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Self-Help Treatments for Childhood Obsessive-Compulsive Disorder Including Bibliotherapy

  • Australian Catholic University, Brisbane Australia


Innovations in CBT for Childhood Anxiety, OCD, and PTSD - edited by Lara J. Farrell April 2019
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15 Self-Help Treatments for
Childhood Obsessive-Compulsive
Disorder Including Bibliotherapy
Georgina Krebs and Cynthia Turner
Although obsessive-compulsive disorder (OCD) was once considered to be
rare in youth, epidemiological studies have since estimated prevalence rates of 0.25 to
4 percent among children and adolescents (Douglass, et al., 1995; Flament et al., 1988;
Heyman et al., 2003; Zohar, 1999). The disorder is known to be highly impairing and
can have devastating effects on young peoples lives across multiple domains (Lack
et al., 2009; Piacentini et al., 2003). Furthermore, in the absence of treatment the disorder
typically follows a chronic course. In adulthood, OCD has been ranked among the top
10 most disabling illnesses by the World Health Organization (Murray & Lopez, 1996).
Over the last decade, substantial evidence has accumulated for the efcacy of cognitive
behavioral therapy (CBT) in treating pediatric OCD (Sánchez-Meca, et al., 2014;
Watson & Rees, 2008). In line with the robust evidence base, there is international
consensus that CBT is a rst-line treatment for OCD in children and adolescents (Geller
& March, 2012; NICE, 2005). However, data suggest that the majority of OCD sufferers
fail to access CBT, and there is an urgent need to increase the availability of CBT for this
population. Self-help treatments offer one promising solution to this major challenge.
This chapter will focus on reviewing evidence for self-help CBT-based interven-
tions for children and adolescents with OCD; that is, interventions that do not require
therapist input and are fully self-guided. In this chapter, we will rst outline the
barriers that currently exist to young people accessing CBT for OCD, and in so
doing, highlight the need for innovation and the potential value of self-help inter-
ventions in meeting this need. We will then review the existing self-help materials
available and the evidence for their efcacy. Given the paucity of research in this
eld, we will draw on evidence for self-help in adult OCD populations and consider
the implications for children and adolescents. Finally, we will suggest priorities for
future research and practice and highlight key practice recommendations.
Overview of the Issue: The Need for Innovation
Barriers to Accessing CBT for Youth with OCD. Studies of service utilization in
pediatric OCD are sparse. However, in adult populations it is estimated that
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59.5 percent of OCD sufferers worldwide do not access any treatment, making lack
of treatment more common in OCD than anxiety and mood disorders (Kohn et al.,
2004). The rates of CBT utilization may be even lower given that other treatments,
such as pharmacotherapy, are often more widely available (Chowdhury, Frampton,
& Heyman, 2004). Even when OCD sufferers do manage to access treatment, it is
generally only after long delays. Studies in adult samples have reported delays of 15
to17 years in accessing effective treatment for OCD (Hollander et al., 1997; Pinto
et al., 2006). Moreover, childhood-onset OCD has been shown to be associated with
equally lengthy delays in help-seeking, with Stengler and colleagues nding that
those who reported onset of disorder before the age of 17 had their rst professional
contact on average 11.7 years after onset of their disorder (Stengler et al., 2013).
These ndings are disconcerting, not least because a longer duration of illness is
predictive of poorer long-term outcome (Micali et al., 2010), highlighting the
importance of early intervention for this disorder.
An important question is why do young people with OCD have such difculty
accessing CBT? The answer is likely to be multifaceted, with barriers occurring at
many levels. OCD sufferers may be reluctant to seek help due to stigma (Goodwin
et al., 2002), shame, and embarrassment about their OCD symptoms (Barton &
Heyman, 2013; Marques et al., 2010), and/or poor insight (Geller et al., 2001).
Individuals from ethnic minority backgrounds may be particularly hesitant to seek
help due to differences in knowledge and cultural beliefs about OCD and its treat-
ment (Fernandez de la Cruz et al., 2015; Goodwin et al., 2002). For example,
a community-based survey study found that signicantly more Black African parents
than White British parents would seek help from the religious community (as
opposed to health services) if their child had OCD (Fernandez de la Cruz et al.,
2015). Inconvenience of sessions with respect to timings and location can be
a deterrent to attending CBT sessions (Marques et al., 2010). In addition, parents
may be reticent about accessing CBT due to the nancial costs of treatment (Kataoka
et al., 2002; Marques et al., 2010), including directly incurred treatment costs, the
cost of travel and loss of income from time off work.
Even when families would like to access CBT for OCD, it may not be readily
available. A case note review study conducted in a national, specialist OCD clinic in
the United Kingdom revealed that only a minority of cases had received CBT prior to
referral (Chowdhury, Frampton, & Heyman, 2004). Rates of CBT provision in the
United Kingdom did not increase over a 10-year period, despite the publication of
national clinical guidelines recommending CBT as a rst-line treatment (Nair et al.,
2015). Surprisingly, rates of other therapies (such as family therapy and psychody-
namic therapy) did increase signicantly over time, suggesting that there may be
a shortage of CBT-trained therapists within child and adolescent mental health
services. An additional problem is that even when CBT is offered, it may be
delivered in a suboptimal form (Krebs et al., 2015; Valderhaug, Gotestam, &
Larsson, 2004). A national survey conducted among clinicians treating pediatric
OCD in Norway found that although the majority of professionals reported using
CBT, only a third reported using exposure with response prevention (E/RP) techni-
ques regularly (Valderhaug et al., 2007). This is at odds with the evidence-based
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CBT protocols for OCD in youth (e.g., March & Mulle, 1998), as well as clinical
guidelines (NICE, 2005; Geller & March, 2012), all of which highlight E/RP as
being the key focus of treatment for pediatric OCD.
