Increasing knowledge about obsessive compulsive disorder and support for parents and schools: Evaluation of initiatives

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1 608513HEJ / Health Education JournalJassi et al. research-article2015 Article Increasing knowledge about obsessive compulsive disorder and support for parents and schools: Evaluation of initiatives Health Education Journal 1 10 The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalspermissions.nav DOI: / hej.sagepub.com Amita D Jassi a, Sarah Kolvenbach b, Isobel Heyman c, Trish Macleod d, Joel Rose d and Holly Diamond e a Obsessive Compulsive Disorder and Related Disorders Clinic, South London and Maudsley NHS Foundation Trust, London, UK b School of Public Health, University of Minnesota, Minneapolis, MN, USA c Institute of Child Health, University College of London, London, UK d OCD Action, London, UK e Department of Psychological Therapies, Queen Victoria Hospital, East Grinstead, UK Abstract Objective: Obsessive compulsive disorder (OCD) in children can be difficult to detect. Schools and families need to be made aware of the signs and symptoms of OCD in order to facilitate access to treatment. Parents of children with OCD may require support as well as knowledge. This study evaluated two initiatives aimed at increasing knowledge and support for parents and teachers. Method: This study was carried out in two parts. First, to raise awareness of the signs and symptoms of OCD, 266 schools in London were supplied with information packs. Knowledge of OCD was evaluated using a quiz before and after the dissemination of the packs. Second, groups of parents were given the opportunity to log into specially designed webinars that made it possible for them to learn about OCD and interact with other families. Feedback on webinars was collected through a survey. Results: Both the information packs and webinars were well received. One hundred and twenty seven teachers completed the quiz on OCD; knowledge of OCD increased after reading information packs. Twenty six parents attended webinars; parents reacted positively to being able to ask specialists questions and receive support from other families. Conclusion: Overall, the initiatives evaluated in this study appeared to lead to an increase in knowledge of OCD in teachers and provided access to further support for parents of children with OCD. Keywords Family support, information packs, schools, OCD, Webinars Corresponding author: Amita D Jassi, Obsessive Compulsive Disorder and Related Disorders Clinic, South London and Maudsley NHS Foundation Trust, Michael Rutter Centre, Maudsley Hospital, London SE5 8AZ, UK. amita.jassi@slam.nhs.uk

2 2 Health Education Journal Introduction Obsessive compulsive disorder (OCD) is characterised by repetitive, unwanted behaviours and intrusive recurrent thoughts. The World Health Organization (WHO) (2002) ranks OCD in the top 10 most debilitating illnesses in the world. OCD often emerges in childhood or adolescence (Geller et al., 1998) and is now widely recognised to be common in young people with a lifetime prevalence of 2% 4% (Heyman et al., 2006). Young people under 16 years of age spend the majority of their time at school or at home with their families. Therefore, these are key settings where OCD may be present and could potentially be detected by family members and/or teachers to ensure intervention as soon as possible. Some young people with OCD have difficulties in seeking support, therefore it is important that those around them are able to recognise the important signs and symptoms of OCD and that parents and teachers are able to facilitate access to appropriate support. OCD can often be difficult to detect in children for a number of reasons. In many cases, the disorder encompasses symptoms that can be embarrassing, for example, sexual obsessions (Fernández de la Cruz et al., 2013), or bizarre or magical thoughts (Volz and Heyman, 2007), which make it difficult for young people to be forthcoming about their symptoms. Children and adolescents may fear that they are mad or weird because of their symptoms, which may make it challenging to disclose what they are experiencing. Young people may also struggle to articulate the obsessions that may be driving their behaviour. Teachers and others working in schools are likely to observe OCD and its impact in certain ways. For example, a young person may struggle to concentrate in class because of intrusive obsessions, or struggle to complete work because of particular compulsions such as re-reading or re-writing. Schools may also become aware of issues with attendance or tardiness. Students may be more tired as a result of being up late engaging in rituals or they may avoid certain segments of the school day due to their obsessions. OCD can manifest itself in the school environment in a variety of ways, given the heterogeneous symptoms of OCD (see Lang et al., 2009). It has also been highlighted that there are higher rates of bullying of young people with OCD compared with those without mental health conditions (Storch et al., 2006). Schools might observe several of these signs in students, especially in young people who might be