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8/19/2019 0_CBT for Adults With Intellectual Disabilities
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Research in Developmental Disabilities 51–52 (2016) 60–75
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Review article
Effectiveness of cognitive behavioural therapy (CBT)
programmes for anxiety or depression in adults with
intellectual disabilities: A review of the literature
Gemma Unwin a,∗, Ioanna Tsimopoulou a, Biza Stenfert Kroese a, Sabiha Azmi b
a School of Psychology, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK b North East London NHS Foundation Trust, Good Mayes Hospital, Barley Lane, London, UK
a r t i c l e i n f o
Article history:
Received 21 April 2015
Received in revised form 8 December 2015
Accepted 14 December 2015
Available online 22 January 2016
Keywords:
CBT
Psychotherapy
Anxiety
Depression
Intellectual disabilitiesIntellectual and developmental disabilities
a b s t r a c t
Relatively little is known about the application of cognitive behavioural therapy (CBT) to
people withintellectualdisabilities(ID). Thisreviewsought to synthesise availableevidence
on the effectiveness of CBT for anxiety or depression to assess the current level of evidence
and make recommendations for future research. A comprehensive systematic literature
search was conducted to identify qualitative and quantitative studies. Robust criteria were
applied to select papers that were relevant to the review. Included papers were subject to
quality appraisal. Eleven out of the 223 studies considered met our inclusion criteria and
were included in the review in which CBT was used with participants with ID and anxiety
(n = 3), depression (n = 4) or a mixed clinical presentation (n = 4). There remains a paucity
of evidence of effectiveness, however, the studies indicate that CBT is feasible and well-
tolerated and may be effective in reducing symptoms of depression among adults with
mild ID. Qualitative data reflect a positive perception of CBT amongst clients and carers.
Further research is required to investigate the components of CBT, suitability for CBT, and
requisite skills for CBT, which uses valid, sensitive and more holistic outcome measures.
© 2015 Elsevier Ltd. All rights reserved.
Contents
1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61
2. Materials and methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
3.1. Characteristics of the studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 3
3.2. Characteristics of the interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
3.3. Quality appraisal and methodological limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
3.4. Effectiveness of CBT for anxiety and depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 683.4.1. Anxiety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
3.4.2. Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68
3.4.3. Qualitative data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
4. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
Conflicts of interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
∗ Corresponding author.
E-mail address: [email protected] (G. Unwin).
http://dx.doi.org/10.1016/j.ridd.2015.12.010
0891-4222/© 2015 Elsevier Ltd. All rights reserved.
http://localhost/var/www/apps/conversion/tmp/scratch_3/dx.doi.org/10.1016/j.ridd.2015.12.010http://www.sciencedirect.com/science/journal/08914222mailto:[email protected]://localhost/var/www/apps/conversion/tmp/scratch_3/dx.doi.org/10.1016/j.ridd.2015.12.010http://localhost/var/www/apps/conversion/tmp/scratch_3/dx.doi.org/10.1016/j.ridd.2015.12.010mailto:[email protected]://crossmark.crossref.org/dialog/?doi=10.1016/j.ridd.2015.12.010&domain=pdfhttp://www.sciencedirect.com/science/journal/08914222http://localhost/var/www/apps/conversion/tmp/scratch_3/dx.doi.org/10.1016/j.ridd.2015.12.010
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G. Unwin et al. / Research in Developmental Disabilities 51–52 (2016) 60–75 61
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
Appendix A. Example search terms for Embase, Medline and PsycInfo searches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
Appendix B. Quality appraisal of the studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
R e f e r e n c e s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 3
1. Introduction
Mental health problems are at least as common among people with intellectual disabilities (ID) as in the gen-
eral population (Cooper, Smiley, Morrison, Williamson, & Allan, 2007; Cooray & Bakala, 2005; Deb, Thomas, & Bright,
2001; King, DeAntonio, McCracken, Forness, & Ackerland, 1994; Moss et al., 2000; Reid, Smiley, & Cooper, 2011;
Tsiouris, Kim, Brown, & Cohen, 2011) with anxiety and depression most common (Azam, Sinai, & Hassiotis, 2009;
Reid et al., 2011; Richards et al., 2001; Smiley, 2005; Tsiouris et al., 2011). Reported prevalence rates for emo-
tional disorders among people with ID vary, but are likely to be at least consistent with the general population
rates of 4–8% (Lindsay et al., 2015). The prevalence of these conditions is currently unknown due to difficulties in
diagnosing mental illness in people with ID, especially those with severe and profound ID, limited communication
skills, limited abilities to self-report psychological experiences, and co-morbid autism spectrum disorder (Deb et al.,
2001a; Hemmings, Deb, Chaplin, Hardy, & Mukherjee, 2013; Holden & Gitlesen, 2004a; Kannabiran & McCarthy, 2009;
Matson & Shoemaker, 2009; Sturmey, Reed, & Corbett, 1991) which may lead to under-diagnosis and under-reporting.
