Content area
Purpose
This paper aims to understand the lived experience of people with intellectual disability of their anxiety and of being co-design partners in developing a multi-component approach to the management of anxiety.
Design/methodology/approach
The development of an anxiety manual and programme was part of a service development which allowed existing and established psychological therapies to be adapted for people with intellectual disability. A qualitative approach was used to better understand the views of people who experienced anxiety on a daily basis. The feedback generated was used to make modifications to the manuals and the anxiety management programme.
Findings
The study has demonstrated the value of involving people with intellectual disability in the co-production of an anxiety management programme. Additional findings identified the real-life challenges and experiences of the impact anxiety has on people’s lives.
Originality/value
To our knowledge, this is the first study to involve people with intellectual disability in developing an anxiety management programme as co-production partners. This paper underlines the value of understanding and involving people as co-production partners in developing clinical interventions.
It is estimated that there are 1.2 million people with an intellectual disability in England, with approximately 30–50% suffering from mental health problems. Among this cohort, anxiety-related difficulties range from 7% to 40% (Reid et al., 2011; Smiley, 2005). However, this figure is thought to be higher with underreporting and lack of effective diagnosis impacting on prevalence rates (Cooray and Bakala, 2005). A comparative study identified higher rates of mental illness in people with intellectual disability than the general population (Cooper et al., 2007), with (Deb and Bright, 2001) identifying higher rates of anxiety in older adults. Experience of anxiety-related difficulties is found to have increased over the life course of a person with an intellectual disability, with exposure to negative life events being a predictive factor for psychological trauma and resultant anxiety disorders (Tsakanikos et al., 2007; Wigham et al., 2014).
Anxiety-related conditions are increasingly prevalent among people with intellectual disability (Bowring et al., 2019; Cooper et al., 2015). However, there is evidence to suggest a greater prevalence of anxiety in people with autism and intellectual disability (Bakken et al., 2010). Furthermore, the co-morbid association between autism and intellectual disability results in a greater propensity for psychiatric disorders (Hill and Furniss, 2006). The presence of anxiety in people with intellectual disability and autism has been found to have a greater association with specific phobias, social anxiety and obsessive-compulsive disorder (Helverschou and Martinsen, 2011).
Despite this high prevalence, there is limited evidence for the effectiveness and sustainability of any current treatment interventions (Bailey and Andrews, 2003; Dagnan et al., 2018; National Institute for Health and Care Excellence, 2016). A meta-analysis examining the effectiveness of psychological therapies for people with mild to moderate intellectual disabilities found limited evidence of efficacy within studies (Koslowski et al., 2016). Research on modified cognitive behaviour therapy (CBT) for anxiety-related problems in people with intellectual disability has demonstrated limitations in its effectiveness and sustainability of therapeutic impact (Hassiotis et al., 2013; Unwin et al., 2016). CBT has been found to have some beneficial effects, but small sample sizes and a lack of scientific rigor have limited study outcomes (Dagnan et al., 2018). Moreover, it was noted that alternate approaches to psychological interventions are needed to improve clinical practices.
Studies have shown that anxiety has a significant negative impact on the daily lives of people with an intellectual disability (Ali et al., 2015; Cooper et al., 2007). The impact on those people with more significant levels of intellectual disability and limited verbal communication can often manifest in behaviours that challenge (Bowring et al., 2019; Challenging Behaviour Foundation, 2021). The health impact is often compounded by people requiring high doses of medications to manage symptoms of anxiety (Axmon et al., 2019; Deb and Deb, 2015). This is in contrast with national campaigns to “stop over medicating people with a learning disability and/or autism” and NICE’s recommended guidance (National Institute for Health and Care Excellence, 2016; NHS England, 2016).
NICE clinical guidelines suggest psychological therapies be adapted for people with intellectual disability and identify CBT, relaxation and graded exposure as recommended treatments for anxiety (National Institute for Health and Care Excellence, 2016). Additional psychological therapies, such as mindfulness, are effective approaches, provided that people with intellectual disability are given adequate support and guidance to practise the requisite skills (Idusohan-Moizer et al., 2015; Robertson et al., 2011). More recently, a systematic review examined acceptance and commitment therapy for the treatment of anxiety in people with intellectual disability. This review noted the potential for adapted acceptance and commitment therapy to be incorporated into psychological treatment programmes (Byrne and O’Mahony, 2020).