struggling to disclose their symptoms. OCD can also have a significant impact on family life. Most commonly, young people with OCD will involve family members in their rituals, which can cause distress among family members as well as overall family dysfunction (Peris et al., 2008). Examples of how family members may be involved in compulsions include helping with self-care or being repeatedly asked to give reassurance, for instance, regarding whether the door is locked properly. The repetitive nature of compulsions can lead to tension and disagreement within the family. If untreated, OCD can be a chronic and debilitating condition which is likely to persist into adulthood and represent a substantial burden for the sufferers, their families and society in general (Skoog and Skoog, 1999). There are more than 1.8 million young people living in London; based on the observed prevalence, there would therefore be 18,000 36,000 individuals with OCD. Once detected, there are good and effective treatment options available. In fact, the National Institute for Health and Care Excellence (NICE) (2005) in the UK has developed a stepped-care model for the most effective but least intrusive treatment for OCD. In a first step, providers should focus on raising awareness of OCD and making it easier for those affected to recognise the disorder. In order to achieve this goal, providers should attempt to seek and share information about OCD and its impact on those affected and their families and carers. The commencement of the treatment process then, is the responsibility of individual service providers but also public

3 Jassi et al. 3 organisations and the National Health Service in the UK. Without following this first step, young people would not be able to progress to the next stage, which involves a clinical assessment for OCD. The assessment is a crucial step in the process and is necessary for young people to gain access to Cognitive Behaviour Therapy (CBT), which is the recommended evidence-based psychological treatment for OCD (NICE, 2005). To date, there have been more than 10 randomised controlled trials of CBT in young people, which indicated between 40% 88% of children and adolescents achieve remission from OCD as a result of the treatment (e.g. Barrett et al., 2004; Williams et al., 2010). In addition to CBT, medication, specifically serotonin selective reuptake inhibitors, is recommended for moderate to severe OCD as an adjunct to the psychological treatment (NICE, 2005). Unfortunately, people with OCD often encounter long delays in accessing effective treatment. It has been reported that it has taken some patients more than a decade to have their symptoms recognised and access the type of therapy they need (Cullen et al., 2008). Individuals with OCD frequently go to professionals outside of mental health settings (e.g. general practitioners [GPs], nurses, teachers) for advice or treatment, therefore symptoms go undetected. There is a need for greater awareness of OCD in a range of non-psychiatric health care settings, and those in these settings need to be confident in recognising it (Heyman et al., 2006). Given the high rates of OCD in young people and that they spend most of their time at school, increasing awareness and recognition of OCD in educational settings is crucial. NICE guidelines highlight that it is the responsibility of public organisations, like the National Health Service, to provide and share information about OCD and its impact on individuals and their families or carers. Therefore, the charity, OCD Action, in collaboration with the National and Specialist OCD and Related Disorders Clinic for Young People at the Maudsley Hospital in London, has developed various initiatives to both raise awareness of OCD and increase access to support for families. This paper will focus on the evaluation of two of these initiatives: Information packs to increase awareness and knowledge of OCD in secondary schools (packs were developed for teachers, parents and young people, but only the teacher packs were evaluated for this study); Webinars to provide support to parents and carers and to enhance their understanding of OCD and its treatment (information given by professionals and support between families). Each initiative will be outlined below in the Methods section, in addition to the outcome of their evaluation in the Results section. Methods Information packs for schools The school information packs were written by two clinical psychologists and a consultant psychiatrist at the National and Specialist OCD and Related Disorders Clinic at the Maudsley Hospital in collaboration with Charity OCD Action. Three different types of information packs were developed; one for parents, one for young people and one for teachers. They included information on the characteristics and common manifestations of OCD, how parents and teachers can support young people with OCD, the steps young people can take themselves and where to seek support and guidance. Feedback on the three different information packs was obtained by the respective groups before they were widely disseminated copies of all the information packs can be accessed at