Authors have implicated ‘diagnostic/behavioural overshadowing’ whereby presenting problems of challenging behaviour
could be indicative of an underlying mental illness, but serve to mask the condition, with clinicians (especially non-
specialists) giving excessive attention to behavioural symptoms or the co-morbid ID rather than investigating mental
health further (Deb, Thomas, & Bright, 2001; Hemmings et al., 2013; Lowry, 1997; Reiss & Szyszko, 1983; Tsiouris,
2001).
Cognitive behavioural therapy (CBT) is recommended for the treatment of anxiety or depressive disorders (American
Psychiatric Association, APA, 2004, 2010; National Institute for Health and Clinical Excellence, NICE, 2009, 2011). However,
the application of CBT for emotional disorders among people with ID is not considered in these guidelines which focus on the
general population. Recent guidance published in UK has considered a range of psychological and behavioural approaches
for behaviour that challenges among people with ID (NICE, 2015).
The Department of Health in the UK recommends that ‘Improving Access to Psychological Therapies’ (IAPT) services
should provide effective psychological interventions to people with ID (Department of Health, 2009). However, there is
a lack of available evidence and access to psychological therapies remains limited. Lack of training of staff working in ID
services on mental health, and lack of knowledge and experience of working with people with ID among health work-
ers may contribute to this disparity (Stenfert Kroese & Rose, 2011). High rates of medication prescription have been
reported despite a paucity of evidence of effectiveness (Deb, Unwin, & Deb, 2015; Holden & Gitlesen, 2004b; Matson
et al., 2000; Matson, Bielecki, Mayville, & Matson, 2003; Tsiouris, Kim, Brown, Pettinger, & Cohen, 2013 ). The Winter-
bourne abuse scandal in the UK (in which residents of a hospital for people with ID were subject to abuse by staff resulting
in a television documentary and media and public outcry) highlighted the overuse of medication and institutional care.
It is therefore especially pertinent to improve access to psychological therapies by developing an evidence base. Psy-
chological interventions for people with ID have been dominated by the behavioural approach, however, mental health
clinicians are increasingly using a wide range of different therapies with this client group, including talking therapies. Fur-
thermore, due to the ‘mainstreaming agenda’ in the UK ( Joint Commissioning Panel for Mental Health, 2013), ID services are
being reconfigured nationally so that general adult mental health practitioners are increasingly likely to work with clients
with ID.
Growing evidence indicates that CBT is effective in managing psychological and emotional problems among individuals
with ID, with most evidence for anger management (Hamelin, Travis, & Sturmey, 2013; Hassiotis & Hall, 2008; Hassiotis
et al., 2009; Nicoll, Beail, & Saxon, 2013; Vereenooghe & Langdon, 2013; Willner, 2005; Willner et al., 2013). A recent
meta-analysis of psychological therapies for children and adults with ID identified 14 controlled trials published before
July 2012 (Vereenooghe & Langdon, 2013). The authors report a moderate between-group effect size for psychother-
apy across all studies. Three trials of CBT for depression were included which yielded a moderate to large effect size.
However, no controlled trials for anxiety were located. This synthesis provides important evidence of the effectiveness
of psychotherapy for people with ID. However, the study considered quantitative data only and imposed strict meth-
odological inclusion criteria. Given the infancy of research in the field, a detailed synthesis of all types of research is
warranted. Furthermore, synthesis of qualitative evidence may provide insights into processes that are most salient to
individuals and those around them engaging in therapy (MacMahon et al., 2014), and may provide indications of the effec-
tive components of interventions. The present review therefore aims to examine the evidence for the effectiveness of CBT
programmes for adults with ID and anxiety or depression, delivered by therapists or staff/carers, and including all study
designs and with a focus on process evaluation. Given the aforementioned difficulties in diagnosing these conditions, the
review will also consider CBT for those with anxiety or depressive symptoms and who may not have a diagnosis of emotional
disorder.
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257 records identified through database searching
223 records after duplicates removed
223 titles and abstracts screened 206 records excluded
17 full texts assessed for eligibility 10 records excluded
7 studies includedPlus 4 more studies from cross-
referencing
11 studies included
Fig. 1. Process of study selection.
2. Materials and methods
The following databases were searched using terms relating to ID, CBT, and anxiety/depression (Appendix A) up to 30th
July 2014: Embase, Ovid MEDLINE(R)In-Process and Other Non-IndexedCitations, and PsycINFO. After removal of duplicates,
the titles and abstracts of citations were scanned according to the inclusion criteria (see below) and irrelevant citations were
excluded. The review focused on adults with ID, therefore child studies were excluded. This reflects the division of services
for children and adults and the different nature to service provision. For example, child services are more likely to work in
a predominantly behavioural way and may work more with parents, caregivers and third parties.
The remaining full texts were examined to identify papers for inclusion in the review. One reviewer (IT) completed
the study selection process and two reviewers read the full texts and extracted data (IT and GU). The reference lists of
all included papers were checked for any further studies and a hand search was performed. After the final studies wereselected, information was extracted using a data extraction form. A quality criteria framework was used to appraise the
included studies (Kmet, Lee, & Cook, 2004). The framework is suitable for both qualitative and quantitative papers and can
accommodate a wide range of study designs. Different criteria are provided for quantitate and qualitative studies, and each
criterion is scored on a 3-point scale with the additional option of rating criteria as ‘not applicable’. The results of the quality
appraisal are given in Appendix B. A narrative synthesis is presented to extract key information relating to study design and
results relating to effectiveness.