Most therapies for the treatment of anxiety have used a single-based therapeutic model, with variable effectiveness (Koslowski et al., 2016; Unwin et al., 2016). The limited evidence of the long-term sustainability of psychological approaches underlines the need for alternate methods for the treatment of anxiety-related issues. Non-pharmacological approaches are needed to deliver a range of effective therapies to support people in improving their self-management skills. Further exploration of psychological approaches should be developed to understand what works (or not) for clinical practice (National Institute for Health and Care Excellence, 2016).
Aims and objectives
The study’s aim was to make improvements to the treatment of anxiety in people with intellectual disability. Co-producing a treatment programme with those who have lived experience was essential in the development of a multi-component anxiety management programme (M CAMP-ID). Key project objectives are as follows:
to work with an engagement group, refining and adapting psychological therapies to an anxiety management programme manual for people with ID;
to understand the lived experience of anxiety from people with intellectual disability;
to work alongside an engagement group, refining and adapting psychological therapies to develop an anxiety management programme manual;
to co-design an accessible user guide to allow engagement from people with more severe intellectual disability; and
to explore the thoughts and experiences of participants in co-producing the manual.
Method
The study was conducted in an NHS community intellectual disability service. The service provides specialist care and treatment to people with intellectual disability, their families and carers. The service offers a range of multi-disciplinary specialist interventions and support to meet the healthcare needs.
A total of four people consented to participate in the project. All participants had a mild intellectual disability, with an equal number of male and female participants. Two participants had a diagnosis of autism. All participants experienced difficulty with anxiety-related issues on a daily basis.
To understand the lived experience of anxiety, participants’ focus groups were used to collect information about how anxiety impacted their lives. Content analysis was used to evaluate the feedback from participants and understand areas of the manual which required further modification. The suggested changes included the structure of sessions, changes to the graded exposure approach and using alternative images and terminology. The initial feedback formed the basis of development of a M CAMP-ID. By using an iterative approach within the analysis, the feedback obtained was used to identify areas for further refinement of the programme’s content and accessible user guide. Feedback from participants was continually analysed throughout the development process using the information provided to make modifications to the manual and user guide, as shown in the details of the feedback questions.
The feedback questions are detailed below.
Are the sessions easy to follow?
Are the words used in the manual and user guide easy to follow and understand?
What do you think of the images and pictures in the user manual?
Can you think of any changes we could make to help people better understand the information?
Do any of the sessions need changing, or is there any information you do not like?
Do both the user and clinician guide work together?
Can you think of any other changes which are needed?
Discussion groups
Two separate discussion groups were completed using open-ended questions. This approach was used to gain awareness of the individual challenges participants experienced in their everyday lives. We explored how anxiety impacted individuals to gain a better understanding of people’s self-management strategies. Insight into the participants’ lived experience provided additional insight into the effectiveness of current clinical interventions.
Additional feedback on the initial draft M CAMP-ID programme was obtained with the prior agreement of all participants. The discussion group sessions were used to capture participants’ thoughts on the proposed session structure, content and accompanying user workbook and programme manual.
Developing the multi-component anxiety management programme
The adaptation of several psychological therapies for the development of the anxiety management manual project used a systematic approach by Hwang(2009). The adaptation follows a five-stage process (Box 1.).
Box 1.
Phase 1: Generating knowledge and collaborating with stakeholders
Phase 2: Integrating generated information with theory and empirical and clinical knowledge
Phase 3: Review of culturally adapted clinical intervention by stakeholders and further revision
Phase 4: Testing the culturally adapted intervention
Phase 5: Synthesizing stakeholder feedback and finalizing the culturally adapted intervention
A co-production approach involving people who use healthcare services to design and support developments to treatment interventions (NHS England, 2017) was used. Pivotal to improving healthcare services and treatment interventions is involvement from people with a lived experience (Health Quality Improvement Partnership, 2017). People with lived experience are ideally placed to advise on the type of support and interventions which are required to make improvements in people’s lives (Involve, 2018). An essential element to this approach are the voices of people with a disability in the creation and delivery of healthcare services (Fenney et al., 2022).