4 4 Health Education Journal This study focussed on evaluating only the teachers information pack, not the young person and parents packs. The aims of this pack were twofold; one was to raise awareness of OCD among teachers, with the aim of aiding them to identify pupils with OCD, and the second aim was to provide practical advice on how to manage OCD at school (including where and when to access professional support). The procedure by which the teachers information packs were evaluated was as follows. Volunteers from OCD Action approached secondary schools in London to invite them to participate in the study. If they agreed to take part, a volunteer visited the school and appropriate members of staff were invited to attend the meeting. During the meeting, volunteers delivered to staff a short talk about OCD Action and the information packs. The extent to which the packs increased knowledge of OCD was measured by asking teachers to complete the same 10-item questionnaire on OCD before and after reading the pack (see Appendix 1 for the questionnaire). Importantly, members of staff were not informed that they would be completing the questionnaire a second time before reading the pack. Webinars The webinars were designed to allow any parent of a child with OCD to log on and hear a talk being given by a mental health professional from the OCD and Related Disorders Clinic on a variety of topics requested by parents. The topics included the following: Coping With Transitions; Motivating and Supporting Your Child Through CBT; Medication: What, Why, How Long and What Effect?; Young Children and Pre-Teens With OCD; Teens and Older Children With OCD; OCD at School and Telling Other People; Supporting CBT/Exposure Response Prevention (ERP) at Home; Managing OCD at Home; A number of Open Q & A sessions. Webinars were conducted monthly for 1 hour and took place in the evening so they were accessible to families. Webinars were advertised on the OCD Action website and parents signed up to them. They were designed to be interactive where families could ask questions and share their concerns, which the speaker addressed, and also so families could interact with each other to offer support to one another. A total of 24 webinars ran over 27 months and between 6 and 20 parents attended. After each webinar, families were asked to complete a survey so feedback could be gathered on each webinar (see Appendix 1 for online survey questions). Results The results of the evaluation of the two initiatives will be discussed separately, since the webinars and the school information packs had differing aims and were evaluated using different methods. Information packs for schools Three hundred and ten London secondary schools were approached to participate in the study and 266 agreed to participate (85.8%). A total of 1065 packs were distributed across 266 London

5 Jassi et al. 5 Figure 1. Mean test scores before and after reading information packs. schools. Teachers and Special Educational Needs Co-ordinators (48.5%), school nurses (45.5%) and education psychologists (6%) were asked to complete the OCD questionnaire on two separate occasions, before and after reading the packs. Each participant s correct answers were summed to create a test score that could be compared before and after the intervention. Not all schools returned the questionnaires and some only completed the questionnaire before and not after reading packs. One hundred and twenty seven people completed both measures and these were analysed. Overall, there was an increase of 2.13 correct answers after reading the information packs (see Figure 1). A paired-samples t-test was conducted to compare the test scores before and after the intervention. There was a significant difference in the scores before (M = , SD = ) and after reading the information packs (M = 8.937, SD = ) with t(126) = and p <.000. The results therefore indicate that the school information packs significantly increased knowledge of OCD, its symptoms and treatment. Webinars To understand the impact of webinars and what areas were regarded as particularly helpful or in need of improvement, parents were asked to complete a short questionnaire indicating the extent to which they agreed with particular statements. Additionally, parents were given an opportunity to provide more general feedback on the course. Twenty-six parents completed the questionnaires. Results from these questionnaires were analysed and the results of each questionnaire item are displayed in Tables 1 and 2 below. The results show that overall parents agreed that the webinars were easy to understand and well delivered by the speakers, which suggest the presentation and content of the webinars were engaging and of interest to the participants. Parents also had the opportunity to express their opinion on the overall usefulness of the course and what aspects they deemed particularly helpful. For an overview of the individual responses to questions 3e, 4e, 5, 6 and 7a (see Appendix 1), which aimed to illicit further feedback, the comments were grouped according to recurring themes, as outlined below. Seven participants (26.9%) commented on how useful the interaction with an expert or specialist was, for instance, one mother mentioned when asked about the most interesting aspect of the session;

