Non-fatal self-harm among young people - expert network

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1 Daphne project: Non-fatal self-harm among young people - expert network Project details Project name CASE Study on non-fatal deliberate self-harm among children and young people Non-fatal self-harm among young people. Establish expert network to investigate and report. Organisation details National Children s Bureau Project Coordinator Nicola Madge 8 Wakley Street, London EC1V 7QE UNITED KINGDOM Tel +44 (171) Fax +44 (171) Web-site Summary report Introduction/aim Children and teenagers are major risk groups for self-harm, and the purpose of the project was to provide support to an international network of experts to inform the planning of a subsequent European multi-centre study in this field. The following statement was included in the original application for funding in relation to the expected outcomes of the project: It is anticipated that an appropriate methodology will have been developed for examining the extent and circumstances of non-fatal deliberate self-harm among young people under 20 years of age, and that at least three study centres willing to cooperate will have been identified. Sources of funding for such subsequent work will also have been explored. All these targets have been met. Activities/method The project built on the earlier work of Nicola Madge and colleagues on child and adolescent suicidal behaviour which had indicated an important need to investigate patterns of deliberate self-harm among young people. The project therefore began by convening a meeting in Denmark of Dr Madge, Assistant Professor Unni Bille-Brahe from Odense, Denmark, and Dr Erik de Wilde from Leiden, the Netherlands to form a small steering group. This led to a second meeting in Oxford, England at which Professor Keith Hawton joined the steering group. A much larger meeting of potential collaborators took place in Leiden. Through these meetings it was decided that the focus of the CASE Study should include two main types of research activity: monitoring medically-treated self-harm episodes among young people aged under 20 years (supplemented by information on young people likely to be involved with other agencies in the selected geographical areas); conducting a school-based community study of self-harm with 15 and 16 year-old pupils using a similar anonymous self-report questionnaire in all participating countries.

2 Monitoring medically-treated self-harm episodes among under 20 yearolds The World Health Organisation Multicentre Study on Parasuicide (Schmidtke et al, 1996) has for some years been monitoring episodes of medically-treated self-harm through hospital accident and emergency departments. Few centres, however, have included young people under 15 years, in part because they are likely to receive a different (eg. paediatric rather than adult) service. One of the main aims of the proposed collaborative study is to extend monitoring to these children and younger teenagers. The WHO study Steering Committee has agreed that, where feasible, this may be carried out alongside the Multicentre Study on Parasuicide. At the most recent meeting of collaborators it was decided that, ideally, researchers will carry out monitoring in the following way: the catchment area in an individual country should have a population of around 250,000; monitoring shall, in the first instance, be carried out for a period of three years; core data to be collected (often retrospectively) in all centres will be restricted to the young person s sex, age and method of self-harm; persons and episodes of self-harm shall all have unique numbers to allow (with the young person s permission) an assessment of repetition to be made; all young persons under 20 years will be monitored even though this might produce an overlap with data from the WHO Multicentre Study on Parasuicide; ethical committee support will be necessary; if possible, monitoring will start in January Supplementary information on patterns of referral and available services for young people who harm themselves within each research location will also be collected to complement that from hospitals. More ambitious initiatives, such as a networking proposal, will also be encouraged. Community-based pupil questionnaire survey The second major aspect of the collaborative study is the community-based pupil questionnaire survey which involves administering an anonymous questionnaire on selfharm and related matters to 15 and 16 year-olds at school. The questionnaire to be used will be developed in English and translated into other languages (and translated back into English as a check on accuracy) as appropriate. The questionnaire will comprise core questions to be asked in all countries (eg. questions on selfharm, background and depression), those that are recommended but optional (eg. a range of validated scales of self-esteem, coping behaviour, life events etc.), and those reflecting specific national interests. The questions on self-harm are more extensive and far-reaching than have been included in any comparable surveys, and both risk and protective factors will be examined. It is essential that this questionnaire is as comparable as possible for the different participating countries as there is clear evidence that the construction of the instrument, including the wording of questions on self-harm, can have a significant impact on the data obtained (de Wilde and Kienhorst, 1994). Individual investigators are responsible for organising the administrative details of the survey in the participating countries in line with the agreed common criteria. Collaboration in the CASE Study The original aim of the project was to identify at least three cooperating study areas, and some investigation of possible sources of funding for a subsequent multi-centre study. In the event, representatives from about a dozen countries attended project meetings, expressed real interest in taking part in the study, outlined the feasibility of carrying out the work in their own countries and indicated possible or likely sources of funding. These collaborators include:

