Recent Submissions

  • Easy read health information for people with intellectual disabilities: A linguistic discourse analysis. What happens to language when it is simplified?

    Buell, Susan; Pounds, Gabrina; Langdon, Peter; Bunning, Karen; Langdon, Peter; Learning Disabilities; Additional Professional Scientific and Technical Field; University of Dundee; University of East Anglia; Coventry and Warwickshire Partnership NHS Trust (Wiley, 2024-08-28)
    Introduction Easy Read health documents prepared for people with intellectual disabilities are often generated from Standard Texts. Language in Easy Read versions is typically assumed to be simpler. However, simplification of language may have unintended consequences. This study aimed to explore the differences in language used between Easy Read health material and the Standard Text versions of the same material produced for the general population. Methods Five Easy Read/Standard Text pairs were sampled and analysed using Systemic Functional Linguistics. This addressed: how people with intellectual disabilities and others were represented by language, the author stance in relation to the reader and the overall organisation of the text. Results The Easy Read versions often used language that was less empowering and inclusive. Conclusion Increased awareness of author power and better knowledge of the impact of language choice could help to redress these issues.
  • Behavioural interventions to treat anxiety in adults with autism and moderate to severe intellectual disabilities: The BEAMS-ID feasibility study

    Langdon, Peter; Apanasionok, Magdalena M; Scripps, Emma; Barrowcliff, Alastair; Biswas, Asit; Bunning, Karen; Burbidge, Cheryl; Byron-Daniel, Katherine; Cookson, Alex; Croom, Sarah; et al. (Wiley, 2024-09)
    Background: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. Method: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes. Results: The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay. Conclusion: The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.
  • The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy – national comparative cohort study

    Badger, Sarah; Watkins, Lance; Bassett, Paul; Roy, Ashok; Eyeoyibo, Mogbeyiteren; sawhney, indermeet; Purandare, Kiran; Wood, Laurie; Pugh, Andrea; Hammett, Joanne; et al. (Cambridge University Press, 2024-04-30)
    Background: A quarter of People with Intellectual Disabilities (PwID) have epilepsy compared with 1% of the general population. Epilepsy in PwID is a bellwether for premature mortality, multimorbidity and polypharmacy. This group depends on their care provider to give relevant information for management, especially epilepsy. There is no research on care status relationship and clinical characteristics of PwID and epilepsy. Aim: Explore and compare the clinical characteristics of PwID with epilepsy across different care settings. Method: A retrospective multicentre cohort study across England and Wales collected information on seizure characteristics, intellectual disability severity, neurodevelopmental/biological/psychiatric comorbidities, medication including psychotropics/anti-seizure medication, and care status. Clinical characteristics were compared across different care settings, and those aged over and younger than 40 years. Results: Of 618 adult PwID across six centres (male:female = 61%:39%), 338 (55%) received professional care whereas 258 (42%) lived with family. Significant differences between the care groups existed in intellectual disability severity (P = 0.01), autism presence (P < 0.001), challenging behaviour (P < 0.001) and comorbid physical conditions (P = 0.008). The two groups did not vary in intellectual disability severity/genetic conditions/seizure type and frequency/psychiatric disorders. The professional care cohort experienced increased polypharmacy (P < 0.001) and antipsychotic/psychotropic use (P < 0.001/P = 0.008).The over-40s cohort had lower autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) comorbidity (P < 0.001/P = 0.007), increased psychiatric comorbidity and challenging behaviour (P < 0.05), physical multimorbidity (P < 0.001), polypharmacy (P < 0.001) and antipsychotic use (P < 0.001) but reduced numbers of seizures (P = 0.007). Conclusion: PwID and epilepsy over 40 years in professional care have more complex clinical characteristics, increased polypharmacy and antipsychotic prescribing but fewer seizures.
  • STOMP during COVID-19: use of psychotropic medication in intellectual disabilities community services – pilot QI project