6 6 Health Education Journal Table 1. Number and percentage of parents responses for each question. QUESTION Strongly disagree Disagree Neutral Agree Strongly Agree 3a. The session was presented in a clear and easy-to-understand way 3b. The content was at an appropriate level for participants 3c. The presentation was given at the right pace 3d. The presentation was of a reasonable length 4a. The speaker was clear and organised 4b. The speaker was knowledgeable about the topic 4c. The speaker appeared enthusiastic about the subject 4d. The speaker was responsive to questions and encouraged participation (12%) 23 (88%) (4%) 9 (35%) 16 (61%) (4%) 5 (19%) 20 (77%) (8%) 5 (19%) 19 (73%) (15%) 22 (85%) (4%) 25 (96%) (12%) 23 (88%) (4%) 25 (96%) Table 2. Number and percentage of parents responses for each question. QUESTION Yes No 5. Did the online format of the seminars make it easier for you to attend the events? 26 (100%) 0 such specialist help which isn t accessible locally became instantly accessible, reassuring to parents. A large number of parents (11 participants, 42.3%) specifically mentioned being glad to have learned more about medication issues, the differences between medication and CBT, side effects and specific drugs. Six participants also pointed out how helpful it was to be able to interact with other parents in the same situation, one mother remarking how the session; helped us understand we are not alone. Similarly, five participants (19.2%) commented on the encouragement and reassurance they gained by attending the session, for instance, one father wrote; Am always reassured by these sessions even though our son now appears to have overcome OCD with the help of Maudsley who we cannot thank enough. Finally, seven participants (26.9%) referred to specific knowledge aspects of the session they found useful particularly on causes, symptoms and what to expect from therapy and two participants (7.6%) raised issues with previous treatment or other professionals. The questionnaire also gave parents the option to suggest potential changes that could be made to the sessions. Several interesting suggestions could be extracted, for instance, some participants

7 Jassi et al. 7 indicated that they would appreciate the chance to interact with other parents after the sessions as well. Additional suggestions included incorporating further case studies in the presentation and providing information on the impact OCD has on other family members, OCD in other age groups and specific information on topics such as self-harm and CBT. Discussion This study set out to evaluate newly developed initiatives for schools and families aimed at increasing OCD knowledge and facilitating access to support. The two initiatives outlined included information packs for teachers, which were disseminated across schools in London, and webinars for parents that provided access to specialist OCD information, as well as support from other families in a similar situation. The evaluation of the school packs indicates that the information provided led to a significant increase in knowledge of OCD among school personnel. The results suggest that the information packs successfully met their original aims. In terms of the webinars, the feedback indicates that overall parents were very happy with the speakers and the content delivered. It also suggests that there might be some specific issues parents face when seeking OCD treatment for their child. For example, many participants mentioned the usefulness of being able to talk to an expert and having easy access to someone who can answer their questions, which might suggest that this is not always the case in practice. Participants also frequently commented on issues with medication and the question of whether or not their child should be on them. This suggests that medication is an issue of particular importance to many parents and that they may benefit from further support and discussion regarding this area with practitioners. Informal feedback from schools indicated that in some instances, the information packs facilitated teachers recognising OCD symptoms and referring young people for an assessment. This corresponds to step 2 in the NICE guidelines (NICE, 2005), that is, recognition and assessment by a health care professional. Given the increase in knowledge and, in some instances, facilitating access to treatment, it seems important that these packs be more widely disseminated across the UK in the hope that there will be a greater awareness and recognition of OCD in young people in school, so they can be identified and treated in a timely manner. This would have significant implications in terms of earlier detection of OCD symptoms and access to support for young people. This can eventually lead to treatment being offered sooner and therefore the impact on the young person, their families and society in general being reduced (Skoog and Skoog, 1999). In terms of the webinars, the feedback indicates that there might be a general need among parents to have the opportunity to receive support and learn from one another. This