidence were likely to be long term. It was often described as being unpredictable, as they can't predict which part of the body will be affected next, or to what extent. One participant said; "it shifts uround the whole time - I neva no where its going to turn up next!. "This lack of control was a difficult aspect of managing 'it'.

It and me: The young people described how 'it' impacts on their lives by limiting choices about clothing, relationships and activities, affecting their self confidence and making them feel different from their peers. Many of these impacts were related to the way 'it' alters and affects appearance, which is likely to be particularly difficult during adolescence. As one participant said "Skin is everything for teenagers. Everyone is conscious!" In response they discussed the various strategies they adopt to control and manage their appearance related concerns. Practical strategies included avoiding certain activities, concealing it and trying a range of conventional and complimentary treatments. Psychological strategies included humour, positive thinking, acceptance and seeking social support.

It and us: The online discussions demonstrated how the young people took comfort from interacting with others who had Psoriasis. Feedback, both during and after the focus groups, indicated that this type of communication has the potential to relieve isolation and improve the confidence of those who take part. In 2 of the 3 groups quite a strong group identity began to emerge as a result of sharing common experiences. This sense of 'us' is illustrated by talk such as, "it is something that makes us different" and "but its not r fault".

Us and them: Through their exchanges the young people constructed themselves as a group ('us') and others ('them') as people who do not understand what 'it' is or how it affects their lives. The category 'them' includes healthcare professionals, friends and strangers. While these groups differ in their knowledge and understanding of 'it', the young people often found them unsupportive or threatening in some way. It seemed to help the young people to describe 'them' as either being ignorant, only interested in appearances or unable to empathise because they don't have 'it' themselves. Talk emphasised how 'it' can cause young people to feel visibly different from their peers. They may feel further alienated by their unique experiences and emotional maturity. "u learn how to cope but I know that being more mature alienates me from friends …"

Other Studies

This project is also collecting data through interview studies. Face to face interviews are currently underway with young people aged 11 -18, to gain a greater in depth understanding of the personal experience of managing Psoriasis during adolescence. Some of the parents of the young people have also agreed to share their experience of having a child with Psoriasis through email interviews. This data provides a broad insight into the context within which the young people are growing up as well as illustrating how Psoriasis can affect families and caregivers as well as the individual who has it.

Future plans: Peer Support Group

Building on the success and popularity of online communication between young people, the Teen Skin Project is now focusing on how peer support groups function in an online environment. This study intends to establish, host and evaluate a short term online peer support group. The members will be participants from the online focus groups, who have agreed to participate in this group. The secure online forum will provide the venue for regular discussions led by the young people themselves. Data analysis should increase understanding about the ways in which young people support each other through real time online communication. This maybe comparable to the model developed by Tichon & Shapiro (2003) for non real time online support groups and should provide a truly child centered focus for the project. It is anticipated that evaluation of this group may provide the basis for practical recommendations which may be applied to young people with a range of appearance related concerns.

References

DfEE (2000) Survey of Information and Communications Technology in Schools, England. London: HMSO (available at http://censusatschool.ntu.ac.uk/table2-1.asp)

Ferrandiz C, Pujol, R.M, Garcia-Patos, V, Bordas, X & Smandia, J.A (2002) Psoriasis of early and late onset; A clinical and epidemiologic study from Spain. Journal of the American Academy of Dermatology, 46(6) 867-73

Finkelson, J.K., (2001) Intraindividual stability and change in the adolescent self-concept. Dissertation abstracts International Section B; Vol 62 (6-B).

Ginsburg, J.H, & Link, B.G (1989) Feelings of stigmatization in patients with Psoriasis. Journal of

American Academy in Dermatology, 20, 53-63

Koo, J. (1996). Population based epidemiological study of Psoriasis with emphasis on quality of life assessment. Psychodermatology, 14(3). 485-496.

Lazarus, R.S and Folkman, S (1984) Stress, appraisal and coping. Springer

Perrott, Murray, Lowe & Mathieson (2000) The Psychosocial impact of Psoriasis: Physical severity, quality of life, and stigmatisation... Physiology & Behaviour. Vol 70(5) 567-571.

Suzuki, L.K & Calzo, J.P (2004) The search for peer advice in cyberspace: An examination of online teen bulletin boards about health and sexuality. Journal of applied developmental psychology, 25. 6 pp.685-698.

Tse, C.B (1999) Conducting electronic focus group discussion among Chinese respondents. Journal of the market research society. Vol 41 (4) p.407-415

Tichon JG, Shapiro MC. With a little help from my friends: Children, the Internet and Social

Support. Journal of Technology in Human Services, 2003; 21 (4), pp. 73-92

Wahl, A.K., Gjengedal, E. & Hanestad, B.R (2002) The bodily suffering of living with severe Psoriasis: In-depth interviews with 22 hospitalised patients with Psoriasis. Qualitative Health Research, vol 12(2) p.250 - 261