    Zahid, Sadia; Rauf, Bushra; Lee, Rachel; Sheikh, Hafsa; Roy, Ashok; Pathania, Rani; Zahid, Sadia; Rauf, Bushra; Lee, Rachel; Sheikh, Hafsa; et al. (Emerald, 2024-04-24)
    Purpose A quantitative observational study was conducted. The purpose of this study is to examine the continuing adherence to the stopping over-medication of people with intellectual disability and/or autism guidelines for a cohort of outpatients seen in the outpatients’ clinics in the two teams who participated in this study to review the trend of psychotropic prescribing with a prescription indication along with the utilisation of non-pharmacological interventions. Design/methodology/approach Data was retrospectively collected over a period of one year for patients sampled conveniently in the outpatient’s clinic. The data was collected from two sites from psychiatric letters to the general practitioners (GPs), with the focus being psychotropic prescription indication and their adherence to British National Formulary limits, inclusion of a wider multi-disciplinary team or MDT (including nurses, psychologists and health support workers), use of Clinical Global Impression (CGI) scale for assessing medication side effects and response to treatment. Findings Most of the patients had at least one review in the previous six months. Antipsychotics were the highest prescribed medications without an indication for their use (13.3%) followed by anxiolytics and other medications. CGI recording was suboptimal, with 26% of the patient population did not have medication side effects and effectiveness monitored through this method. In total, 41% of patients were open to community nurses followed by other disciplines.
  • Chronic constipation in people with intellectual disabilities in the community: cross-sectional study

    Laugharne, Richard; sawhney, indermeet; Perera, Bhathika; Wainwright, Delia; Bassett, Paul; Caffrey, Briony; O'Dwyer, Máire; Lamb, Kirsten; Wilcock, Mike; Roy, Ashok; et al. (Cambridge University Press, 2024-03-01)
    Background: One-third to half of people with intellectual disabilities suffer from chronic constipation (defined as two or fewer bowel movements weekly or taking regular laxatives three or more times weekly), a cause of significant morbidity and premature mortality. Research on risk factors associated with constipation is limited. Aims: To enumerate risk factors associated with constipation in this population. Method: A questionnaire was developed on possible risk factors for constipation. The questionnaire was sent to carers of people with intellectual disabilities on the case-loads of four specialist intellectual disability services in England. Data analysis focused on descriptively summarising responses and comparing those reported with and without constipation. Results: Of the 181 people with intellectual disabilities whose carers returned the questionnaire, 42% reported chronic constipation. Constipation was significantly associated with more severe intellectual disability, dysphagia, cerebral palsy, poor mobility, polypharmacy including antipsychotics and antiseizure medication, and the need for greater toileting support. There were no associations with age or gender. Conclusions: People with intellectual disabilities may be more vulnerable to chronic constipation if they are more severely intellectually disabled. The associations of constipation with dysphagia, cerebral palsy, poor mobility and the need for greater toileting support suggests people with intellectual disabilities with significant physical disabilities are more at risk. People with the above disabilities need closer monitoring of their bowel health. Reducing medication to the minimum necessary may reduce the risk of constipation and is a modifiable risk factor that it is important to monitor. By screening patients using the constipation questionnaire, individualised bowel care plans could be implemented.
  • The experiences of adults with intellectual disabilities attending a mindfulness-based group intervention

    Croom, Sarah; Chadwick, Darren; Nicholls, Wendy; McGarry, Ali; Croom, Sarah; McGarry, Ali; Learning Disabilities; Additional Professional Scientific and Technical Field; Coventry and Warwickshire Partnership NHS Trust; University of Wolverhampton; (Wiley, 2021-02-01)
    Mindfulness helps us to “slow down” and notice how we are thinking and how we are feeling. When we notice our thoughts and our feelings, we can choose to do the things that help us to feel better. We wanted to know what people with learning disabilities thought of mindfulness. Nine people with learning disabilities told us what they thought about mindfulness. We found out that: People enjoyed mindfulness activities and the chance to socialise with other people People showed some understanding of mindfulness People could do the mindfulness activities 1.1 Background A growing body of research supports the efficacy of mindfulness-based intervention programmes (MBPs) for people with intellectual disabilities. Existing literature calls for focus on the experiences of people with intellectual disabilities participating in MBPs. 1.2 Materials and Methods This study explored the experiences of nine adults with intellectual disabilities attending an eight-week group MBP delivered within the community. Two audio-recorded group discussions and seven semi-structured interviews were thematically analysed. 1.3 Results Themes were as follows: participants’ experience of the group as a meaningful and enjoyable activity; opportunities for socialisation, sharing, friendship and support; the significance of participant–facilitator relationships; and how participants understood and experienced the mindfulness exercises and concepts. 1.4 Conclusions Some understanding of mindfulness was evident, and participants demonstrated an ability to engage in mindfulness exercises. Findings inform the development of effective MBPs for people with intellectual disabilities.
  • Setting priorities for people with intellectual disability/intellectual developmental disorders across the lifespan: a call to action by the World Psychiatric Association