is likely to reflect the emotional strain OCD can place on a family. The establishment of further forums or support groups for parents of children with OCD, therefore, seems to be required. The implication of this initiative could be that families may feel supported, which may enhance their ability to support their child with their OCD and/or treatment. It may also reduce the anxiety and stress often reported in parents of children with OCD (e.g. Peris et al., 2008). Limitations and recommendations This study has a number of limitations. First, it is possible that some volunteers may have unwittingly provided information about OCD when delivering the information pack. As a result, the increase in OCD knowledge, as shown in questionnaire scores, may not have been solely attributable to the information packs. Steps were taken however to reduce the likelihood of this situation by giving volunteers a script to follow. Second, the design of the study could have been improved using a randomised controlled trial, where participating schools would have been

8 8 Health Education Journal randomly allocated to either the intervention group or control group. Both groups would have been asked to answer the questionnaire on two occasions but only the intervention group would have read the information pack in between. Such a design would have increased confidence in the effectiveness of the pack and help eliminate other factors that may have enhanced participants scores such as reading the questions a second time and having longer to consider the answers. A randomised controlled trial was not carried out in this instance as difficulties recruiting schools into the control group were anticipated. Finally, a follow-up with secondary schools that participated in the study was not done, so an accurate figure of how many young people were referred onto services following the intervention could not be calculated. Further studies can be conducted to ask schools to keep an accurate log of the outcome of them identifying OCD symptoms in a young person. For example, teachers could note if the young person attended an assessment and then possibly treatment. This could help us to evaluate whether increasing knowledge in schools (Step 1 of NICE guidelines) facilitates recognition and assessment of OCD (Step 2 of NICE guidelines). An additional question in the evaluation could be included before and after reading the packs to ask how confident they feel in recognising OCD in the classroom and supporting children with OCD, given this was not explicitly measured in the study but was an aim of the packs. A large proportion of the participants in the study were pastoral staff, for example, nurses and special educational needs coordinators. It could be argued that they may have possessed some baseline knowledge about mental health conditions including OCD. It would be interesting to involve a broader range of teaching staff who have a high level of contact with pupils but who may have less knowledge about mental health issues. Although only speculative, it is predicted that a larger increase in knowledge may be observed if they were to participate. This study could be extended by collecting feedback on the parent and young person information packs. Gathering qualitative data regarding what people found helpful and suggestions for improvements would be most appropriate given the slightly different aims of these packs compared with teachers packs. Given that it personally affects their lives, both parents and young people are more likely to have carried out their own research into the condition. The aims of their packs, therefore, are focussed more on possible steps they may take themselves to make their situation easier, as well as signposting families to support. A limitation of the webinars is the small sample size. Hence, the findings cannot be generalised to other parents of children with OCD. In addition, while a number of parents indicated that they benefited from sharing experiences with other parents, it is difficult to know to what extent the support network was valued compared with the knowledge gained from experts from the OCD clinic or whether a combination of the two most was helpful. Parents were not explicitly asked this question and it may have been useful to ask to clarify what was most helpful. One parent suggested perhaps the next step would be to pilot an online parent support session following the informationgiving webinar, so perhaps an evaluation of both components could be undertaken. Finally, further research exploring the frequency and duration of webinars needed to help participants gain knowledge and support should be conducted. Given the clinical resources needed, this would be useful for a cost-benefit analysis. Given the positive results from both initiatives, it may be worthwhile researching whether similar initiatives have been developed for other conditions in young people such as depression or eating disorders. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

