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Introduction
In 1993 Lindsay and colleagues published a case study describing the application of Beck’s model of cognitive-behavioral therapy (CBT) to people with intellectual disabilities (ID) and depression (Lindsay et al., 1993). Clinical and research experience has progressed considerably since then, and there have now been a number of edited reference texts (Kroese et al., 1997; Taylor et al., 2013) and systematic reviews (e.g., Sturmey, 2004; Willner, 2005; Vereenooghe and Langdon, 2013) on CBT and other psychotherapies for people with ID. For example, a recent meta-analysis of good-quality studies of psychotherapy for people with ID included 14 papers and found both a moderate between-group effect size, that individual therapy was more efficacious than group therapy, and that CBT was effective for both anger and depression (Vereenooghe and Langdon, 2013). However, the authors suggested that clinical trials need to more accurately report details of design and research process and use larger numbers of participants.
In the context of an increasing interest and sophistication of research and clinical practice in CBT with people with ID, this chapter will first consider approaches to CBT and then describe aspects of therapy that may be adapted to meet the needs of people with ID. Finally, the chapter will discuss new developments in intervention and possible future directions of clinical and research activity in the field of CBT for people with ID.
What is CBT?
There is not a single, simple identified form of therapy that is “cognitive-behavioral therapy.” In categorizing cognitive therapies, Dagnan and Chadwick (1997) made an important distinction between models and interventions based on assumptions of cognitive deficit or cognitive distortion.
Models and interventions based on cognitive deficit assume that people with ID have either poor skills in cognitive mediation (e.g., they do not use self-talk/self-regulation in an efficient or skilled manner), or possibly do not use self-talk at all (Whitman, 1990). People with ID have poorer communication skills and vocabulary than people without ID and, as such, verbal processes involving self-regulation will be harder for this group (Nader-Grosbois, 2014). For example, Hebblethwaite et al. (2011) asked people with and without ID to talk about events, beliefs, and emotions around real-life examples of social conflict. People with ID offered fewer beliefs, were more evaluative, and found it harder to discuss different perspectives on the events they described. People without ID were more able to describe conflict events in more detail and with more inferential subtlety. This supports the argument that people with ID may be less effective in self-regulation and are more likely to require interventions that help them use the skills that they have more effectively, or to learn new skills to manage stress and problems in life.
Models of cognitive distortion assume that people do actively make meaning and that emotion and behaviors are cognitively mediated, but that the cognitions are in some way distorted or unhelpful and so are associated with unhelpful emotional responses (Dagnan and Chadwick, 1997). There is now evidence that negative beliefs are strongly associated with mental ill-health in people with ID (e.g., Dagnan and Sandhu, 1999). These assumptions are associated with therapies developed by clinicians and researchers such as Beck et al. (1979).
There is no assumption that intervention approaches associated with either deficit or distortion models are better. However, it is important to recognize the theoretical basis of the intervention that is being used in order to be able to link the intervention with assessment of the strengths and needs of the people with ID (Dagnan, 2008) and to enable further systematic development of the intervention approach.
The challenges of using CBT with people with ID
The following case study illustrates some of the complexities in using CBT with people with ID:
John is a man with mild ID and a measured Full Scale IQ score of 66. He is the youngest of four children, is 38 years old, and lives with his mother and an older sister in a three-bedroomed house owned by his mother. John’s father died two years ago, and his mother has increasing difficulties with her mobility, is becoming more forgetful, and has a number of health issues, which have not been discussed with John as his mother, “does not want him to be upset.” John has a hemiplegia, his communication is affected by his physical disability, and he can get frustrated if people do not understand him. John was teased and bullied at school and as a young man and most of his recent social networks revolved around his father’s allotment and going with his father to support his local football team. Currently John does not leave his house very often, he has lost weight, has a poor appetite, and tends to be awake into the early hours of the morning, watching television and looking at football magazines, and then sleeps to early afternoon. John has been telling his family that he is ill, that he has headaches, stomach aches, and is often tired. John is tearful at times and during these periods makes statements that suggest he is uncertain about his future, saying things such as, “No one wants to live with me,” and “There are bad things happening.”