    Roy, Ashok; Courtenay, Ken; Odiyoor, Mahesh; Walsh, Patricia; Keane, Sarah; Biswas, Asit; Marston, Geoff; Thirulokachandran, Suchithra; Munir, Kerim; Roy, Ashok; et al. (Cambridge University Press, 2021-08)
    People with DSM-5 intellectual disability/intellectual developmental disorder (ID/IDD) or ICD-11 disorders of intellectual development (DID) have multiple healthcare needs, but in many countries these needs are neither recognised nor managed effectively. This paper discusses the negative impact that stigma, discrimination and social exclusion have on the identification and care of persons with ID/IDD in low- and middle-income countries (LMICs). It also reviews different models of care for children, adolescents and adults. In discussing some initiatives in LMICs the emphasis is on early diagnosis, with success in providing locally sourced care for affected people and their families. This is where the medical, social and rights-based models of care intersect and is a premise of the person-centred biopsychosocial framework of the World Psychiatric Association's Presidential Action Plan 2020–2023. The plan invites psychiatrists to take a lead in changing the culture of care, as well as medical education, clinical training and research, with a renewed emphasis on workforce integration and service development in terms of community-based rehabilitation strategies.
  • The Experiences of Carers of Adults with Intellectual Disabilities During the First COVID-19 Lockdown Period

    Patel, Varsha; perez-olivas, gisela; Kroese, Biza Stenfert; Rogers, Gemma; Rose, John; Murphy, Glynis; Cooper, Vivien; Langdon, Peter; Hiles, Steve; Clifford, Clair; et al. (Wiley, 2021-05-15)
    Background The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers. Aim The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period. Methods Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being. Conclusions The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.
  • COVID-19-related prescribing challenge in intellectual disability

    Rauf, Bushra; Sheikh, Hafsa; Majid, Hassan; Roy, Ashok; Pathania, Rani; Rauf, Bushra; Sheikh, Hafsa; Majid, Hassan; Roy, Ashok; Pathania, Rani; et al. (Cambridge University Press, 2021-03-19)
    Background: The COVID-19 pandemic and associated restrictions are expected to affect the mental health of the population, especially people with intellectual disability and/or autism spectrum disorder, because of a variety of biological and psychosocial reasons. Aims: This study aimed to estimate if COVID-19 restrictions are associated with a change in number of total consultations carried out by psychiatrists and prescription of psychotropic medication in people with intellectual disability and/or autism spectrum disorder, within a community intellectual disability service. Method: A quantitative observational study was conducted, involving retrospective and prospective data collection before and during lockdown. Data was collected on a spreadsheet and emailed to all psychiatrists working within the Coventry and Warwickshire Partnership NHS Trust-wide community intellectual disability service. Variables included total consultations, medication interventions, types of medications used, multidisciplinary team input and clinical reasons for medication interventions. Data was analysed separately for child and adolescent mental health services (CAMHS) and adult intellectual disability teams, and for the whole service. Results: During the lockdown period, total consultations in the community intellectual disability service increased by 19 per week and medication interventions increased by two per week. Multidisciplinary team input increased in CAMHS from 0.17 to 0.71 per week and in adult intellectual disability from 5.7 to 6.5 per week. Hypnotics and benzodiazepines were the most commonly prescribed psychotropic medications during the lockdown period. Conclusions: COVID-19-related lockdown resulted in an increase in medication interventions, total consultations and involvement of multidisciplinary teams to manage mental health and behavioural issues in people with intellectual disability and/or autism spectrum disorder.
  • The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period