In summary, evidence suggests that good quality CBT is not readily available or
accessed by children and adolescents with OCD in routine clinical practice. Barriers
in accessing CBT may stem from reluctance of families to seek help, high costs and
time commitment required for attending therapy, and a shortage of adequately
trained therapists. Self-help treatments could therefore play a key role in disseminat-
ing CBT in this population by reducing problems associated with shame and stigma,
geographical barriers, inconvenience, nancial costs, and limited therapist capacity.
The Approach to Innovation
A number of different self-help methods have been developed. These
methods include self-help books or bibliotherapy, developed either as a pure self-
help intervention, or as an adjunct to therapist-delivered CBT, and internet-delivered
CBT (iCBT). These approaches and the associated evidence for effectiveness are
discussed as follows.
Self-Help Books for Youth with OCD. To date, three CBT self-help books have
been written specically for children and adolescents with OCD (Derisley et al.,
2008; March & Benton, 2006; Sisemore, 2010). These books mirror the content of
evidence-based, therapist-delivered CBT protocols, encompassing psychoeducation
about OCD and anxiety, graded exposure with response prevention as guided by
a hierarchy, and relapse prevention. Talking Back to OCD (March & Benton, 2006)
was written for children and adolescents with OCD, whereas Breaking Free from
OCD (Derisley et al., 2008) and Free from OCD (Sisemore, 2010) are primarily
aimed at adolescents aged 11 to 16 years old. Each of the books include worksheets
for young people to complete, which are designed to facilitate understanding of OCD
and completion of E/RP tasks, and each chapter ends with a section written speci-
cally for caregivers, in order to assist them in supporting their child through the
Given that these self-help books are based on validated, face-to-face CBT proto-
cols, it is reasonable to conclude that the books are scientically grounded and
consistent with psychological theory and research. However, there is a dearth of
studies directly evaluating the efcacy of self-help books in treating childhood OCD.
Only one study to date has evaluated traditional bibliotherapy (bCBT) as
a standalone treatment for OCD in youth. Robinson and colleagues evaluated the
feasibility, acceptability, and efcacy of Breaking Free from OCD in a pilot trial
(Robinson et al., 2013). After a 3-week monitoring period to assess symptom
stability, eight 11- to 16-year-olds with OCD were given the self-help book.
Participants were given guidelines with recommendations on which chapters to
read over an 8-week period. All participants received weekly telephone calls from
a therapist to monitor adherence and assess symptom severity, but importantly no
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treatment advice or therapeutic support was given. All eight participants completed
the study, although only three read all chapters. Seven participants provided feed-
back on acceptability, with all 7 reporting that the book was just rightin terms of
readability and 71 percent saying that the book was helpfulfor ghting OCD.
Furthermore, signicant reductions in OCD symptoms were observed on a clinician-
administered measure of OCD severity for the group as a whole (the Childrens Yale-
Brown Obsessive-Compulsive Scale) (CY-BOCS; Scahill, et al., 1997). While
reductions were statistically signicant, the overall degree of improvement was
modest. In fact, the mean reduction in symptom severity as measured by the CY-
BOCS was 18.5 percent, which is well below the 35 percent reduction that is widely
accepted as the cutoff for dening treatment response (Skarphedinsson et al., 2017).
Furthermore, no signicant effects were observed on self- and parent-report mea-
sures of OCD. Therefore, while this pilot study provides preliminary evidence for the
feasibility and acceptability of bCBT for youth with OCD, there remains room for
improvement, and a need for further research to carefully evaluate the efcacy of
such interventions.
Self-Help Material as an Adjunct to Therapist-Delivered CBT. Written self-help
materials have also been evaluated as an adjunct to face-to-face CBT in youth with
OCD. Bolton and colleagues conducted a randomized controlled trial to evaluate
brief CBT combined with self-help (Bolton et al., 2011). Ninety-six children and
adolescents (aged 1018 years) were randomized to one of three conditions: full
CBT (12 sessions), brief CBT (on average 5 sessions), or a wait-list control.
The brief CBT package was supplemented by ve self-help CBT sessions, which
were presented as workbooks for the young people to complete at home in between
face-to-face sessions. The content of the workbooks was designed to build on the
concepts and strategies that had been introduced in the previous session, and in this
sense was not providing novel information per se but instead was designed to
facilitate consolidation and continued implementation of CBT techniques.
As expected, both treatment groups displayed superior outcomes compared to the
wait-list control group, thereby demonstrating their efcacy in reducing OCD
severity. Importantly, the brief CBT plus self-help group showed equivalent out-
comes to the full CBT group, suggesting that self-help may be a useful supplement to
CBT, and may provide an effective way of increasing treatment capacity in services
within the context of limited service-level resources.
