The Maudsley obsessive—compulsive disorder (OCD) children's clinic is a national specialist clinic that was set up to assess and meet the needs of young people with OCD. OCD is a condition that affects 1 in 100 children and adolescents (Reference Valleni-Basile, Garrison and JacksonValleni-Basile et al, 1994; Hayman et al, 2001). The disorder is characterised by the intrusion of unwanted thoughts or disturbing images (obsessions) and the need to carry out repetitive behaviour, such as hand-washing or checking (compulsions). There is often a marked degree of distress and, in many cases, performance of the rituals is associated with a reduction in feelings of subjective discomfort.
As a new service, responding to the wishes and needs of young people and their families was a priority and in order to facilitate this partnership, the clinic held 1-day annual workshops/conferences for children and families. Parents and children attending the clinic were able to meet other families as well as clinic staff, and they could talk and share ideas about OCD. The feedback from conferences was that the children had valued meeting other young people with OCD and wanted more group activities or meetings. We therefore decided to set up a pilot supportive—educational group for young people with OCD.
Method
Invitations to join the group were sent to 14 patients who were currently attending the clinic. Seven young people, five boys and two girls (mean age: 14 years 4 months; age range: 11 years 11 months to 16 years 6 months) agreed to take part. All had previously received, or were in the process of receiving, individual cognitive—behavioural therapy specifically for OCD. The group was facilitated by two clinicians (U.C. and C.C.) and consisted of 6-weekly sessions lasting for 1½ hours. A room was made available where parents could meet each other.
Content of the group sessions
Session one: introduction and psychobiology
After introductions, group rules on issues such as time-keeping and confidentiality were established. The first session focused on the ‘anxiety responses to fear’ model. Each participant was asked to think about how the body reacts to various types of threat or stress. This enabled participants to learn about and discuss their own physiological responses when they were anxious.
Session two: OCD story
Group members took part in an exercise based on ‘externalising’ their difficulties (Reference White and EpstonWhite & Epston, 1990). They were divided into small groups and given the task of drawing a real or fictional animal. They were then asked to create a story for their particular animal. First, they had to imagine that their animal suffered from a form of OCD and write down how they thought it would be affected. Then they were asked to write down what form of help their animal should seek out. Finally, they were asked to describe what happened at the end of their story. This proved to be an enjoyable and creative exercise. It helped the participants to get to know each other better and enabled them, indirectly, to bring in and reflect on their own experiences.
Session three: coping with the effects of OCD
The third session involved generating ideas about general problems that occur with OCD. Participants were encouraged to suggest universal difficulties, such as problems with school, relationships, sleep, etc. They then had to generate ‘coping’ mechanisms for these difficulties. Ideas mentioned included talking to friends, relaxation and pursuing hobbies and interests. The group later looked at a CD-ROM that had been developed by the OCD team. The CD-ROM was funded by an award from the Wellcome Trust in its Science on Stage and Screen programme, and is available from the national charity for OCD, Obsessive Action (http://www.obsessive-action.demon.co.uk). It contains information and video clips of young people talking about OCD. Finally, group members were split into pairs and encouraged to share personal experiences of coping with OCD.
Session four: family and school issues
Participants discussed the impact of OCD on their families and consequent problems that arise at home. They carried out an exercise designed to enable them to identify personal support networks. They then discussed and shared issues relating to how OCD intrudes on school life, homework and examinations. Practical suggestions were discussed for tackling problems in school, such as letting teachers know about OCD, getting homework completed in a set period of time and getting special help with examinations.
The remaining time was spent designing creative information posters on OCD for school notice boards.
Session five: treatment
The fifth session involved a discussion centred on medication and behavioural therapy. Participants were able to share and reflect on experiences of different types of medication. Each participant was invited to give an account of their own personal experiences of using cognitive—behavioural techniques to combat OCD.
Session six: relapse prevention
Session six focused on the importance of practising techniques that prevent relapse. A vignette was provided, in which a 16-year-old girl, who had been treated for OCD and had been symptom-free for a year, was worried that some of her original symptoms were ‘creeping’ back into her life. The group was asked to provide practical ideas and advice for the young girl. The remaining half of the session was spent consolidating ideas learnt from the group. Feedback forms were also completed.
Evaluation and feedback
Since the members of the group were at various stages of treatment and some were still receiving individual behavioural therapy, evaluation of OCD symptoms before and after group treatment could not have been used as the sole measurement of the effect of the group. However, questionnaires were administered to eliminate concerns that working in a group and sharing experiences could have a detrimental effect on OCD symptoms. Participants therefore completed the Children's Obsessive—Compulsive Inventory (ChOCI) and their parents filled in the parental version of the same questionnaire (PChOCI), both pre- and post-group. This questionnaire is a self-complete instrument, is easy to fill in and has previously shown good internal consistency and scores that correlate with the Children's Yale—Brown Obsessive—Compulsive Scale (Reference Scahill, Riddle and Mcswiggin-HardinScahill et al, 1997). It is based on the Maudsley Obsessive—Compulsive Inventory (Reference Hodgson and RachmanHodgson & Rachman, 1977) and has been submitted for publication. The results showed that pre- and post-CHOCI group scores for parents and children remained relatively stable, with no overall improvement or deterioration.
Participants and their parents also completed a feedback questionnaire at the end of the group. All the young people said that they had enjoyed the group and found it helpful. In particular, all said they valued meeting others with OCD and felt less isolated. They also said that they had learnt more about medication, coping skills and the impact of OCD on those around them. The parents' feedback was that they felt the group was beneficial for their children, although one parent had felt that their child's symptoms had deteriorated while attending the group.
Parents also found it helpful to meet other parents in a similar situation, as they felt that they could understand each other's difficulties and predicaments. They also felt it was helpful for the group to include a mixture of families who were at different stages of their child's OCD recovery/treatment. The majority of parents also commented that a facilitator would have been helpful in the parents' group in order to provide practical advice and information.
Discussion
Previous groups mentioned in the literature provide specific behavioural therapy for patients with OCD (Reference Van Noppen, Steketee and McCorkleVan Noppen et al, 1997; Reference Thienemann, Martin and CreggerThienemann et al, 2001). Since the children in this group had received, or were in the process of receiving, behavioural therapy, the aim was to provide support and education on OCD. The group sessions were structured in order to include teaching, group discussion and sharing of personal difficulties. The evaluation forms showed that over half of the children and parents felt that the OCD symptoms had either diminished or stayed the same. Overall, the feedback from the young people and their parents was that the group was popular and helped increase user knowledge on OCD. The young people also reported that they felt less isolated. Children with OCD often keep their symptoms secret as they may fear they are going ‘mad’, or because they fear the consequences of telling others. Meeting other children with OCD might help to break down the stigma associated with the condition, reducing the feelings of isolation. Given that the feelings of isolation of young people seemed to diminish after the group and they reported that they had benefited from learning additional coping techniques, other more useful ways of measuring the group's efficacy might be to evaluate changes on measures such as self-esteem, mood or locus of control.
This was a pilot exercise and the plan is to run further groups and meetings to help children and families with OCD.
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