To support involvement and co-production processes, information on the key underlying psychological principles for the sessions was provided to participants. The information enabled discussion, and a clear explanation of the key psychological principles was provided to participants.
A project task and finish group was established consisting of the four participants who provided feedback from the focus group sessions to support the initial development of the programme manual. The draft manual was provided to participants, who were subsequently asked to consider treatment principles, optimum session arrangement, presentation sessions format, accompanying materials and the length of each session. Feedback questionnaires were provided in advance of the development sessions to enable facilitators to support participants in preparing feedback.
The anxiety management programme consists of eight therapy sessions, which use a range of psychological approaches to achieve an individual’s therapy goal. The therapy sessions apply a key focus on the identified area of need, with each session revisiting pre-agreed goals.
The M CAMP-ID uses a goal-based approach to therapy. The goals are used to focus on what the patient wants to achieve themselves, surrounding their anxiety. Training for clinicians using this approach allows adaptations to be made to make the treatment more accessible for people with both mild and moderate intellectual disabilities. The M CAMP-ID programme is integrative in terms of psychological models and therapeutic modalities and uses a holistic approach to the promotion of wellbeing.
The programme uses graded exposure to systematically desensitise participants to increasing aspects of an anxiety-causing situation or problem. This process is completed in parallel with multiple psychological therapy sessions to support the exposure exercises by developing self-management skills during each of the sessions. A range of strategies, including mindfulness exercises and acceptance and commitment therapy, are used to bring about change to thinking processes. Dialectical behaviour therapy sessions focus on teaching people to live in the moment and develop real-life coping strategies to deal with stress and anxiety. Relaxation, wellbeing and lifestyle sessions provide a framework for patients to work towards supporting the self-management of their anxiety and stress.
The inclusion of an accessible user guide connects with the clinician guide to support the facilitation of the programme. All sessions begin with a recap of the previous session to maintain continuity and identify further learning prior to progressing onto the next session. Movement through the anxiety management programme aims to maintain clinical focus and achieve the patient’s identified goal. All sessions begin and end with an exercise to develop breathing techniques (Table 1).
Table 1 provides an overview of the session format with a brief description of the programme content.
Analysis
Focus group interview notes were transcribed and coded into themes using six-phase thematic analysis (Braun and Clarke, 2006). Emergent themes were identified following DA, SJ and SLJ reading and re-reading the transcript several times to become familiar with the content and meaning. The second phase generated initial coding, during which DA, SJ and SLJ independently identified codes from within the data from participants’ words and descriptions. The third phase involved searching for themes through analysis by combining related codes to identify overarching themes. Comparisons and differences in proposed codes were frequently discussed between DA, SJ and SLJ until final agreement was reached. In the fourth phase, DA and SLJ examined specific quotations, which were subsequently grouped into themes. The fifth phase involved naming themes and providing a narrative. In addition, DA, SJ and SLJ determined if any of the themes required a sub-theme. In the final phase, DA and SLJ gathered selected themes and quotes to illustrate participants’ feelings and experiences.
Results
Co-design of the multi-component anxiety management programme
The project allowed collaboration as an iterative process, with feedback used to make adaptations and modifications to the structure and length of sessions. All participants provided feedback with a general consensus on the content of the manual and user guide. The adaptation of different psychology therapies provided an opportunity for participants’ lived experiences to be captured and incorporated into the therapy sessions.
By dovetailing the user guide and clinician manual, it was felt the programme would be more inclusive for people with a more severe intellectual disability. Challenges were experienced in aligning the clinician manual with the user guide and maintaining uniformity within sessions. Co-design partners provided feedback to allow for several modifications to be made to the user guide. A practical solution was to use different coloured shapes to code each exercise to maintain unity. It was felt that this approach provided an additional opportunity to maintain engagement in each session and limit disruption to therapeutic delivery.
There was agreement from participants on the structure and content of the anxiety management manual and programme resources. Co-production partners underlined the need for continual self-management strategies to run throughout the programme to allow for clinician led instruction to be integrated into the manual. Additionally, setting a therapy goal and formulating a graded exposure plan should run concurrently through sessions. The aim of this approach is to help people develop self-management skills to overcome anxiety-provoking situations which may impact their lives. Encouraging the practice of anxiety management strategies between sessions was a key feature of participant feedback. Furthermore, it was felt that different levels of support would be required for the person to achieve their goal and promote graded exposure activities. Therefore, involvement from families and carers will be important, particularly in the early stages of the treatment programme.