Internet-Delivered CBTas a Pure Self-Help Intervention. In line with the general
move towards utilizing technologies to deliver CBT (see Chapter 4 from this
section), efforts in recent years have focused on developing web-based self-help
CBT interventions for young people with OCD. A novel program was recently
developed, called OCD? Not Me!, aimed at adolescents 12 to 18 years (Rees,
Anderson, & Finlay-Jones, 2015). Unlike therapist-assisted internet CBT (iCBT)
programs that have been developed for OCD (Andersson et al., 2012; Lenhard et al.,
2017), OCD? Not Me! is fully self-guided and requires no therapist support.
The program includes psychoeducation about OCD, goal-setting, constructing
a hierarchy and graded E/RP. The program is interactive and responds to content
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provided by young people. For example, E/RP tasks are automatically ordered into
a hierarchy based on the subjective anxiety ratings that a young person enters into the
worksheets. A component for caregivers is included in the program, which provides
psychoeducation, advice on how to support their child throughout the treatment, and
strategies for reducing family accommodation of symptoms.
In a preliminary open trial, 334 youth were screened for inclusion in the study.
Only participants in the target age range of 12 to 18 years, meeting inclusion criteria
and completing pretest measures, were included in the analyses (n=132).
The pretreatment mean of 11.56 (SE=3.01) on the Childrens Florida Obsessive-
Compulsive Inventory (C-FOCI; Storch et al., 2009) was consistent with pretreat-
ment means reported in clinical samples of youth with OCD (e.g., Storch et al.,
2009). The number of participants that commenced each stage of the program at the
time the data were collected were: stage 1 (n=116), stage 2 (n=67), stage 3 (n=27),
stage 4 (n=16), stage 5 (n=14), stage 6 (n=12), stage 7 (n=11), and stage 8 (n=11).
Despite the relatively small number of young people completing all stages of the
program, participants showed signicant reductions in OCD symptoms (P<.001) and
severity (P<.001) between pre- and posttest, with effect size calculations indicating
a moderate effect for the changes in OCD symptoms between pre- and posttest
(d=.64) (Rees, et al., 2016). The mean reduction in OCD symptom severity was
50 percent, as measured by the C-FOCI, suggesting clinically meaningful change.
While this nding requires replication and further evaluation in the context of an
RCT, the results are encouraging and suggest that online self-guided CBT could be
an effective method to dramatically increase access to CBT among adolescents with
Given the very preliminary stage of research into self-help interventions for youth
with OCD, the evidence pertaining to adult self-help interventions for OCD will be
briey reviewed.
The Evidence Base for Innovation
Self-Help Interventions for OCD in Adult Populations. The self-help programs
available for young people with OCD are small compared with the options currently
available for adults. A search on the Internet book dealer reveals an
impressive list of bibliotherapy materials for adults with OCD. Many of the self-help
books (e.g., Overcoming Obsessive-Compulsive Disorder: A Self-Help Guide Using
Cognitive Behavioral Techniques; Veale & Willson, 2009) have been written by
clinical academics who develop and evaluate CBT programs for adult OCD. Like the
self-help books written for young people with OCD, the books for adults typically
represent a variation of validated face-to-face CBT packages. However, very few
have been scientically evaluated to establish efcacy in a self-help format, in either
a guided (i.e., with minimal therapist support) or unguided (i.e., pure self-help)
delivery format.
A small number of uncontrolled studies have demonstrated small to moderate
within-group effect sizes (Hedges g=0.040.51) for bibliotherapy in the treatment
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of adults with OCD (Gilliam et al., 2010; Tolin et al., 2005; Moritz et al., 2011).
Three small randomized controlled trials have demonstrated the efcacy of unguided
bCBT (Hauschildt, Schroder, & Moritz, 2016; Tolin et al., 2007; Vogel et al., 2014),
again with small to moderate effect sizes (g= 0.130.65). Tolin and colleagues
compared face-to-face CBT with bCBT in a sample of 41 adults (mean age 38.18
years, SD 13.10 years) with moderately severe OCD. bCBT participants were given
the book Stop Obsessing! How to Overcome Your Obsessions and Compulsions (Foa
& Wilson, 2001), which provides instructions for self-administered E/RP, along with
a written schedule of suggested chapters to read during a six-week period, but with
no therapist support. Participants receiving face-to-face CBT displayed signicantly
greater reductions in OCD symptoms and self-reported functional impairment com-
pared to those receiving bCBT, but importantly both conditions resulted in signi-
cant improvements. Similarly, a small but positive effect of bCBT was found by
Vogel et al. (2014), who compared bCBT to therapist-delivered CBT via video-
conferencing (VCT), and a wait-list control condition, in a sample of 30 adults (aged
2840 years) with moderately severe OCD. Participants in the bCBT condition
received Mastery of Obsessive-Compulsive Disorder: A Cognitive Behavioral
Approach (Foa & Kozak, 1997) with no therapist guidance. Results showed that
VCT was associated with superior outcomes compared to bCBT, but that both were
superior to the wait-list condition, thereby demonstrating the efcacy of bCBT. In the
third RCT, Hauschildt, Schroder, and Moritz (2016) evaluated the effectiveness of
myMCT (My Metacognitive Training for OCD), a freely available self-help book
drawing on cognitive and meta-cognitive models of OCD. Compared to participants
receiving an education only control condition (i.e., OCD-specic written education
material, but no treatment-related information), participants receiving the bCBT
reported slightly greater levels of symptom improvement on self-report measures
of OC symptoms and depression. Taken together, the results of these RCTs demon-
strate the feasibility and potential benet of unguided bCBT for at least some
individuals with OCD. To date however, the research in this eld is limited, and
currently there are no studies that have investigated predictors or moderators of