    Rogers, Gemma; perez-olivas, gisela; Kroese, Biza Stenfert; Patel, Varsha; Murphy, Glynis; Rose, John; Cooper, Vivien; Langdon, Peter; Hiles, Steve; Clifford, Clair; et al. (Wiley, 2021-03-23)
    Background Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.
  • Prescribing antipsychotic medication for adults with intellectual disability: shared responsibilities between mental health services and primary care

    Paton, Carol; Roy, Ashok; Purandare, Kiran; Rendora, Olivia; Barnes, Thomas R. E.; Roy, Ashok; Learning Disabilities; Medical and Dental; Imperial College London; Royal College of Psychiatrists, UK; Coventry and Warwickshire Partnership NHS Trust; Central and North West London NHS Foundation Trust; (Cambridge University Press, 2021-07-26)
    Aims and method We conducted a secondary analysis of data from a Prescribing Observatory for Mental Health audit to assess the quality of requests from intellectual disability services to primary care for repeat prescriptions of antipsychotic medication. Results Forty-six National Health Service Trusts submitted treatment data on 977 adults with intellectual disability, receiving antipsychotic medication for more than a year, for whom prescribing responsibility had been transferred to primary care. Therapeutic effects had been monitored in the past 6 months in 80% of cases with a documented communication indicating which service was responsible for this and 72% of those with no such communication. The respective proportions were 69% and 42% for side-effect monitoring, and 79% and 30% for considering reducing/stopping antipsychotic medication. Clinical implications Where continuing antipsychotic medication is prescribed in primary care for people with intellectual disability, lack of guidance from secondary care regarding responsibilities for monitoring its effectiveness may be associated with inadequate review.
  • The Current Provision of Mental Health Services for Individuals with Mild Intellectual Disability: A Scoping Review

    Walton, Catherine; Medhurst, David; Madhavan, Giri; Shankar, Rohit; Madhavan, Giri; Learning Disabilities; Medical and Dental; St Cadoc’s Hospital, Aneurin Bevan University Health Board, Caerleon; Hafod Y Wennol, Swansea Bay University Health Board; Coventry and Warwickshire Partnership NHS Trust; University of Plymouth Medical School, Truro, Cornwall; Cornwall Partnership NHS Foundation Trust (Taylor and Francis Group, 2021-12-10)
    Objective The objective of this scoping review is to explore the current evidence for the organization, structure, and delivery of mental health services for people with mild ID. Methods The PRISMA-SCr (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was followed. Online databases were used to identify systematic reviews, meta-analyses, scoping reviews, or guidelines published between 2003 and 2020. Articles were reviewed using Roever & Zoccai criteria for critical appraisal of systematic reviews and meta-analyses. Results 130 records were identified, of which 91 were longlisted. Of these, 28 articles were shortlisted after review of abstracts prior to review of full-text papers. The review included 11 studies: one meta-analysis, eight systematic reviews, and two scoping reviews. These studies approached the provision of mental health services for individuals with mild ID from various angles – including service organization and access, therapies, and patient feedback. Conclusions According to the Roever & Zoccai criteria, there was a lack of high-quality evidence, which limited the findings and conclusions. The available evidence suggested that despite higher levels of psychopathology there is not a corresponding consideration in care for individuals with mild ID in general psychiatric services. There was no conclusive evidence on better level of services or outcomes being provided either by the general psychiatric services or specialist ID psychiatric services. Some evidence was found for intensive case management and assertive outreach for individuals with mild ID, but this was not replicated in further studies. In terms of treatment, there was no high-quality evidence found for pharmacological interventions, with some limited evidence around psychological therapy for the treatment of depression in this vulnerable population. Overall, it was found that an increase in staff training would be beneficial in terms of timely access to services and appropriate treatment. There is a need for inclusive, evidence-based guidance as regards service development for people with mild ID and MH problems.
  • An international field study of the ICD-11 behavioural indicators for disorders of intellectual development