Discussion group sessions
Discussion group sessions provided an opportunity to understand the effect anxiety has on participants’ lives from a lived experience perspective. Group sessions provided insight into areas of clinical focus and using a multi-method approach for the treatment of anxiety. Three key themes were identified.
Physical and psychological impact of anxiety
Three of the participants explained thinking about situations which have triggered anxiety and recognising how this is often not helpful. One participant elaborated by explaining feeling overwhelmed when using public transport. The experience of physical symptoms caused the person to vomit due to high anxiety levels. This led to the participant worrying they would always be sick when faced with the same situation. Another participant identified feeling faint when in a similar situation and emphasised how they avoided using public transport. Both participants highlighted how a lack of alternate transportation significantly affected their social networks and leisure activities.
All participants reported the physical impact anxiety had on their body, with feelings often resulting in panic and fear. A repeated theme was the feeling of being trapped and unable to escape a situation. One participant felt suffocated when travelling by train and experienced difficulty breathing due to a heightened state of anxiety. There was recognition from participants that the physical impact of anxiety created a barrier to accessing social and recreational activities, often leading to increased isolation and loneliness.
Management of anxiety in social situations
All participants identified close family members as supportive and as an essential part of their daily lives. Participants emphasised their reliance on family members to feel confident to engage in social situations. There was a general feeling that members of the public were not always sympathetic to their difficulties. One participant reported that people often stared and made derogatory comments or offered limited support.
Three participants identified crowded areas as a specific problem that created difficulties for a variety of activities, such as shopping or attending the gym. A participant detailed a situation when attending a sporting event and experienced an episode of heightened anxiety due to crowd noises. This resulted in the participant having an “extreme panic attack” and requiring support from a family member. This situation resulted in the participant feeling increasingly reliant on family members to provide support to attend subsequent sporting events, thus impacting their level of independence.
All participants considered their social anxiety to weigh heavily on their families and carers. They described feeling the “eyes of others” watching them in social situations. Participants discussed creating solutions which could be personalised. These included methods of alerting members of the public to increasing levels of anxiety by creating a simple, step-by-step instruction card which could guide people in providing support.
Participants described hospital environments as “scary places” and reflected on healthcare situations that were anxiety-provoking. There was consensus between participants the most provoking situations involved medical interventions or attending GP surgery.
In contrast, participants highlighted the level of anxiety and stress experienced when visiting loved ones in the hospital. Participants talked about their families and medical professionals not always providing them with information about a family member’s condition. Participants considered that this paternalistic outlook focused on providing reassurance rather than information about the family member’s medical condition. There was a general consensus among participants that being provided with information would be beneficial in alleviating their worry and better understanding a prognosis.
Coping strategies
In discussing individual coping strategies used to manage anxiety symptoms, participants highlighted a range of self-management strategies. Key strategies included using digital media to access resources to practise anxiety management techniques. However, some participants reported they often needed direction to access and effectively use relaxation resources. All participants described physical exercise as an effective method for relieving stress and providing some level of independence.
Distraction techniques were frequently used by all participants. Participants reported listening to music effective in self-control of symptoms and particularly helpful when approaching crowded areas or travelling on public transport. Furthermore, participants considered tasks and hobbies beneficial in reducing anxiety on a general level.
The participants underlined the need for continued development of their individual self-management skills. All participants reported the co-production group had provided the opportunity to examine and gain greater insight into their own specific needs.
Discussion
To our knowledge, this is the first UK study which has used a qualitative approach to understand the lived experience of people with intellectual disability and involved these people in developing an intervention for the treatment of anxiety in clinical practice. There are several findings identified through this study.
The themes which emerged from the discussion groups provided a greater understanding of how anxiety impacts people’s lives. This understanding illustrated the daily challenges faced by people with intellectual disability and some strategies used by them to overcome anxiety-provoking situations. The participants detailed their daily struggles in managing their psychological distress and the interconnected relationship with physical symptoms of anxiety.