The inclusion criteria were as follows:
• Participants: adults with ID and anxiety or depression (author defined)• Intervention: any therapeutic intervention adopting a cognitive-behavioural approach (author or reviewer defined)• Comparator: the study may or may not use a comparator• Outcomes: data relating to the effectiveness of the intervention including measures of intensity and/or frequency of
emotional or mental health problems and qualitative experiential data• Study: any qualitative or quantitative study.
3. Results
The database search identified 257 papers, of which seven papers were relevant for inclusion (see Fig. 1 f or the study
selection process). A further four papers were included from cross-referencing. Two studies were reported in a single paper
(Lindsay, 1999). Another two papers that met the inclusion criteria described four cases in detail (Lindsay, Howells, &
Pitcaithly, 1993; Lindsay, Neilson, & Lawrenson, 1997). However, these cases were also reported in the included paper
(Lindsay, 1999) and did not provide any additional detail so they were excluded to avoid duplicating data. Two papers report
qualitative data relating to the same group of participants who received the intervention: one paper from the perspective
of staff and professionals (Stenfert Kroese et al., 2014) and the other from the perspective of clients themselves (Pert et al.,
2013), these are regarded as a single study to provide a total of 11 studies included in the review. It is acknowledged that
they concern thesame intervention and may risk theduplication of data, but both areincluded as they provide novel insights
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into process issues and perspectives of effectiveness. Three out of the 11 studies that were reviewed were included in the
meta-analysis by Vereenooghe and Langdon (2013).
3.1. Characteristics of the studies
Tables 1–3 present an overview of the methodological characteristics and key findings of the studies relating to anxiety,
depression and mixed clinical presentations. The target for intervention was anxiety in three studies ( Lindsay, 1999: study
1; Douglass, Palmer, & O’Connor, 2007: study 2; Marwood & Hewitt, 2012: study 3), depression in four studies (Lindsay,1999: study 4; McCabe, McGillivray, & Newton, 2006: study 5; McGillivray, McCabe, & Kershaw, 2008: study 6; McGillivray &
Kershaw, 2015: study 7), and in four studies trans-diagnostic CBT was used for mixed clinical presentations, namely anxiety,
depression and/or anger (Ghafoori, Ratanasiripong, & Holladay, 2010: study 8; Hassiotis et al., 2013: study 9; Lindsay et al.,
2015: study 10; Stenfert Kroese et al., 2014: study 11a; Pert et al., 2013: study 11b); where possible, the results relating to
anxiety and depression are extrapolated from these studies.
A total of 265 participants with ID were included across the 11 studies (range: 5–70; n = 30 in studies on anxiety; n =156
in studies on depression; n = 79 in studies on mixed clinical presentations). Where the level of ID was reported, the majority
of participants had mild ID; no study reported including participants with severe ID. Participants presented with a range
of anxiety or depressive symptoms and not all had a diagnosis of anxiety or depressive disorder (sub-clinical emotional
disorder). Three studies did not provide any detail on assessment of symptoms for eligibility or diagnosis (1, 11a, 11b);
three studies stated that problems with mood significantly impacted on daily functioning (2), and required intervention (3,
8); three studies reported using the Beck Depression Inventory-II (BDI-II; Beck, Steer, & Brown, 1996) to screen for at least
minimal depression to include participants who were depressed as well as those manifesting depressive symptoms (5–7);and one used the Mini PAS-ADD (Moss & Brennan, 2002) to screen for psychiatric disorder after referral (9). In only one
study did all participants have a clinical diagnosis of emotional disorder (10).
The majority of studies (n = 10) employed a quantitative design, utilising a range of scales to measure outcome. Of these,
five had a control group which received no treatment, treatment as usual, or received the intervention after the initial
follow-up period (5–7, 9, 10); one of which employed a quasi-experimental design using a control group retrospectively
selected from the waiting list of a different service (10), and another compared three treatment modalities, each of which
was assigned to a different service provider (7). Eight studies had a follow-up period of 3–6 months (1, 4, 5–10). One study
used a qualitative interview design only (collecting data with staff members: 11a; and with people with ID: 11b) and a
further three studies used mixed methods (2, 3, 9).
3.2. Characteristics of the interventions
The number and content of CBT sessions varied across the studies. The mean number of sessions was 11.43 (range: 5–47sessions) with each session lasting a mean 86.6 min (data were not available for studies 1 and 10). Sixstudies used group CBT
(2, 3, 5–8) and four stated that the CBT was manualised (6, 7, 9, 10). In all but one study the CBT was delivered by a qualified
therapist. In study 6, CBT was delivered by agency staff who had a degree in psychology or sociology and/or a specialist
qualification in working with people with ID, and who received training over two days in depression and the CBT approach
and ongoing mentoring throughout the study. Involvement of family carers and support staff varied across the studies with
four studies stating that significant others were involved in some sessions to facilitate the client in completing homework
and developing and maintaining coping strategies (2, 3, 9, 10).