In considering how to use CBT to intervene in John’s case there are three areas that we will need to take into account that are pertinent to John as a person with an iID:
The social context of John’s life. He has very limited life experiences and very limited social networks, and associated developmental opportunities. Therefore, we will have to consider the opportunities available in John’s life to practice and build new skills and ways of solving problems. We will have to consider John’s disabled appearance and physical difficulties with communication and recognize that this may change the way people interact with him and change their expectations of him in interactions.
The psychological impact of John’s life experiences. John, like many people with ID, has experience of being bullied and, even within a very positive family context, has been treated as different by his family and their friends. Models of stigma suggest that people with ID may accept and “internalize” societies view of them as people with disability (Jahoda et al., 2006). Over time this may affect core self-evaluations (Dagnan and Waring, 2004) and may affect clinical processes such as formation of a therapeutic alliance (Dagnan et al., 2007).
The real impact of John’s intellectual disabilities. Although John is identified as having mild ID, he is likely to have difficulties with some of the intellectual demands of CBT. This might include difficulty in identifying emotions and describing his physiological experience, and it might include difficulty in using some of the core understanding of the relationship between cognition, emotion, and behavior in CBT (Dagnan et al., 2007).
Social context
People with ID may be more likely to experience a range of developmental and social factors associated with psychological distress and mental ill-health than people without ID. For example, Kiddle and Dagnan (2011) review the evidence on developmental vulnerability for depression and link this to literature from the ID field to demonstrate that certain risk factors may be more present in the lives of adolescents with ID. For example, they note that adolescence is a time when the importance of peer relationships is coupled with greater independence from the parents, which can result in conflict between parent and child and which is, in turn, associated with depression (Sheeber et al., 1997). Achieving greater independence from parents is a very complex process for young people with ID and independence is often not fully achieved (Hollins and Sinason, 2000).
The general importance of social support in buffering the effects of negative life events is well established (Cohen, 2004) and is known to be equally important for people with ID (Reiss and Benson, 1985). However, relationships can also be a significant source of distress, and people with ID frequently experience discrimination, bullying, and harassment (Sin et al., 2010). “Social strain” has been found to be strongly associated with depression (Lunsky and Benson, 2001), and problems with social networks have been found to be a predictor of depression in this population (McGillivray and McCabe, 2007).
It is important that the social environment and its developmental implications are taken into account in formulating psychological distress for people with ID. It is also important the limitations in many people’s social networks and other features of their lives are taken into account in developing cognitive-behavioral therapy; the implications for this are discussed in detail by Jahoda et al. (2009a). For example, they discuss the clinical issues in having carers take part in some of the therapy sessions with people with ID. They suggest that carers can support the use of homework, but also identify that there may be positive effects for the carer in observing the clients participation in aspects of therapy (Rose et al., 2005).
The psychological impact of life experiences
People with ID are constructed by society as different, this difference has a negative valence and, thus, they can be identified as “stigmatized” (Jahoda et al., 1988). Stigmatization has a substantial impact upon the way people with ID and their families are treated (Green et al., 2005). When people recognize that they are treated negatively and differently over long periods of time, this affects their self-image and self-evaluations (Dagnan and Sandhu, 1999; Jahoda et al., 2006). Negative core self-evaluations then influence social processes such as self-esteem and social comparison (Dagnan and Waring, 2004). These cognitive processes have been shown to be related to mental ill-health in people with ID (Dagnan and Sandhu, 1999; Dagnan and Jahoda, 2006; Hedley and Young, 2006).
A number of authors have considered how the impact of negative social construction may affect the delivery of cognitive therapy for people with ID (Jahoda et al., 2006, 2009a). For example, Jahoda et al. (2009a) discuss how a history of stigmatized experience may affect how people with ID may enter therapy, leading to processes such as negative expectations of contact with professionals or a strong tendency to acquiesce. It may be particularly important with this client group to use behavioral experimentation to challenge the client’s view of themselves as a person without power in their environment, or it may be possible to use cognitive methods that use the attributional processes outlined by authors such as Corrigan and Watson (2002) to reduce the impact of stigma on self-concept. Dagnan et al. (2013) discuss how a stigmatized history may affect the formation of a therapeutic alliance. They highlight a number of activities that can serve to build the therapeutic alliance based upon an understanding of stigma. For example, they suggest that it will be important to highlight clients’ strengths and positive relationships, rather than merely focusing on problem areas; it will also be important to focus on each individual achievement within therapy, and processes, such as the collaborative use of agendas (Lindsay, 1999), may create a sense of shared success, which will strengthen the alliance.