Social peer support between participant members within the group allowed for the exchange and sharing of experiences. The emotional support participants demonstrated towards each other during the group session enabled identification with others. In addition, it provided opportunities for peer support when participants were self-critical in reporting a difficult, anxiety-provoking experience. The shared learning from the discussion groups was incorporated into recommended strategies to promote and develop self-management skills. A key strategy identified in the discussion groups was the value of physical activity and digital resources to enhance the development of self-management skills.
This information provided a key contribution to making further developments to the anxiety management programme. The feedback provided by the co-production partners generated ideas and allowed changes to the session manuals. In addition, this process enabled improved alignment of the manual guides and additional resource development. The feedback group sessions underlined the importance of using a range of interactive strategies to engage people with varying abilities and maintain motivation and interest.
The inclusion of an accessible user guide aims to support participant engagement in the programme and provide clear guidance throughout the sessions. The inclusion of practice exercises and graded exposure within sessions promoted the development of self-management strategies. Although involvement from families and carers to support exposure exercises between sessions will be important in the initial stages of the programme.
A potential benefit of the anxiety management programme is increased exposure to life events and the potential to reduce a paternalistic outlook. This could lead to increased autonomy, improved self-esteem and a higher quality of life for people with an intellectual disability.
These findings highlight the potential clinical implications. However, caution is needed, as the anxiety management programme needs to be tested in clinical practice with people who have an intellectual disability and anxiety.
There were few strengths to this study. The study used co-production in partnership with people with intellectual disability in the development of a treatment programme. Furthermore, it took into account insights gained from a lived experience perspective and the effect anxiety has on people’s lives. The authors felt that this allowed for the treatment programme to be more person-centred and relevant for people with intellectual disability. It also meant that there was a likelihood of greater acceptability and engagement with such a treatment programme when used in the management of anxiety in people with an intellectual disability. However, the study had some limitations. Due to the nature of the co-production work needed, the study could only involve a small number of people with lived experience who had agreed to participate in the discussion groups. In addition, feedback was provided by people with a mild intellectual disability and might not represent that of people with a more severe intellectual disability.
It is important to test the manual in clinical practice. A future study will provide an opportunity to examine the multi-component programme and manuals in a clinical environment. A key objective will be to obtain further understanding from people with intellectual disabilities and make recommended changes or adaptations. A clinical trial will aim to evaluate the comparative differences of a multi-model approach as a psychological treatment for anxiety in people with intellectual disability. Examination of any improvements in mood, behaviour and quality of life will help evaluate the effectiveness of the programme.
A potential challenge could be the commitment to practising and completing steps of exposure between sessions. People with a more severe intellectual disability will require additional support during and between sessions. The manual is designed to be modified to individual needs and form the basis for a person’s anxiety management plan. Therefore, involvement within the anxiety management programme from families and carers is paramount.
Ethical Information: The study was approved through the Trust’s research ethics approval process. The data was extracted and anonymised from the standard electronic patient record system used in routine clinical care. According to the Health Research Authority algorithm (see http://www.hra-decisiontools.org.uk/research/), this study was not defined as research and therefore did not require submission to the Integrated Research Application System.
The authors thank the co-production partners for their valuable feedback in developing the programme. Additionally, the authors thank Clinical Psychologists Drs Ceri Woodrow and Jonathan Williams for their support in the adaptation process.
Overview of the session format with a brief description of the programme content
| Session 1: about this workbook | Overview of programme and support individual to identify therapy goal. Person-centred planning and commitment to programme |
|---|---|
| Session 2: healthy mind and body | Activity-based session using multimedia aimed at promoting healthy lifestyle changes to promote well-being |
| Session 3: what is anxiety? | Interactive activities to support understanding and recognition of anxiety. Focus on feelings and behaviours, using body mapping exercise |
| Session 4: graded exposure | Systematic desensitisation planning and development of individual plan |
| Session 5: talking about anxiety | Developing an understanding of how to express an anxious self to others using key words, pictures and body language exercises |
| Session 6: working on my anxiety skills | Practical-based mindfulness session exploring ways to implement this throughout the day as part of a routine |
| Session 7: learning new skills | Scenario-based session – exercises using anxiety-provoking scenarios of a range of commonly presented environments/situations that can cause anxiety |
| Session 8: review of my anxiety management plan | Programme overview/recap and review of intervention goals. Plan to repeat sessions as required |
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