response to bCBT. This is in stark contrast to the broader literature pertaining to
bCBT for adult anxiety and depression, where reviews have found that bCBT is
signicantly more effective than placebos or waiting lists, and may even be as
effective as therapist delivered psychological therapy (e.g., Den Boer, Wiersma, &
Van Den Bosch, 2004; Scogin et al., 1990). Hence, there remains a clear need to
further evaluate the efcacy of self-help bibliotherapy for adult, as well as childhood
Far more scientic evaluation has been conducted on the use of computerized
(cCBT) or iCBT self-help interventions for adults suffering with OCD. One of
the earliest programs, BT Steps (Behavior Therapy Steps), developed by OCD
researchers John Greist, Isaac Marks, and Lee Baer, was initially developed as
an interactive telephone-activated voice-response computer intervention, sup-
ported by a manual (Marks et al., 1998). Interactive voice response is
a technology that allows a computer to interact with the human user through
the use of voice and tones input via the telephone keypad. The program provided
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initial psychoeducation, then guided participants through E/RP in a series of
steps, with interactive voice response prompts. BT Steps was carefully evalu-
ated, with an initial two non-comparative trials (Barchofen et al., 1999; Greist
et al., 1998), followed by two randomized controlled trials, with one comparing
BT Steps to therapist-delivered telephone CBT or relaxation (Greist et al., 2002),
and another comparing different methods of delivery of BT Steps, one with on-
demand telephone support and one with scheduled telephone support (Kenwright
et al., 2005). The within-group effect size for BT Steps (ES = 0.84) was found to
be high compared to relaxation (ES = 0.35), although not as high as telephone
therapy (ES = 1.22); however, the self-help patients who progressed through to
self-exposure achieved clinical outcomes comparable to those who received
therapist-assisted exposure. BT Steps was concluded to be a time efcient and
cost-effective method of making therapy more widely available to those who
needed it. BT Steps evolved into an online program called OC Fighter. Meta-
analytic support for BT Steps was offered by two studies, both concluding it was
clinically efcacious for adult OCD (Mataix-Cols & Marks, 2006; Tumur et al.,
2007). Following these impressive beginnings, cCBT for adult OCD has evolved
to delivery via the internet (iCBT), and there are now a number of empirically
supported iCBT interventions that have undergone careful evaluation.
The technology innovations that have been developed and evaluated will be
further discussed in Chapter 4 of this section.
Mediators and Moderators of Change
As noted throughout this chapter, while innovations in delivery of psycho-
logical therapy for youth with OCD have sought to make evidence-based treatment
more accessible, evaluation of these innovations remains to be done in sufcient
depth. Carefully designed randomized controlled trials to evaluate outcome have yet
to emerge, and consequently, we have almost no knowledge of factors that may
mediate or moderate change. Nonetheless, given that research with adults is more
advanced than the research with young people, it is worth brieyreecting on what
we may be able to glean from the adult OCD self-help literature.
Certainly, self-help methods, including bCBT, cCBT, and iCBT, hold promise.
However, even in adult studies, relatively little is known about whom these treat-
ments may work best for as research pertaining to predictors and moderators of
outcome is scarce. Neurocognitive variables may be especially important in self-help
interventions given the increased initiative, comprehension, and self-regulation
required (Diefenbach & Tolin, 2013). Diefenbach and Tolin (2013) compared guided
bCBT treatment responders (n=5) and nonresponders (n=13) on exploratory clinical
moderator variables. Responders and nonresponders did not differ from each other
with regard to OCD severity, global illness severity, depression severity, reading
ability, treatment expectancy, or motivation. However, the groups differed signi-
cantly on self-reported problems with attention, with nonresponders reporting sig-
nicantly more severe problems with attention. This nding underscores the
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importance of further research to identify the relevant clinical and/or demographic
variables to enable patient-treatment matching.
A crucial difference between adults and youth is the degree of familial involve-
ment that may or may not be required in treatment. While for adults, an important
question seems to be what degree of therapist involvement is required to optimize
outcomes, for youth, the key questions may be what degree of therapist and parental
(or carer) involvement is required to optimize outcomes. Furthermore, there is
a question as to whether bCBT programs are outdated for youth, given that we live
in a digital society and young people in particular may be more willing to engage
with interactive, online programs compared to self-help books. On the other hand,
there may also be merit in evolving both bCBT and iCBT models of self-help in order
to maximize accessibility across different social and cultural groups.
Clinical Case Illustration
The following case will briey illustrate how self-help methods may be
utilized in treating youth with OCD.
Ellie was twelve years old. She had experienced the onset of OCD symptoms in the
past ten months, which seemed to have been triggered by her older sister suffering
from a vomiting virus. Ellie began being fastidious about washing her hands
whenever she touched anything that belonged to her sister. However, this quickly
extended to washing her hands whenever she touched anything that belonged to
other people. While this behavior developed initially at home, Ellie was soon
washing her hands at school and avoiding touching anything that belonged to
others. When the teacher advised Ellies parents that Ellie was spending the recess
and lunch breaks in the bathroom washing, Ellies parents sought help.
Ellie was diagnosed with OCD. Her therapist recommended that an online CBT
program might be helpful. Ellie was well supported by her parents and seemed
highly motivated to overcome her OCD. The family agreed to an online program.