3.3. Quality appraisal and methodological limitations
Tables B1 and B2 in Appendix B show the results of the quality appraisal process. Kmet et al. (2004) suggest that a liberal
cut-off for quality could be around 55% of the total possible score. Three studies scored below this threshold, one mixed
methods and two quantitative (1, 2, 4). Two studies comprised brief case reports based on clinical experience and presented
little methodological information (1, 4). The qualitative component of the mixed methods evaluation was not reported in
detail and did not appear to employ robust qualitative methods (2). All the studies were retained for Tables 1–3, but those
not reaching the cut-off are not considered in the narrative.
The methodological quality of the studies varied. Sample sizes were generally small with a mean of 24 participants
per study. No controlled trial was located for anxiety-focussed CBT. Of the controlled trials, some comparison groups were
recruited from different services (7), were retrospectively selected from existing caseloads (10) and were quasi-independent
(5). No study undertook a power calculation however, study 9 aimed to use their data to determine sample size for a larger
trial. Only study 9 stated that they used intention to treat analysis; attrition was reported in other studies however, those
data were removed from analysis. Where participants were followed-up, the period was generally short with a maximum of
six months. An independent researcher administered the outcome measures in two studies (6, 9), however, only one stated
that they were blind to the group allocation (9). In study 7 the assessments were administered by the therapist, this was also
implied in study 8. The final randomised study (5) did not describe blinding or the process of administering the outcome
measures.
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Only twostudies assessed fidelity to thetreatment approach (9, 11a/b). This is perhaps less importantfor non-manualised
interventions delivered by a qualified therapist, however, fidelity was not assessed for the agency-staff-delivered interven-
tion (6). There was little consideration of concomitant interventions including psychotropic medication and psychological
therapies. Only study 9 excluded those already in receipt of psychological treatment, however, medication and con-
tact with other members of the multi-disciplinary team were permitted. Antidepressant medications were recorded in
three studies (5, 6: 12% taking antidepressant medication at baseline, 7: 26% taking antidepressant medication at base-
line) and antianxiety medication in one study (3: remained stable for some time prior to the study). One study briefly
described separate outcomes for those taking antidepressant medication: all those taking antidepressants also showed
a decrease in depressive symptoms and negative automatic thoughts. However, no other consideration was given to
the effects of concomitant interventions. Potentially confounding life events were also not considered in the studies.
Study 8 included participants who were all experiencing transition from school to college. It is not clear when the
transition occurred in relation to therapy and outcome assessment, therefore, reported changes in this study may have
been due to a successful move or support from other professionals involved in the transition planning process, espe-
cially as people with ID are likely to experience increased anxiety during the transition period due to changes and
uncertainties.
The quality of the qualitative studies also varied; this may be more an issue with reporting than conduct of research.
Three papers reported qualitative data alongside quantitative data and therefore may not have had space to present
in-depth descriptions. For example, one study did not present quotes in support of the analysis and provided little infor-
mation on data collection (2). A further study reported very limited data on participants’ perception of the intervention
in the discussion section so was not considered as a qualitative study (5). The methodologies and recruitment strate-
gies employed in the qualitative studies were appropriate for the research questions. However, a significant number
of participants included in mixed-methods studies were not interviewed introducing potential for bias. Data collec-
tion methods were adequately described in most studies. Two studies used Interpretative Phenomenological Analysis
(IPA; 3, 11b) and thematic analysis (11a) and one used content analysis (9). One IPA study presents a ‘thin’ analy-
sis that does not reflect/interpret the experience of participants in their context with little description of the themes
(3). Two studies report auditing and cross-checking of the analysis (9, 11a/b). There was little evidence of reflexivity
in the papers in terms of the researchers’ role, relationships to the participants and potential bias. This is especially
problematic in two studies in which participants were interviewed by therapists involved in running the groups (2,
3). One study describes the use of the reflexive diary and supervision but does not discuss this in relation to the
results (3).
3.4. Effectiveness of CBT for anxiety and depression
3.4.1. AnxietyThree studies reported on anxiety-focused CBT (1, 2, 3). Studies 2 and 3 used Jacobson and Truax’s (1991) definition of
a clinically significant improvement (post-intervention scores that are more than two standard deviations above or below
the mean score of the pre-intervention sample). Twenty-nine and 25% of participants demonstrated a clinically significant
improvement.
The studies that included participants with mixed clinical presentations do not provide separate data for those with
anxiety, however, study 8 reports a significant reduction in scores on the anxiety subscale of their outcome mea-
sure that was not maintained at 4-month follow-up. Studies 9 and 10 report no between group treatment effects on
anxiety.
