Co-design and development of a multi-component anxiety management programme for people with an intellectual disability

© [Copyright © 2022, Emerald Publishing Limited]. This AAM is provided for your own personal use only. It may not be used for resale, reprinting, systematic distribution, emailing, or for any other commercial purpose without the permission of the publisher.Purpose – This paper aims to understand the lived experience of people with intellectual disability ofvtheir 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 coproduction 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

Exploring self-harm risk vulnerabilities in autism using the ‘thinking patterns profiling model’

From Springer Nature via Jisc Publications RouterHistory: received 2022-11-21, registration 2023-02-23, accepted 2023-02-23, epub 2023-03-20, online 2023-03-20, collection 2023-12Acknowledgements: This project was conducted through the Structured Operational Research and Training Initiative (SORT IT), a global partnership led by the Special Programme for Research and Training in Tropical Diseases at the World Health Organization. The training is based on a course developed jointly by the International Union Against Tuberculosis and Lung Disease (The Union) and Medécins sans Frontières. This specific SORT IT program was run by Cheshire and Wirral Partnership (CWP) NHS Foundation Trust as part of routine work. Mentorship and the coordination/facilitation of these SORT IT workshops were provided through the CWP NHS Foundation Trust; The Centre for Operational Research, The Union, Paris, France; The Institute of Medicine, University of Chester, UK; and College of Life and Environmental Science, University of Exeter. The authors would like to acknowledge the families who attended the autism diagnostic assessment profiling service, and to thank the experts by experience who shared their insight, contributed to interpretation of the study findings, and reviewed final versions of the manuscript. Experts by experience included Josef de la Moitie and Kevin Carrell who were happy to be named. The authors would also like to thank Professor Taj Nathan (Director of Research and Effectiveness), Dr Fiona Pender (Strategic Director), Anne Casey (Head of Clinical Services), Dr Ian Davidson (Consultant Psychiatrist and Royal College of Psychiatrists Autism Champion), and Heather Pearce (Advanced Specialist Speech and Language Therapist) all at Cheshire and Wirral Partnership NHS Foundation Trust. Finally, thank you to David Tollerfield for permission to use the ‘Thinking Patterns Profiling Model’ digital innovations as part of the diagnostic assessment profiling service.Publication status: PublishedBackground: Autism has been linked to higher rates of self-harm. Research is yet to establish the reason for the association between autism and self-harm as a distress response. Methods: Using the ‘thinking patterns profiling model’, this study explored characteristics associated with self-harm risk in 100 autistic young people. Secondary analysis of routinely collected clinical data was conducted using odds ratios and t-tests. Results: We found the prevalence of reported self-harm risk was 48%. Young people with reported self-harm risks had significantly lower regulation skills (p ≤ 0.01) and lower social flexibility skills (p ≤ 0.01) compared to those without reported self-harm risk. For those described as impulsive, mean scores on the following skills were significantly lower: perspective-taking skills (p ≤ 0.01), flexible thinking for creative problem-solving (p ≤ 0.05) and sensory tolerating (p ≤ 0.05). There was no relationship between reported self-harm risk and adverse childhood experiences. Conclusions: These findings suggest that profiling tools such as ‘Thinking Patterns Profiling Model’ can be used to explore unique patterns of vulnerability and resilience related to self-harm risk in autism. The findings suggest that autistic thinking patterns might interplay with other factors (e.g. impulsivity). Patterns are based on each person’s profile across four core skill-sets: regulation, flexible thinking, sensory coherence, and social perspective-taking. These findings motivate a person-centred and profile-informed approach to planning support and adjustments. Further studies are needed to confirm the ways in which mechanisms typically involved in self-harm risk, may interact with core cognitive and affective differences found in autism

Do demographic, and clinical characteristics influence meeting NICE quality standards for young people transitioning to adult intellectual disability services?