Ellie and her parents spoke with the therapist about the importance of engaging
with online therapy in the same way in which they might engage with a therapist in
the clinic. They discussed the importance of making a regular time to complete
sessions, and to nd time each day to complete homework activities and to keep
a record of what she was doing. Ellie was excited about getting started and when she
received her login details from the therapist, Ellie commenced her rst online
session that evening.
Ellies therapist telephoned the family after two weeks. Ellie had completed
the rst two online chapters and had a good understanding of what OCD was
all about. She understood how her fears of getting sick were being maintained
by her handwashing rituals, and by avoiding touching things that belonged to
others. Ellie had started to plan an exposure hierarchy and was looking forward
to completing the next chapter,when she would begin to face her fears. When
the therapist telephoned the family after another two weeks had passed, she
learned that Ellie had already started her exposure tasks and was busy cutting
back her handwashing rituals by reducing the amount of time she was taking to
wash her hands, and by messing up the special rituals that she had developed in
order to ensure her hands were properly free from germs. These rituals had
involved counting to 19 while she carefully soaped each nger one-by-one, and
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then washed her hands and wrists right up to her forearms. When the therapist
spoke to Ellie, Ellie told her that she was now only using a small amount of
soap and that she was counting to 6 or below while she washed each nger.
The therapist congratulated Ellie on the great progress that she had made and
encouraged her to keep practicing her exposure task and messing up the
handwashing rituals. Ellie told her how much she loved recording her
homework on the computer and seeing her OCD symptoms reducing.
Ellie continued to engage with the online program right through until the end of
the eight chapters. She had learned not only about the special rituals that OCD
could trick her into using, she had also learned that OCD liked to trick her thinking
about things as well. She learned that it really wasnt very likely that she would get
sick by being around other people, and she was determined not to let OCD creep
back into her life. Ellie and her parents reported nding the online program easy to
follow and understand, they liked the examples given, and they liked being able to
see the changes Ellie made each week being presented on the screen. They found the
online format very convenient.
Challenges and Recommendations for Future Research
Whilst there are clear benets of self-help approaches to treatment of OCD,
there are also challenges. Critics to self-help interventions argue that the therapist-
client relationship may be critical in encouraging engagement, individualizing care,
and meeting patient expectations regarding the legitimacy and quality of psycholo-
gical therapy. Recent qualitative research investigating the patient experience for
adults with OCD completing guided bibliotherapy (6 hours of professional support)
and cCBT (1 hour of professional support) indicated that patient engagement with
self-help interventions was mixed, with some perceiving limitations and some
perceiving signicant benet (Knopp-Hoffer et al., 2016). The addition of profes-
sional support was widely regarded as important, lending weight to the need for
exibility in the provision of self-help interventions for OCD, and therapists being
responsive to patient preferences when prescribing a modality of therapy (Knopp-
Hoffer et al., 2016). Professionals delivering these self-help interventions also
expressed mixed views, although generally felt that these interventions offered
signicant opportunity to patients and services running on limited resources
(Gellaty et al., 2017).
The directions for future research are many and varied. There is a clear need to
further develop and evaluate self-help programs for youth with OCD and their
families, using scientically robust methods. These programs need to consider the
method of self-help (including bCBT, cCBT, iCBT, and mobile applications), the
degree of involvement of family members, and the degree of guidance that needs to
be given to families in order to maximize success. Research needs to consider what
will optimize youth engagement with self-help methods and ensure that they remain
engaged through to the completion of the program, since drop-out rates can be high
and participants who complete self-help interventions are likely to achieve greater
levels of clinical outcome than those who disengage (Mataix-Cols et al., 2006).
It may be that some type of contingent reinforcement could be built into these
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programs in order to optimize compliance and engagement with the strategies
A pertinent but unanswered question is: for whom is self-help most appropriate? One
consideration may be symptom severity. Treatment management guidelines currently
recommend self-help for those with mild symptoms (NICE, 2005). However, this
recommendation is not yet empirically grounded and future studies should test the
extent to which symptom severity predicts response to self-help in youth with OCD.
There is some research to indicate that quite severe presentations of adult anxiety and
depression may indeed be responsive to iCBT, and that signicant risk can be safely
managed using carefully designed protocols (Nielson et al., 2015; Titov et al., 2015).
Another consideration is patient characteristics such as gender, age, ethnicity, and
even treatment history. For example, would older adolescents respond better to self-
help interventions than younger adolescents, or vice versa, given the differential role
that family members may play? Might self-help be particularly useful for certain
ethnic groups, who may be reluctant to seek mental health services due to certain
cultural beliefs (Fernandez de la Cruz et al., 2015; Goodwin et al., 2002)? There is
some evidence that youth with OCD who have completed a previous trial of CBT
may respond less well to iCBT than youth who have not previously completed CBT
(Lenhard et al., 2016), suggesting that self-help may be more suitable for treatment-
naïve patients. There seems to be a wide array of questions that could be investi-
gated; however, given the limited number of self-help studies for youth with OCD,
identication of predictors and moderators of outcome remain some way off.
Longevity of self-help interventions also requires careful consideration. Many of
the cCBT or iCBT programs discussed have been developed by researchers using
grant funding. However, when grant funding ceases, the issue of how to ensure that
effective programs remain available to youth is a signicant one. Any technology-
based intervention requires maintenance and careful implementation of technology
updates, requiring careful management and thoughtful decision-making. It may be
that commercialization of iCBT programs requires consideration, or long-term
government investment. Hill et al. (2017) present a thoughtful analysis of challenges
and considerations when developing digital mental health innovations.