3.4.2. Depression
Seven studies provide quantitative data on the effectiveness of CBT on depressive symptoms (4–10) of which five were
controlled studies. Two studies using depression-focussed CBT report between group treatment effects on depressive symp-
tomsand negativeautomatic thoughts withresultsmaintained at 3-month follow-up(5, 6). However,in study5 deterioration
from post-test was evident among 58%, 68% and 37% for depressive symptoms, self-perception and negative automatic
thoughts, respectively. Similarly, the proportion of participants showing ‘substantial improvements’ reduced from 80% to
60% and 70% to 50% for depressive symptoms and negative automatic thoughts. Comparable treatment effects were reported
for cognitive-focused, behavioural-focused and CBT in study 7. However, only the CBT group showed a significant reduc-
tion in negative-automatic thoughts at post-test. Seventy-one per-cent, 47% and 53% were classed as ‘recovered’ in the
behavioural-focussed, cognitive-focused and CBT groups, respectively. At six month follow-up, the recovery rates were 47%,
53%, and 53% suggesting that behavioural focused therapy may provide short-term clinical gains, however, the cognitive
component may play a role in longer term outcomes.
Studies 8–10 utilised trans-diagnostic CBT. Significant repeated measures effects are reported in study 8, but these were
not maintained at 4-month follow-up. Studies 9 and 10 report non-significant treatment effects. However, the groups in
study 10 were not comparable at baseline with higher scores for depression among the treatment group. In study 9 those
who screened positive for the presence of depressive disorder showed a 3.21 point reduction in depression scores compared
to 1.92 in the control arm suggesting a tendency for greater improvement.
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3.4.3. Qualitative data
Qualitative data and feedback from participants and carers indicate positiveeffects with a wide range of benefits reported.
In study 3, participants enjoyed the opportunity to talk about their feelings, go out of the home, and the sense of being
supported by their partners. Similarly, in study 5 participants were happy to have taken part and enjoyed the ability to
express themselves in a non-judgmental setting, feeling safe, and being respected by the others. For these participants the
most important features of the intervention were a safe and respectful environment; the opportunity to discuss problems
and gain feedback; information to take away and refer to later; and resources to develop a social network and become
more active. The participants also valued the feeling of social connectedness that the group-therapy format provided. In
study 9, the participants felt that therapy had helped them, although not all of their problems were solved. Eight par-
ticipants reported positive changes such as using the strategies they were taught, improved confidence and increased
calmness. Seven participants were positive about their therapist and the role of the support worker was viewed in a
positive way. Eight would recommend the therapy to others and would like to have further contact after the allocated
sessions.
One study used semi-structured interviews pre- and post-first phase of therapy to explore the views and experiences
of people with ID who had participated in the initial phases of CBT (11b) as well as the perspectives of their carers
(11a). Participants with ID said that talking in sessions was helpful in itself. Individuals reflected on positive changes
in themselves such as feeling happier, feeling more confident, understanding their problems better, increased patience
and being better able to express themselves (11b). The participants also reported changes in their broader lives such
as getting out more, being more sociable, and improved relationships. However, they also felt that changes were ‘frag-
ile’ and expressed cautious optimism about the outcomes of therapy, indicating an external locus of control requiring a
long-term supportive relationship to maintain progress. What was considered important and valued most was not the
technical aspects of CBT, but the sense of being listened to and taken care of by a therapist that treated them as equals.
The majority of staff participants also reported positive changes despite initial negative expectations of CBT (11a). Carer-
reported changes in participants in the second interview included improved mental health (for example, going out more,
socialising more, feeling more relaxed, feeling more confident, improved self-esteem, improved assertiveness) and cog-
nitive skills (for example, improved insight into problems and better coping skills). The two staff participants who did
not report positive changes suggested that the client seemed ‘stuck’ or demonstrated that they had learned some adap-
tive strategies but had not yet put them into practice. As with client participants, staff did not consider changes to be
permanent.
4. Discussion
The review located 11 studies that report on the effectiveness of CBT for anxiety or depression. Most of the studies have
methodological limitations including small sample sizes, few control groups, short-term follow-ups, and lack of treatment
fidelity assessment. Three RCTs were identified, two evaluated CBT for depression ( McCabe et al., 2006; McGillivray et al.,
2008) and one evaluated CBT for mixed clinical presentations (Hassiotis et al., 2013). No controlled trials were identified
for anxiety-focussed CBT. These trials report varying results with the trial by Hassiotis et al. (2013) reporting no overall
treatment effect. The other studies report significant treatment effects that were maintained at 3-month follow-up. These
discrepancies may be due to methodological differences, as discussed below.
There remains a paucity of evidence, but the studies indicate that CBT is feasible and well-tolerated, with some evidence
to indicate that CBT may be effective in reducing symptoms of depression, including negative automatic thoughts. There is
currently equivocal evidence for anxiety: studies demonstrated some positive results, however, these tended to be uncon-
trolled. Varying quantitative results were reported across the studies; the qualitative data were more consistent and reflect
a positive perception of treatment amongst clients and carers. Participants especially valued the space and time to discuss
their thoughts and feelings, the validation of their problems, and the formation or development of empathetic relationships
with therapists and, in the case of group therapy, other group members.