Purpose This study aims to evaluate the quality of transition from child and adolescent services to adult intellectual disability services, using the relevant National Institute for Health and Care Excellence (NICE) standard (QS140). In addition, this study also identifies any differences in transition quality between those young people with intellectual disability with and without autism. Design/methodology/approach Using routinely collected clinical data, this study identifies demographic and clinical characteristics of, and contextual complexities experienced by, young people in transition between 2017 and 2020. Compliance with the quality standard was assessed by applying dedicated search terms to the records. Findings The study highlighted poor recording of data with only 22% of 306 eligible cases having sufficient data recorded to determine compliance with the NICE quality standard. Available data indicated poor compliance with the standard. Child and adolescent mental health services, generally, did not record mental health co-morbidities. Compliance with three out of the five quality statements was higher for autistic young people, but this only reached statistical significance for one of those statements (i.e. having a named worker, p = 0.02). Research limitations/implications Missing data included basic clinical characteristics such as the level of intellectual disability and the presence of autism. This required adult services to duplicate assessment procedures that potentially delayed clinical outcomes. This study highlights that poor compliance may reflect inaccurate recording that needs addressing through training and introduction of shared protocols. Originality/value To the best of the authors’ knowledge, this is the first study to examine the transition process between children’s and adults’ intellectual disability health services using NICE quality standard 140

Co-production of post-diagnostic psychosocial interventions with carers of people with intellectual disability and dementia

Copyright © 2020, Emerald Publishing LimitedThis paper aims to underline the importance of using a collaborative approach when designing and adapting a post diagnostic psychosocial intervention of cognitive stimulation therapy (CST) for people with intellectual disability and dementia. As part of a service improvement, a manual of CST was adapted, for delivery in clinical practice. A qualitative co-production method allowed participants with a lived experience to provide regular feedback relating to the development of the adapted CST manual and intervention programme. This feedback was used to make continual development changes to the CST manual. The study demonstrated co-production with those who provide care is valuable in adapting psychosocial therapies for people with an intellectual disability and dementia. Additional findings identified the need for carer education in ageing, dementia care, and the physical health needs for older people with intellectual disability. This is the first study that has used a co-production approach with families and carers in adapting a group therapy programme for people with an intellectual disability. This paper underlines the need for post diagnostic clinical interventions for people with dementia and those who provide care

Care givers experiences of caring for people with intellectual disability and dementia: a qualitative evidence synthesis

© [insert the copyright line of the published article]. This AAM is provided for your own personal use only. It may not be used for resale, reprinting, systematic distribution, emailing, or for any other commercial purpose without the permission of the publisherPurpose A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose was to develop an understanding of the complexities, challenges, and support available to meet the needs of an ageing population. Design/methodology/approach A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges care givers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships, and trends to enhance the awareness of gaps in care provision. Findings There were six main domains identified from the available literature which included; 1) caring for older adults with intellectual disability Gaps in knowledge and skills 2) limitation in knowledge of ageing and dementia Early identification of dementia and associated difficulties 3) coping strategies Managing behaviour, 4) identifying dementia coping, 5) burden of care managing changes in behaviour, 6) Impact on confidence burden of care. Originality. This is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia

Dementia education and training for caregivers supporting older people with intellectual disability: a scoping review of the literature

‘© [insert the copyright line of the published article]. This AAM is provided for your own personal use only. It may not be used for resale, reprinting, systematic distribution, emailing, or for any other commercial purpose without the permission of the publisher’Education and training is vital in improving age related care provisions . However, a lack of awareness and understanding of dementia could be a factor in meeting the age related needs of people. This article examines the impact dementia education has on caregivers’ confidence to provide person centred care for people with intellectual disability and identifies additional training needs. A systematic scoping review was completed using PRISMA-ScR to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability. A search of five electronic databases, identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers confidence in meeting the physical and psychological needs of older adults with intellectual disability. This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person centred dementia care

Intellectual disability and autism in adults influence psychological treatments for mental health conditions

Mental health conditions are often underdiagnosed in adults with intellectual disability and do not always receive psychological interventions as recommended by the National Institute for Health and Care Excellent guidelines. To realise the national UK programme’s aim of stopping overuse of medications in people with intellectual disability, it is important that these individuals have access to appropriate non-pharmacological interventions. We examined the relationship between an individual’s level of intellectual disability and presence or absence of autism with access to relevant non-pharmacological interventions from specialist community intellectual disability services. A cross-sectional study of adults accessing four specialist intellectual disability services in North West England in 2019. There was high prevalence of mental health co-morbidity, even higher for autistic adults. However, a relatively small percentage of the study population were receiving psychological interventions. The most frequent non-pharmacological intervention was positive behaviour support plan, irrespective of comorbid mental illnesses. Not having access to psychological interventions for the treatment of mental illness could result in poor health outcomes and increasing health inequalities. The study highlights the need for developing psychological interventions particularly for those with moderate to severe intellectual disability and for those with associated autism. This large sample study examined the relationship between intellectual disability level and presence of autism with accessing psychological interventions