9 Jassi et al. 9 References Barrett P, Healy-Farrell L and March JS (2004) Cognitive-behavioral family treatment of childhood obsessive-compulsive disorder: A controlled trial. Journal of the American Academy of Child and Adolescent Psychiatry 43: Cullen B, Samuels JF, Pinto A, et al. (2008) Demographic and clinical characteristics associated with treatment status in family members with obsessive-compulsive disorder. Depression and Anxiety 25(3): Fernández de la Cruz L, Barrow F, Bolhuis K, et al. (2013) Sexual obsessions in pediatric obsessive-compulsive disorder: Clinical characteristics and treatment outcomes. Depression and Anxiety 30(8): Geller J, Biederman J, Jones S, et al. (1998) Obsessive-compulsive disorder in children and adolescents: A review. Harvard Review of Psychiatry 5: Heyman I, Mataix-Cols D and Fineberg NA (2006) Obsessive-compulsive disorder. British Medical Journal 333: Lang K, Krebs G, Stokes C, et al. (2009) Understanding obsessive compulsive disorder. British Journal of School Nursing 4(8): National Institute for Health and Care Excellence (NICE) (2005) Obsessive-compulsive disorder: Core interventions in the treatment of obsessive-compulsive disorder and body dysmorphic disorder. NICE Guidance. Available at: Peris TS, Bergman RL, Langley A, et al. (2008) Correlates of accommodation of pediatric obsessive-compulsive disorder: Parent, child, and family characteristics. Journal of the American Academy of Child and Adolescent Psychiatry 47(10): Skoog G and Skoog I (1999) A 40-year follow-up of patients with obsessive-compulsive disorder [see comments]. Archives of General Psychiatry 56(2): Storch EA, Ledley DR, Lewin AB, et al. (2006) Peer victimization in children with obsessive-compulsive disorder: Relations with symptoms of psychopathology. Journal of Clinical Child and Adolescent Psychology 35(3): Volz C and Heyman I (2007) Case series: Transformation obsession in young people with obsessive-compulsive disorder (OCD). Journal of the American Academy of Child and Adolescent Psychiatry 46(6): Williams TI, Salkovskis PM, Forrester L, et al. (2010) A randomised controlled trial of cognitive behavioural treatment for obsessive compulsive disorder in children and adolescents. European Child and Adolescent Psychiatry 19(5): World Health Organisation (WHO) (2002) Revised Global Burden of Disease. Geneva: WHO. Appendix 1 Information pack questionnaire 1. OCD is a type of: (a) Anxiety disorder (b) Psychosis (c) Learning disorder (d) Mood disorder 2. Approximately how many young people have OCD in the UK? (a) Less than 50,000 (b) ,000 (c) ,000 (d) Over 150, What are the primary symptoms of OCD? (a) Low mood (b) Delusions (c) Self-harm (d) Intrusive thoughts and repetitive behaviour 4. What is the recommended psychological treatment for young people with OCD? (a) Family therapy (b) Relaxation (c) Cognitive Behavioural Therapy (d) Hypnotherapy 5. What is a common sign of OCD in school? (a) Getting into lots of arguments or fights (b) Scars on the arm (c) Repeated lateness (d) Reports of seeing strange things

10 10 Health Education Journal 6. OCD symptoms usually affect children: (a) More at school (b) More at home (c) Equally at school and home (d) To a varying degree in home and school depending on their symptoms 7. If you suspect a child has OCD, what is the first thing you would do? (a) Do nothing, they will grow out of it (b) Raise your concerns with their parents or carer (c) Take them out of lessons (d) Discuss strategies with the young person 8. What is the most helpful way to respond to a child with OCD who appears extremely distressed and is struggling to complete their work: (a) Discipline them (b) Do not respond (c) Reassure them (d) Allow them to have a short break 9. Once a child is having treatment for their OCD, generally it is helpful to: (a) liaise with their therapist (b) ask how they are progressing (c) do nothing (d) do not discuss it with them until treatment has finished 10. Is the child s level of ability a key factor in whether they develop OCD or not? (a) Yes, OCD is seen mostly in bright, able children (b) Yes, OCD is seen in children with a learning difficulty (c) No, OCD affects children of different abilities (d) No, OCD is more linked to whether the child has behaviour difficulties Webinar survey What date did you attend the OCD Parents seminar? How old is your child? The session (choose answer: Strongly Agree/Agree/Neutral/Disagree/Strongly Disagree): The session was presented in a clear and easy-to-understand way. The content was at an appropriate level for participants. The presentation was given at the right pace. The presentation was of a reasonable length. Please add any other comments The speaker (choose answer: Strongly Agree/Agree/Neutral/Disagree/Strongly Disagree) The speaker was clear and organised. The speaker was knowledgeable about the topic. The speaker appeared enthusiastic about the subject. The speaker was responsive to questions and/or encouraged participation. Please add any other comments What was the most useful or interesting aspect of the session? In what specific ways did the sessions help you to support your child or deal with and understand your child s OCD? Is there anything else you would add, or any topics you would like to see covered in the future? Did the online format of the seminars make it easier for you to attend the events?