Recommendations include collaborative working between clinicians, researchers,
industry, and service users in order to successfully navigate challenges and to ensure
e-therapies are engaging, acceptable, evidence-based, scalable, and sustainable.
However, the translation from lab to real world is never without incident, and
effectiveness trials rarely obtain outcomes equivalent to those seen as efcacy trials.
Thus, carefully managed effectiveness trials will be required in the future.
Evaluation by independent research groups, rather than those with commercial
interests in an intervention, is also of high priority.
Given the prevalence of OCD in youth, the demand for CBT is likely to
continue to outstrip the supply provided by trained therapists in a traditional, face-to-
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face format. For this reason, there is a clear need to identify models of service
delivery that optimize the use of available resources, enabling the dissemination of
effective treatment to those in need. Stepped-care models propose intervention at
varying levels of intensity, depending on the severity and complexity of a patients
symptoms. The principle is to offer effective treatment at the least intensive and
intrusive level appropriate. Self-help could potentially be integrated into stepped-
care models as a low-intensitytreatment, perhaps primarily for young people with
OCD who have relatively mild and straightforward symptom presentations (NICE,
2005). In support of this suggestion, there is emerging evidence for the feasibility,
acceptability, and efcacy of different versions of self-help in young people with
OCD, including bCBT and iCBT. While this research is still in its infancy, it is
backed by a larger body of evidence supporting the use of self-help in adults with
OCD, anxiety, and depression. However, many questions remain unanswered and
there is a clear need to further understand for whom self-help is appropriate and how
self-help outcomes can be maximized.
Key Practice Recommendations.
Many young people with OCD do not seek professional help for a variety of
Self-help interventions, including bCBT and iCBT offer potential to close the
treatment gap in OCD.
Research with adults suggests that self-help approaches can be effective in redu-
cing OCD symptoms and severity.
There are a variety of self-help approaches available to offer to young people who
present with OCD.
Methods for optimizing treatment success in utilizing these methods have yet to be
Careful monitoring of engagement with self-help approaches and monitoring
symptom reduction would aid in facilitating optimal outcomes.
Support of ongoing outcome evaluation is essential in order to move this eld
forward so that benet can be offered to many.
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Full-text available
This study aimed to review the existing published and grey literature describing the concepts of self-management, self-care, and self-help, and to capture strategies or techniques related to these concepts, for adolescents with emotional problems. Emotional problems are rising amongst adolescents, yet timely access to specialist mental health treatment is limited to those with greater severity of mental health difficulties. Self-management, self-care, and self-help strategies may be used by adolescents with emotional problems both in terms of those waiting for treatment and to prevent relapse. Given the overlap in existing definitions and the lack of clarity around these concepts in an adolescent mental health context, a scoping review of the literature is warranted to provide clarity. Eligible studies were those involving adolescents aged 10 to 19 years with symptoms of emotional problems. Studies referenced self-management, self-care, or self-help, not involving a professional, in this population. Quantitative, qualitative, economic, and mixed methods studies, as well as systematic, scoping, and literature reviews, from 2000 onwards and in the English language, were eligible for inclusion. A systematic search was conducted of both published and grey literature. Databases searched included PsycINFO, Medline, Embase, Web of Science, and CINAHL Plus. Mednar was also searched for unpublished studies and grey literature. Tables of themes, terms, and associated strategies are presented alongside a thematic analysis of the results. 62 articles were included. These were 20 quantitative studies, 14 systematic reviews, 10 qualitative studies, five review papers, four book chapters, four mixed methods studies, two dissertations, two meta-analyses and one scoping review and systematic review. Most of the included articles referenced self-help ( n = 51), followed by self-management ( n = 17) and self-care ( n = 6). A total of 12 themes were identified from a reflexive thematic analysis of descriptions (and associated strategies) of self-management, self-help, or self-care in included texts. This scoping review provides clarity on the similarities and differences between how these concepts are discussed, and the strategies which are associated with each of these concepts in the relevant literature. Implications for policy and intervention development for adolescents’ self-management, self-help, and self-care of their mental health are discussed. There is considerable overlap in both the ways in which these concepts are described, and the strategies or approaches proposed in relation to them, supporting previous research suggesting these strategies should be grouped under a single term, such as “self or community approaches.” More research is needed for self-management, self-help, and self-care amongst marginalized groups as these adolescents may have the highest unmet need for mental health support.