The studies all included mild-moderate ID only and all had eligibility criteria relating to verbal skills. In this way,
suitability for CBT was (informally) assessed. However, emotional disorder (anxiety, depression or mixed clinical pre-
sentation to include anxiety/depression and anger) was not always assessed and few studies imposed standardised,
objective criteria relating to a diagnosis or certain level of symptomatology. The inclusion of participants with sub-
clinical anxiety or depression may have resulted in floor effects on symptomatic outcome measures resulting in a lack
of sensitivity to detect change. Similarly, some studies used a trans-diagnostic approach which may have diluted the
effect of CBT, and it was difficult to differentiate between participants presenting with depression or anxiety. Hassiotis
et al. (2013) did not find a significant group effect in their feasibility RCT, however, a trend towards treatment effect
was observed for those who screened for clinical depression, but not for those with anxiety disorder. Smaller effect
sizes are reported in this study than those reported in other studies which report large effect sizes. The authors sug-
gest that effects may have been previously over-estimated, especially for anxiety. Alternatively, it may be argued that
a more targeted approach is needed for anxiety. Further research should investigate these issues, perhaps by compar-
ing trans-diagnostic and targeted approaches for both clinical and sub-clinical samples of people with depression and/or
anxiety.
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The lack of statistical significance reported in some studies may be due to studies being under powered due to small
sample sizes. None of the studies reported using a power calculation to determine sample size. Hassiotis et al. (2013) aimed
to use the results of their pilot RCT to determine the required sample size for a larger trial. Their results indicated that a
sample size of 162 would be needed which is very large in the field of ID research given the known difficulties recruiting
people with ID to RCTs.
The choice of outcome measures may have also contributed to the varying results. Some studies used measures that
were developed for the general population with or without adaptations. Sometimes the adaptations were not evaluated
and therefore may have invalidated the measure or affected its reliability. Hassiotis et al. (2013) used a quality of life
measure in their study, however, they could not report these results as it proved too complicated to be of use for this
population. The outcome measures may have lacked sensitivity to change or may have missed effects outside of changes
in symptomatology. It could be argued that the CBT seeks to improve recognition and normalising of symptoms so leads
to improved reporting by people with ID who may be particularly at risk of social desirability bias. There is a need to use
holistic, personally meaningful measures which address the client’s aims of therapy, rather than relying on symptomatic
measures which may not capture treatment effect. Furthermore, informant report of behavioural changes may be useful. A
recent trial of CBT for anger management found no significant effecton the primary outcome measure, namely a provocation
inventory, however, both client and staff ratings of anger significantly reduced as did client’s ratings on a more personally
meaningful anger measure (Willner et al., 2013). Furthermore, both clients and staff reported significant increases in coping
skills which were not quantitatively assessed in studies included in this review. In one study included in this review, all
participants reported a reduction in worries, an outcome that was not captured on the quantitative outcome measure
(Douglass et al., 2007).
In some studies, treatment effects were short-lived with some participants reverting to pre-treatment levels of dis-
tress within six months. This suggests that booster sessions may be required to sustain the positive impact of treatment.
Alternatively, deterioration could be an indication of clients having gained greater levels of insight and improved vocab-
ulary and therefore notice and report symptoms more readily. Further studies with longer follow-up periods are needed
to explore whether deterioration continued, and whether booster sessions would reverse this trend. Three of the studies
that included carers in the intervention reported effects that were maintained at follow-up (the other study that involved
carers failed to find a significant treatment effect; Hassiotis et al., 2013). It may therefore be important to involve carers to
maintain longer-term treatment effects. Previous research has foundthat engaging carers in psychological therapies benefits
clients, especially in reinforcing and sustaining the techniques learnt, transferring these skills to home life, and support-
ing with homework (Rose, Loftus, Flint, & Carey, 2005; Rose, West, & Clifford, 2000; Stimpson et al., 2013; Whitehouse,
Tudway, Look, & Stenfert Kroese, 2006). Furthermore, qualitative data from the studies indicates that people with ID value
the involvement of carers. However, confidentiality issues should be considered, and involvement should be optional.
Therefore, a systemic approach to include staff, professionals and family may be of particular value when working with
people with ID. Psychotherapists currently often work in this way ( Jones, 2014) however, future research needs to inves-
tigate different methods for involving care staff and the impact on outcome ( Jahoda et al., 2009; Stenfert Kroese et al.,
2014).
One study in this review successfully employed CBT for depression that was delivered by agency staff ( McGillivray et al.,
2008). The authors suggest that ‘train the trainer’ models may be a ‘cost-efficient, sustainable method of perpetuating the
impact of an intervention beyond the initial implementation’. In the largest RCTof CBT amongst people with ID, Willner et al.
(2013) trained care staff to act as lay therapists and deliver a manualised CBT programme for anger management. Willner
et al. found that this method of delivery was effective in reducing anger and improving use of coping strategies. Further
research could investigate whether this approach could be used for anxiety.
