Title: Improving anxiety in people with mild to moderate intellectual disability: Developing and testing a novel, co-produced, mental imagery intervention.
Funder: Health Education England

Abstract: Background People with intellectual disabilities (ID) experience much higher rates of mental health disorders (including anxiety), than the general population. Despite this, developing effective psychological interventions has been woefully slow, and co-produced interventions remain unexplored. Adapting interventions, such as cognitive behavioural therapy (CBT), for people with ID has been partially successful. However, cognitive limitations of people with ID mean many cognitive techniques (e.g. identifying and altering core beliefs) remain inaccessible, as they require sophisticated metacognitive and verbal skills. Therefore psychological interventions in this population rely largely on behavioural exercises. Mental images can powerfully changing cognitions through visual, rather than verbal skills, potentially providing effective and accessible routes to amending emotions (anxiety) in this population. Research question Can a mental imagery intervention be co-produced to be acceptable to people with mild to moderate ID and reduce anxiety? Aims Understand experiences of mental imagery in people with ID Develop an acceptable mental imagery intervention, alongside people with ID, and stakeholders Test the intervention with several people with ID and anxiety, to understand experiences of using it and mechanisms for any changeEvaluate the co-production methodology Methods A 6 phase, qualitative, co-production methodology will be used. A group of people with ID (PPI group), and of stakeholders (carers, professionals and advocates) will be recruited through self-advocacy groups, day services, carers' groups, and professional bodies (e.g. Royal College of Speech and Language Therapists). A systematic literature review synthesises evidence of mental imagery in people with ID. Experiences of mental imagery in people with mild to moderate ID are explored through 8-10 individual semi-structured interviews, analysed using Interpretative Phenomenological Analysis (IPA). Focus groups (3 with PPI group and 2 with stakeholders) explore the acceptability of mental imagery interventions established in other populations. Discussions are analysed using Thematic Analysis. Results from phases 1-3 are collated, synthesised and presented in accessible formats ('information statements') at a workshop attended by PPI and stakeholder groups. Mixed groups of people with ID and stakeholders consider existing mental imagery interventions through information statements, burden and face validity. Groups agree on an appropriate mental imagery intervention. 2-4 people with ID experiencing anxiety use the intervention, which is evaluated using a single case experimental design, and semi-structured interviews. 10 individual interviews with PPI and stakeholder members explore experiences of engaging in the co-production methodology,analysed using Template Analysis. The quality of the co-production methodology is evaluated using a checklist (GRIPP2-LF).Anticipated Impact Improved understanding of mental imagery in people with ID (with implications for use in psychological interventions). A co-produced, mental imagery intervention for people with ID experiencing anxiety which is acceptable, accessible, has been tested out, and is ready for a feasibility trial. Understanding how people with ID can best be genuinely engaged and contribute meaningfully to developing healthcare interventions through co-production.Dissemination Implications for current clinical practice and developing future, evidence-based, psychological interventions will be widely disseminated. Stakeholder and PPI groups, and the researcher will disseminate results in accessible and meaningful formats, through publications, conference presentations, professional networks and a short film.

Lay abstract: AimsA new psychological intervention for people with mild to moderate intellectual disability (ID) experiencing anxiety will be developed alongside people with ID, their families, carers and professionals. This co-produced approach ensures the intervention is appropriate and accessible for people with ID. BackgroundDespite the urgent need for effective mental health interventions for people with ID, developing such treatments has been woefully neglected. People with ID comprise 2% of the population, and experience lifelong difficulties with their cognitive (thinking) skills, and ability to complete everyday tasks. ID affects people to varying degrees, and can be mild, moderate or severe. People with ID are 9-10 times more likely than someone without ID to be diagnosed with severe mental illness. Mental illnesses reduce quality of life, represent a huge cost to the person and their carers, and place additional demands on NHS and other services (e.g. social care). Some well-established psychological interventions have been adapted from mainstream services, but are not always accessible due to the cognitive limitations of people with ID. For example, cognitive behaviour therapy (CBT), relies on people thinking about their thoughts and having sufficient verbal skills to report these. Consequently, CBT interventions for people with ID often rely on behavioural techniques, somewhat ignoring potentially powerful, cognitive strategies. Using mental images (pictures in the head) provides an alternative to verbalising thoughts, and thus changing how people think and feel. This visual approach to accessing thoughts might be more accessible for people with ID. Mental imagery interventions include introducing positive images, and changing distressing images. However, we don't know how people with ID experience mental imagery, and if they can use them in psychological interventions. Design and methods used Six project phases examine experiences of mental imagery in people with ID, co-produce a mental imagery intervention alongside people with ID and stakeholders, and test this out. Co-producing a psychological intervention with people with ID is a new approach. A group of people with ID (the PPI group) and a stakeholder group (family members, carers and clinicians) will develop the project alongside the researcher, and this process will be evaluated. Phase 1: A literature search to see what we already know about mental imagery in people with ID. Phase 2: 8-10 individual interviews explore how people with ID experience mental imagery, which will be recorded and analysed. Phase 3: During focus groups (3 with people with ID and 2 with stakeholders) different types of mental imagery interventions are investigated and feedback gathered. Phase 4: A workshop with people with ID and stakeholders uses results of interviews and focus groups to design a mental imagery intervention. Phase 5: Between 2 and 4 people with ID and high anxiety will try the intervention (to see if it is easy to use, and reduces anxiety), and provide feedback on using it. Phase 6: 10 individual, semi-structured interviews evaluate experiences of PPI and stakeholder involvement in the co-production methodology, and the quality of this work.The package will then be ready for more formal evaluation in future work. Patient and Public Involvement People with ID (through self-advocacy groups), and stakeholders (family, carers, professionals) have been involved in developing the design of this project. Their regular input throughout the project will be essential will be essential to the co-production methodology. Dissemination Results will be shared with people with ID, families and carers, and professionals, through national (Mencap), regional (British Psychological Society regional groups) and local organisations (e.g. It's My Life self advocacy group). Media include journal articles, conference presentations, written and verbal feedback through regional networks, and a short film made by the PPI group.

Research activity codes: 6.6 PSYCHOLOGICAL AND BEHAVIOURAL
Health categories: MENTAL HEALTH