Full-text available
Background Obsessive-compulsive disorder (OCD) is a debilitating mental health disorder that can substantially impact upon quality of life and everyday functioning. Guidelines recommend pharmacological and psychological treatments, using a cognitive behaviour therapy approach (CBT) including exposure and response prevention, but access has generally been poor. Low intensity psychological interventions have been advocated. The evidence base for these interventions is emerging but there is a paucity of information regarding practitioners’ perceptions and experiences of supporting individuals with OCD using this approach. Methods Qualitative interviews were undertaken with psychological wellbeing practitioners (PWPs) (n = 20) delivering low intensity psychological interventions for adults with OCD within the context of a large pragmatic effectiveness trial. Interviews explored the feasibility and acceptability of delivering two interventions; guided self-help and supported computerised cognitive behaviour therapy (cCBT), within Improving Access to Psychological Therapies (IAPT) services in NHS Trusts. Interviews were recorded with consent, transcribed and analysed using thematic analysis. ResultsPWPs acknowledged the benefits of low intensity psychological interventions for individuals experiencing OCD symptoms on an individual and population level. Offering low intensity support provided was perceived to have the opportunity to overcome existing service barriers to access treatment, improve patient choice and flexibility. Professional and service relevant issues were also recognised including self-beliefs about supporting people with OCD and personal training needs. Challenges to implementation were recognised in relation to practitioner resistance and intervention delivery technical complications. Conclusions This study has provided insight into the implementation of new low intensity approaches to the management of OCD within existing mental health services. Benefits from a practitioner, service and patient perspective are identified and potential challenges highlighted. Trial registrationCurrent Controlled Trials: ISRCTN73535163. Date of registration: 5 April 2011.
Full-text available
Objective: Cognitive-behavioral therapy (CBT) is the first-line treatment for young people with obsessive-compulsive disorder (OCD), but most patients do not have access to this treatment. Thus, innovative ways to increase the accessibility of CBT are needed. The objective of this trial was to evaluate the efficacy of therapist-guided internet-based CBT (ICBT) for adolescents with OCD. Method: Sixty-seven adolescents (12-17 years old) with OCD were randomly assigned to a 12-week clinician- and parent-supported ICBT program (BiP OCD) or a waitlist condition. The primary outcome was the Children Yale-Brown Obsessive Compulsive Scale (CY-BOCS) administered by blinded assessors before and after the intervention. All patients were followed up 3 months after the intervention. Results: In intention-to-treat analyses, BiP OCD was superior to waitlist on the CY-BOCS (time-by-group interaction, B = -4.53, z = -3.74, p < .001; Cohen's d = 0.69; 95% CI 0.19-1.18) and on most secondary outcome measurements. Patients randomized to BiP OCD also showed further improvement from post-treatment to 3-month follow-up, with a within-group pretreatment to follow-up effect size (Cohen's d) equal to 1.68 (95% CI 1.00-2.36). Patient satisfaction with BiP OCD was high. There were no relevant adverse events. Average clinician support time was 17.5 minutes per patient per week. Conclusion: Therapist-guided ICBT is a promising low-intensity intervention for adolescents with OCD and has the potential to increase access to CBT. It might be particularly useful in a stepped-care approach, in which a large proportion of patients with moderately severe OCD could first be offered ICBT, thus freeing limited resources for more complex cases. Clinical trial registration information-Internet-Delivered CBT for Adolescents With OCD: A Randomized Controlled Study (BiPOCD);; NCT02191631.
Full-text available
Introduction Childhood Obsessive-Compulsive Disorder (OCD) is a prevalent and impairing condition that can be effectively treated with Cognitive Behavior Therapy (CBT). However, a majority of children and adolescents do not have access to CBT. Internet-delivered CBT (ICBT) has been suggested as a way to increase availability to effective psychological treatments. Yet, the research on ICBT in children and adolescents has been lagging behind significantly both when it comes to quantitative as well as qualitative studies. The aim of the current study was to describe the experience of ICBT in adolescents with OCD. Method Eight adolescents with OCD that had received ICBT were interviewed with qualitative methodology regarding their experiences of the intervention. Data was summarized into thematic categories. Results Two overarching themes were identified, autonomy and support, each consisting of three primary themes (self-efficacy, flexibility, secure self-disclosure and clinician support, parental support, identification/normalization, respectively). Conclusions The experiential hierarchical model that was identified in this study is, in part, transferrable to previous research. In addition, it highlights the need of further study of important process variables of ICBT in young patient populations.
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Background: The development and evaluation of Internet-delivered cognitive behavioral therapy (iCBT) interventions provides a potential solution for current limitations in the acceptability, availability, and accessibility of mental health care for young people with obsessive-compulsive disorder (OCD). Preliminary results support the effectiveness of therapist-assisted iCBT for young people with OCD; however, no previous studies have examined the effectiveness of completely self-guided iCBT for OCD in young people. Objective: We aimed to conduct a preliminary evaluation of the effectiveness of the OCD? Not Me! program for reducing OCD-related psychopathology in young people (12-18 years). This program is an eight-stage, completely self-guided iCBT treatment for OCD, which is based on exposure and response prevention. Methods: These data were early and preliminary results of a longer study in which an open trial design is being used to evaluate the effectiveness of the OCD? Not Me! Program: Participants were required to have at least subclinical levels of OCD to be offered the online program. Participants with moderate-high suicide/self-harm risk or symptoms of eating disorder or psychosis were not offered the program. OCD symptoms and severity were measured at pre- and posttest, and at the beginning of each stage of the program. Data was analyzed using generalized linear mixed models. Results: A total of 334 people were screened for inclusion in the study, with 132 participants aged 12 to 18 years providing data for the final analysis. Participants showed significant reductions in OCD symptoms (P<.001) and severity (P<.001) between pre- and posttest. Conclusions: These preliminary results suggest that fully automated iCBT holds promise as a way of increasing access to treatment for young people with OCD; however, further research needs to be conducted to replicate the results and to determine the feasibility of the program. Trial registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12613000152729; (Archived by WebCite at 6iD7EDFqH).