Care staff-delivered CBT in non-health/community settings may be a sustainable approach, especially for sub-clinical
emotional presentations, and may lead to improved generalizability of techniques learnt in therapy as clients participate in
the intervention in more natural settings and have more opportunity for contact with therapists. In this way, care staff-led
CBT could be used as preventative mental health promotion and may improve access to psychological therapies for peo-
ple who rarely have access to appropriate mental health services ( Stenfert Kroese et al., 2014). Research has shown that
providing mental health training to carers improves their ability to recognise mental health problems, improves knowl-
edge and attitudes, and confidence in response to service user’s difficulties ( Costello, Bouras, & Davis, 2007; Quigley,
Murray, Mckenzie, & Elliot, 2001; Tsiantis et al., 2004; Woodward & Halls, 2009; Zijlmans, Embregts, Gerits, Bosman, &
Derksen, 2011). Furthermore, one study in the review indicated that carers have very limited knowledge of CBT and may
hold sceptical views (Stenfert Kroese et al., 2014); involving carers in therapy either directly or indirectly may improve
perception.
The qualitative data indicates that CBT is valued by people with ID who found the process of talking in-depth about their
problems and being listened to beneficial and validating. The participants appreciated the collaborative approach of CBT.
Other research has demonstrated thatclients withID adopt a collaborative rather thanpassiverole in the therapeutic process,
contributing to the analytic process and dialogues ( Jahoda et al., 2009). The importance of the therapeutic relationship in
psychotherapy has been highlighted (Keijsers, Schaap, & Hoogduin, 2000; Lambert & Barley, 2001; Power, 2010) and the
studies in this review corroborate this for people with ID: participants engaged in individual and group therapy placed great
importance on a supportive therapeutic relationship. Therapists, working with people with ID, also view the therapeutic
relationships as fundamental to their work, influential on outcome and more important than theoretical approaches ( Jones,
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G. Unwin et al. / Research in Developmental Disabilities 51–52 (2016) 60–75 71
2014). Therapeutic relationships may have a greater impetus for people with ID than the general population due to limited
relationship experience ( Jones, 2014). Research has not yet investigated the association between quality of relationship and
outcome ( Jones & Donati, 2009). In the study by Hassiotis et al. (2013), CBT was delivered by qualified cognitive behavioural
therapists who receivedinductionto communication and engagement withpeople withID. The lackof experience of working
and engaging with people with ID may have affected the therapeutic relationship and ultimately the outcome. Therapists
working with clients with ID suggest that experience of working with this client group is important for the development of
a therapeutic relationship ( Jones, 2014).
Participants engaged in group therapy also valued the development of relationships with other group members, per-ceiving the group as a shared social experience and appreciating the opportunity for social interaction. Research on CBT
groups for anger management has also highlighted the importance of relationships in the therapeutic process both in
relation to the lay therapist as well as bonding and closeness with other group members and suggest that it is these
aspects that are more important than specific elements of the CBT intervention (MacMahon et al., 2014). Group ther-
apy may therefore be a more appropriate model for individuals with ID who often face social isolation, discrimination,
stigma and have few opportunities for developing close relationships. Few studies have investigated the experience
of and satisfaction with CBT amongst people with ID. Qualitative studies provide an insight into the therapeutic pro-
cess and further research is needed. The existing evidence highlights the importance of addressing social support and
social interactions to mitigate against the social isolation commonly experienced by people with ID and emotional
problems.
This review has some limitations: the search was not exhaustive so it is possible that some papers have been missed,
especially as we did not search the ‘grey’ literature. However, it is unlikely that any large-scale studies were omitted and
none were excludedon thebasisof language.A systematic review and meta-analysis of theliterature maybe beneficialin thefuture; at present, meta-analysis would be premature. More RCTs need to be conducted. The difficulties in conducting trials
with this population are known, however, they are essential to determine effectiveness of interventions to allow people
with ID to benefit from evidence-based healthcare. Future research should compare various credible treatment modalities
including psychological therapy and psychotropic medication. Further research with large sample sizes should also examine
whether there are prerequisite skills for CBT and whether comprehension of the cognitive model, for example, the ability
to differentiate between feelings, thoughts and behaviours, and verbal communication skills affects outcome. Most of the
studies in this review used multi-component interventions, including relaxation, behavioural and cognitive strategies. Only
McGillivray and Kershaw (2015) compared behavioural-, cognitive-focussed and CBT and found some evidence of longer
lasting effects with CBT. Further research should examine the mechanisms for change to look at the various components of
CBT as to which are most important.
Future research could:
• Compare trans-diagnostic and targeted CBT approaches for clinical and sub-clinical samples• Compare various treatment modalities, including group versus individual CBT, other therapies and medications• Examine the components of interventions and the mechanisms of change as well as evaluating treatment fidelity• Use more personally meaningful outcome measures, including measures adapted to individual aims from ther-
apy and more holistic measures beyond symptom measurement, as well as well as triangulation with informant
measures• Include longer follow-ups to explore whether deterioration continues, and whether booster sessions would reverse this
trend• Investigate care staff-led interventions for anxiety• Investigate whether there are prerequisite skills for CBT, and whether comprehension of the cognitive model affects
outcome• Investigate whether therapist competence and quality of therapeutic relationship affects outcome.