3 Dr Ella Arensman, Department of Clinical and Health Psychology, Leiden University, Netherlands Assistant Professor Unni Bille-Brahe, Centre for Suicidological Research, Odense, Denmark Dr Paul Corcoran, National Suicide Research Foundation, Cork, Ireland Professor Diego De Leo, Griffith University, Brisbane, Australia Dr Erik Jan de Wilde, Department of Clinical and Health Psychology, Leiden University, Netherlands Dr Sandor Fekete, Department of Psychiatry, University of Pécs, Hungary Professor Keith Hawton, Oxford University Dept of Psychiatry, Warneford Hospital, UK Agnes Hultén, National Centre for suicide Research and Prevention, Stockholm, Sweden Dr Nicola Madge, National Children s Bureau, London, UK Professor Armin Schmidtke, Department of Clinical Psychology, University of Würzburg, Germany Gaia Menejhel and Dr Paolo Scocco, Department of Neurology and Psychiatry, University of Padua, Italy Dr Stephan Overmeyer, Uniklinik Jena, University of Jena, Germany Professor Kees van Heeringen, Unit for Suicide Research, University Hospital, Gent, Belgium Mette Ystgaard, Suicide Research Unit, University of Oslo, Norway In addition, interest in the project has been expressed by the Geneva Initiative, an organisation based in the Netherlands concerned with mental health issues in central and eastern European countries. Funding has recently been raised by this group for research purposes, and preliminary indications are that this will be used to mount the CASE Study school-based questionnaire survey in participating countries including Lithuania, Poland and the Ukraine. Conclusions/recommendations Cooperation with other organisations and bodies was always an intention of the project, and this occurred both with governmental and non-governmental groups in Britain and elsewhere. In addition, however, it became apparent early on that there are many initiatives relating to young people and self-harm that remain relatively isolated and unknown to others working in the field, and that a valuable exercise would be to facilitate links between these. A decision was therefore made to assemble an international resource of such activities on the Internet. The Young People and Self-Harm Information Resource, a freely-available information resource - of research and information, intervention and support, policy and training - was accordingly launched on the Internet in July 1998 at the National Children s Bureau web-site at The purpose of this Information Resource is to put everyone interested in touch with each other and what is going on, and contributions can be made via either an online or a paper questionnaire. Work on this database will continue, with the support of both the project coordinator and volunteers. References De Wilde EJ and Kienhorst CWM (1994); Suicide attempts in adolescence: self-report and other report ; in Kerkhof AJFM et al (eds); Attempted suicide in Europe; DSWO Madge N (in press); Youth suicide in an international context ; European Child & Adolescent Psychiatry Madge N and Harvey JG (1999); Suicide among the young - the size of the problem ; Journal of Adolescence, 22; Madge N and Vernon J (1997); Agreement no SOC F03 (95CVVF ) Child and adolescent suicide and parasuicide in Europe Schmidtke A, Bille-Brahe U, De Leo D, Kerkhof A, Bjerke T, Crepet P, Haring, C, Hawton K, Lönnqvist J, Michel K, Pommereau X, Querejeta I, Philippe A, Salander- Renberg E, Temesváry B, Wasserman D, Fricke, S, Weinacker, B and Sampaio-Faria JG

4 (1996) Attempted suicide in Europe: rates, trends and sociodemographic characteristics of suicide attempters, Results of the WHO Multicentre Study on Parasuicide, Acta Psychiatrica Scandinavica, vol 93, pp Annex Children Young people Prevention of violence Network with other NGOs Network/Public authorities Research/Studies Non fatal self-harm WEB SITES OF OUR MEMBERS: Source: BELGIUM Autisme Vlaanderen APEPA (en français) DENMARK Landsforeningen Autisme FINLAND Finnish association for autism FRANCE Autisme France Sesame Autisme A.F.P.A.A. UNAPEI Autisme Loire GREAT-BRITAIN The Scottish Society for Autism The National Autistic Society (England) Communities for autistic people ITALY Autismo Italia o.n.l.u.s. ANGSA Lombardia LUXEMBOURG Autisme Luxembourg NORWAY Autismeforeningen I Norge THE NETHERLANDS NVA SWITZERLAND L Association Autisme Suisse Romande OTHER SITES RELATED TO AUTISM : World Autism Organisation Autism resources Autism Society of America The #Autism Channel AIDERA-Yvelines Research and bibliographical listings in autism - (Ireland) Autismo e psicosi infantili - (Italian) Exhibition "Creation from Silence" Autisme Alsace Proceedings of our Barcelona Congress Avoiding Unfortunate Situations ASPEN of America On Asperger syndrome Institute for the Study of the Neurological Typical (Parody) Yahoo! Category Autism OTHER SITES OF INTEREST : WHO - World Health Organisation MEDLINE, Free Access via PubMed National Organisation for Rare Disorders EUROPA : European Union Site European Disability Forum Social Platform European Commission NORTHERN IRELAND Parents and Professionals and Autism SPAIN Asociacion Espanola de Padres de Ninos Autistas Confederacion Autismo Espana APAFACC and CONGOST SWEDEN Riskforeningen Autism

5 New website for young people who self harm Source: Friday, 30 July 2004 The National Children s Bureau (NCB) has re-launched their Young People and Self Harm website for young people who self-harm, their friends and families and professionals working with them. The site acts as a key information resource, providing suggestions on how young self-harmers can help themselves and highlighting local services that can provide support. A what s new section details news, policy initiatives, events and publications. The findings of the Child & Adolescent Self-harm in Europe (CASE) Study, an ongoing, seven-country investigation coordinated by NCB s research department, suggest that there is a hidden population of young self-harmers who do not go to hospital following their injury and do not tell anyone about what they have done. Many young people who self-harm do not confide in family or friends and they may find it easier to turn to an anonymous website for information and support, said Dr. Nicola Madge, assistant research director at NCB. We hope that the website will become a valuable resource for them and provide a forum for professionals and other groups wanting to find and share information. We welcome input to the site and encourage people to send us information on relevant events, services and other news. The Camelot Foundation and Mental Health Foundation have recently recognised the growing problem of self-harm by launching a National Inquiry on Young People and Self Harm. Dr. Madge is a panel member on the two- year inquiry. Notes for Editors: 1) The National Children s Bureau (NCB) is the nationally recognised authority on policy, research and best practice relating to children and young people in England and Northern Ireland. NCB promotes the voices, interests and well-being of all children and young people across every aspect of their lives. For information on joining NCB, call the Marketing Office on NCB's web site can be accessed at 2) The Child and Adolescent Self-harm in Europe (CASE) study is a seven year international research project funded by the European Commission Daphne Programme and coordinated by NCB. The project is due to be completed in ) More information on the National Inquiry on Young People and Self Harm is available at For further information on this release contact: Tracey Sands Tel: +44 (0) Zoe Mason Tel: +44 (0) Nadine Tapping Tel: +44 (0) Alison Love Tel: +44 (0) media@ncb.org.uk