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The objective of the study was to examine the optimal Children’s Yale-Brown Obsessive–Compulsive Scale (CY-BOCS) percent reduction and raw cutoffs for predicting cognitive-behavioral treatment (CBT) response among children and adolescents with obsessive–compulsive disorder (OCD). The sample consisted of children and adolescents with OCD (N = 241) participating in the first step of the Nordic long-term OCD treatment study and receiving 14 weekly sessions of CBT in the form of exposure and response prevention. Evaluations were conducted pre- and post-treatment, included the CY-BOCS, Clinical Global Impressions—severity/improvement. The results showed that the most efficient CY-BOCS cutoffs were 35 % reduction for treatment response, 55 % reduction for remission, and a post-treatment CY-BOCS raw total score of 11 for treatment remission. Overall, our results diverge from previous research on pediatric OCD with more conservative cutoffs (higher cutoff reduction for response and remission, and lower raw score for remission). Further research on optimal cutoffs is needed.
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Background Low intensity interventions based on cognitive-behavioral therapy (CBT) such as computerized therapy or guided self-help can offer effective and accessible care for mild to moderate mental health problems. However, critics argue that by reducing therapist input and the level of experience of the professionals delivering therapy, low intensity interventions deprive users of critical ‘active ingredients’. Thus, while demand management arguments support the use of low intensity interventions for OCD, their integration into existing mental health services remains incomplete. Studies of user views of low intensity interventions can offer valuable insights to define their role and optimize their implementation in practice. Methods Qualitative interviews (n = 36) in adults with OCD explored user perspectives on the initiation, continuation and acceptability of two low intensity CBT interventions: guided self-help (6 h of professional support) and computerized CBT (1 h of professional support), delivered within the context of a large pragmatic effectiveness trial (ISRCTN73535163). Results While uptake was relatively high, continued engagement with the low intensity interventions was complex, with the perceived limitations of self-help materials impacting on users’ willingness to continue therapy. The addition of professional support provided an acceptable compromise between the relative benefits of self-help and the need for professional input. However, individual differences were evident in the extent to which this compromise was considered necessary and acceptable. The need for some professional contact to manage expectations and personalize therapy materials was amplified in users with OCD, given the unique features of the disorder. However, individual differences were again evident regarding the perceived value of face-to-face support. Conclusions Overall the findings demonstrate the need for flexibility in the provision of low intensity interventions for OCD, responsive to user preferences, as these preferences impact directly on engagement with therapy and perceptions of effectiveness.
This article presents an analysis of challenges and considerations when developing digital mental health innovations. Recommendations include collaborative working between clinicians, researchers, industry and service users in order to successfully navigate challenges and to ensure e-therapies are engaging, acceptable, evidence based, scalable and sustainable.
The study presented was conducted to analyze the effects of obsessive-compulsive symptoms on patients' quality of life and the costs incurred by patients and society for the treatment of obsessive-compulsive disorder (OCD). To accomplish this, a detailed 410-item questionnaire of psychosocial function and economic cost was sent to every fourth member of the Obsessive Compulsive Foundation. Of the 2,670 members who received the survey, 701 (26.9%) returned it. Outcome measures included symptomatology, course of illness, impact of illness on psychosocial and other functioning, effects of diagnosis and treatment, and economic consequences. The demographics of this group were similar to those in smaller treatment-seeking clinical samples, but not necessarily to OCD sufferers within the US population as a whole. More than half of the patients reported moderate to severe interference in family relationships, socializing, and ability to study or work, secondary to OCD symptoms. A 10.2-year gap was observed between the onset of symptoms and the first attempt to seek professional help, and a 17.2-year gap was observed between the onset of symptoms and receipt of effective treatment. Specific treatments, such as serotonin reuptake inhibitors and behavior therapy, showed greater symptom improvement, and significantly reduced the total annual fees incurred by OCD patients when compared with nonspecific treatments. Our study results indicate that OCD has a profound effect on psychosocial functioning and quality of life. Large direct costs for OCD and even larger indirect costs due to lost wages and underemployment were found. Greater awareness of OCD among practitioners may result in earlier diagnosis and more appropriate and cost-effective treatments.
Effective treatment strategies exist for obsessive-compulsive disorder (OCD), however, many individuals do not receive professional help. Media-delivered self-help is increasingly sought to narrow the treatment gap. Previous studies included personal contact with a clinician, making it difficult to delineate the specific effect of the medium. We developed "myMCT" for OCD, a (meta-)cognitive manual for self-application. We conducted a randomized-controlled trial with 128 OCD participants receiving myMCT versus psychoeducation, adopting low-threshold recruitment approaches without any face-to-face contact. Diagnoses were verified with telephone interviews paralleling online surveys at pre, post (4 weeks) and follow-up (6 months). Participants benefited significantly from both interventions. MyMCT showed stronger reduction of OCD symptoms on Y-BOCS total score (p=.023, η2partial=.04), obsessions (p=.002, η2partial=.07), depression (BDI: p=.022, η2partial=.04), and cognitive biases (OBQ: p=.016, η2partial=.05) after 4 weeks. After 6 months, individuals with myMCT showed decreased levels of cognitive biases (OBQ). The current study provides further evidence that myMCT is a promising approach to target OCD-related psychopathology as mere self-help. Although effect sizes were below those usually found in (therapist-)guided self-help, myMCT could be of value for the large subgroup of individuals without treatment.