Therapists may consider:
• Involving carers to maintain longer-term effects, and to reinforce and sustain the techniques learnt, however, confiden-
tiality issues should be considered and involvement should be optional.• Taking a systemic approach to include staff, professionals and family. This may improve the perception of staff and carers.• Providing booster sessions to maintain effects.• Facilitating care staff-delivered CBT in non-health/community settings as a preventative approach.• The importance of the therapeutic relationship which may have a greater impetus for people with ID than the general
population due to limited relationship experience.• Group therapy which may be a more appropriate model for individuals with ID who often face social isolation, discrimi-
nation, stigma and have few opportunities for developing close relationships.• Addressing social support and contact as part of therapy.
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72 G. Unwin et al. / Research in Developmental Disabilities 51–52 (2016) 60–75
Conflicts of interest
There are no conflicts of interest.
Acknowledgements
Birmingham Community Healthcare NHS Trust funded the review. Ioanna Tsimopoulou was a Scholar of Alexander S.
Onassis Public Benefit Foundation at the time this study took place.
Appendix A. Example search terms for Embase, Medline and PsycInfo searches
1. Terms related to Learning Disabilities: learning disabilit*.mp. OR exp intellectual impairment/
OR *mental deficiency OR intellectual disabilit*.mp. OR mental* retard*.mp.
2. Terms related to mental health problems: anxiety.mp. OR anxiety/OR exp anxiety disorder/
OR depression.mp. OR exp depression/
3. Terms related to CBT: cognitive behav* therap*.mp. OR CBT.mp. OR cognitive behav* treatment
4. 1 AND 2 AND 3.
Appendix B. Quality appraisal of the studies
Table B1
Quality appraisal of quantitative studies.
Paper no. Criteria Summary
score
1 2 3 4 5 6 7 8 9 10 11 12 13 14 Total sum/total
possible sum
1 1 1 0 0 n/a n/a n/a 0 1 0 0 0 1 1 5/22 0.23
2 2 1 1 2 n/a n/a n/a 1 1 2 0 0 2 2 14/22 0.64
3 2 1 2 2 n/a n/a n/a 2 1 2 2 0 2 2 18/22 0.81
4 1 1 0 0 n/a n/a n/a 0 0 0 0 0 1 1 4/22 0.18
5 2 2 2 2 1 0 n/a 2 2 2 2 0 2 2 21/26 0.81
6 2 2 2 2 1 0 n/a 2 2 2 2 0 2 2 21/26 0.81
7 2 2 2 1 0 0 n/a 2 2 2 2 0 2 2 19/26 0.73
8 2 1 1 2 n/a n/a n/a 1 1 1 2 0 2 1 14/22 0.63
9 2 2 2 2 2 2 n/a 2 2 2 2 0 2 2 24/26 0.92
10 2 1 1 2 0 0 n/a 2 2 2 2 1 2 2 19/26 0.73
Summary
score
0.9 0.7 0.65 0.75 0.4 0.2 n/a 0.7 0.7 0.75 0.7 0.05 0.9 0.85
Criteria:
(1) Question/objective sufficiently described?
(2) Study design evident and appropriate?
(3) Method of subject/comparison group selection or source of information/input variables described and appropriate?
(4) Subject (and comparison group, if applicable) characteristics sufficiently described?
(5) If interventional and random allocation was possible, was it described?
(6) If interventional and blinding of investigators was possible, was it reported?
(7) If interventional and blinding of subjects was possible, was it reported?
(8) Outcome and (if applicable) exposure measure(s) well defined and robust t o measurement/misclassification bias? Means of assessment reported?
(9) Sample size appropriate?
(10) Analytic methods described/justified and appropriate?
(11) Some estimate of variance is reported in the main results?
(12) Controlled for confounding?
(13) Results reported in sufficient detail?
(14) Conclusions supported by the results?
Scoring: 2 = Yes; 1 = Partial; 0 = No; n/a, Not Applicable.
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G. Unwin et al. / Research in Developmental Disabilities 51–52 (2016) 60–75 73
Table B2
Quality appraisal of qualitative studies.
Paper no. Criteria Total sum/total
possible sum
Summary
score
1 2 3 4 5 6 7 8 9 10
2 2 2 2 1 1 1 0 0 1 0 10/20 0.50
3 2 2 2 2 2 2 2 2 2 2 20/20 1
9 2 2 2 2 2 2 2 2 2 1 19/20 0.9511a 2 2 2 2 2 2 2 2 2 2 20/20 1
11b 2 2 2 2 2 2 2 2 2 2 20/20 1
Summary score 1 1 1 0.9 0.9 0.9 0.8 0.8 0.9 0.7
Criteria:
(1) Question/objective sufficiently described?
(2) Study design evident and appropriate?
(3) Context for the study clear?
(4) Connection to a theoretical framework/wider body of knowledge?
(5) Sampling strategy described, relevant and justified?
(6) Data collection methods clearly described and systematic?
(7) Data analysis clearly described and systematic?
(8) Use of verification procedure(s) to establish credibility?
(9) Conclusions supported by the results?
(10) Reflexivity of the account?
Scoring: 2 = Yes; 1 = Partial; 0 = No; n/a, Not Applicable.
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