The real impact of intellectual disabilities
People with ID are likely to have difficulties with some aspects of CBT. Dagnan and colleagues have discussed the development of an assessment approach that identifies key areas of understanding that are necessary to be able to fully take part in therapy (Dagnan et al., 2007). From a consideration of basic CBT processes they suggest that:
1. A person should be able to accurately distinguish events (the activating event), thoughts (the belief), and emotions (the consequence).
2. The person should be able to identify that certain events are associated with emotional experience. It is important to recognize that not all people with mild ID immediately associate the way they feel with what is going on around them in their lives (Reed and Clements, 1989).
3. The person should be able to recognize that the emotional consequences are closely linked to beliefs. This is often one of the more complex concepts for people with ID engaging in CBT.
Dagnan and Chadwick (1997) describe the assessment process identified above in detail, and Dagnan et al. (2009) describe a detailed analysis of the types of response that people with ID may give in assessments of understanding of cognitive mediation, and discuss how such assessments may guide decisions on intervention type or may suggest the need for pretherapy work with the client. From such assessments it may be possible to suggest key areas of understanding that can be developed prior to entering therapy. For example, Bruce et al. (2010) describe a training approach that develops the understanding that people with ID have of core concepts associated with CBT.
The adaptations made to therapy to enable engagement by people with ID are broad (Whitehouse et al., 2006). Dagnan et al. (2007) describe a range of adaptations that take into account the ID of this client group. They identify the potential for shorter and more frequent sessions, the need to maintain a high level of engagement through active and “vivid” methods, such as role play, use of focused activities, and taking therapy to the environments where the issues being addressed happen. They further identify the need for accessible materials, repetition, and particular attention to breaks in therapy.
An important and developing area in the application of therapy with people with ID is that of research into therapy process. This area of research serves both to confirm that the expected processes of change are indeed present for people with ID, but also serves to identify further how adaptation in therapeutic technique might be needed. Non-specific therapy processes have been discussed for CBT with people with ID. For example, Kilbane and Jahoda (2011) discuss an important non-specific factor in therapy, that of “therapy expectation,” and describe the development of the “Therapy Expectation Measure.” They suggest that people with ID may be able to understand therapy as an outcome and goal-focused process, but that client and carer perceptions of therapy may be different. In further exploring these differences in perspective, Pert et al. (2008) report on the experience of CBT for people with ID, in particular it was notable that participants valued the therapeutic relationship. Stenfert Kroese et al. (2014) reported that carers have little knowledge of CBT and do not feel included in the process. Jahoda et al. (2009b) used interaction analysis of 30 transcribed therapy sessions to study whether it was possible to achieve an equal balance of power in therapy with people with ID. Their analysis suggested that therapists provided structure to therapy through asking questions whilst the clients provided the content of the interactions. This paper suggests that it is possible to maintain a collaborative relationship in CBT with people with ID.
Development of intervention
In the past 10 years intervention has developed in two areas. Firstly, there are an ongoing descriptions of single case studies of the application of cognitive therapy to specific presentations such as obsessive-compulsive disorder (Willner and Goodey, 2006; Pence et al., 2011), post-traumatic stress disorder (Kroese and Thomas, 2006; Mevissen and de Jongh, 2010), psychosis (Barrowcliff, 2008), and pain (McManus et al., 2014). Secondly, there have been a small number of controlled trials of CBT interventions structures (McGillivray et al., 2008; Hassiotis et al., 2011; Willner et al., 2013). Although some of these trials are still at the level of feasibility studies, it is notable that the field is moving towards randomized controlled trials, as the absence of such definitive trials has been identified as a significant problem in this field (Willner, 2005; Vereenooghe and Langdon, 2013). The development of definitive trials of CBT presents a number of challenges in design and implementation (Bhaumik et al., 2011); however, the systematic development of manualized approaches will make fully adapted materials and approaches widely available to clinicians working in this area.
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