    Lemay, Kyle; Kogan, C. S.; Rebello, T. J.; Keeley, J. W.; Bhargava, R.; Sharan, P.; Sharma, M.; Kommu, J. V. S.; Kishore, M. T.; de Jesus Mari, J.; et al. (Wiley, 2022-02-16)
    Background: The World Health Organization (WHO) has approved the 11th Revision of the International Classification of Diseases (ICD-11). A version of the ICD-11 for Mental, Behavioural and Neurodevelopmental Disorders for use in clinical settings, called the Clinical Descriptions and Diagnostic Requirements (CDDR), has also been developed. The CDDR includes behavioural indicators (BIs) for assessing the severity of disorders of intellectual development (DID) as part of the section on neurodevelopmental disorders. Reliable and valid diagnostic assessment measures are needed to improve identification and treatment of individuals with DID. Although appropriately normed, standardised intellectual and adaptive behaviour assessments are considered the optimal assessment approach in this area, they are unavailable in many parts of the world. This field study tested the BIs internationally to assess the inter-rater reliability, concurrent validity, and clinical utility of the BIs for the assessment of DID. Methods: This international study recruited a total of 206 children and adolescents (5-18 years old) with a suspected or established diagnosis of DID from four sites across three countries [Sri-Lanka (n = 57), Italy (n = 60) and two sites in India (n = 89)]. Two clinicians assessed each participant using the BIs with one conducting the clinical interview and the other observing. Diagnostic formulations using the BIs and clinical utility ratings were collected and entered independently after each assessment. At a follow-up appointment, standardised measures (Leiter-3, Vineland Adaptive Behaviour Scales-II) were used to assess intellectual and adaptive abilities. Results: The BIs had excellent inter-rater reliability (intra-class correlations ranging from 0.91 to 0.97) and good to excellent concurrent validity (intra-class correlations ranging from 0.66 to 0.82) across sites. Compared to standardised measures, the BIs had more diagnostic overlap between intellectual and adaptive functioning. The BIs were rated as quick and easy to use and applicable across severities; clear and understandable with adequate to too much level of detail and specificity to describe DID; and useful for treatment selection, prognosis assessments, communication with other health care professionals, and education efforts. Conclusion: The inclusion of newly developed BIs within the CDDR for ICD-11 Neurodevelopmental Disorders must be supported by information on their reliability, validity, and clinical utility prior to their widespread adoption for international use. BIs were found to have excellent inter-rater reliability, good to excellent concurrent validity, and good clinical utility. This supports use of the BIs within the ICD-11 CDDR to assist with the accurate identification of individuals with DID, particularly in settings where specialised services are unavailable.
  • Post-COVID syndrome and adults with intellectual disability: another vulnerable population forgotten?

    Shankar, Rohit; Perera, Bhathika; Roy, Ashok; Courtenay, Ken; Laugharne, Richard; Sivan, Manoj; Roy, Ashok; Learning Disabilities; Medical and Dental; Cornwall Partnership NHS Foundation Trust, Truro, UK and Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth Peninsula School of Medicine, Truro, UK; Barnet Enfield and Haringey Mental Health Trust; Coventry and Warwickshire Partnership NHS Trust; School of Medicine University of Leeds; (Cambridge University Press, 2023-01)
    An area of interest presently is the lingering symptoms after COVID-19, i.e. post-COVID-19 syndrome (PCS). Specifics of diagnosis and management of PCS are emerging. However, vulnerable populations such as those with intellectual disabilities, who were disproportionately affected by the pandemic, risk being 'left behind' from these considerations.
  • Community-based compassion-focussed therapy for adults with an intellectual disability: a literature review

    Roberts, Bethany; Roberts, Bethany; Learning Disabilities; Additional Professional Scientific and Technical Field; Coventry and Warwickshire Partnership NHS Trust (Emerald, 2023-05-08)
    Purpose This literature review aims to ascertain the outcomes and perspectives of community-based compassion-focused therapy (CFT) for adults with intellectual disabilities. Design/methodology/approach A comprehensive search of five databases was conducted systematically, with one additional study identified manually, yielding eight relevant studies. Methodological quality was appraised using two tools to account for heterogeneity in study designs. Findings Two studies conducted a CFT-derived task while six studies conducted full CFT interventions, of which two delivered group interventions. Qualitative findings were favourable towards CFT, though some quantitative outcomes were inconsistent across the literature and with qualitative results. It is concluded that CFT is perceived as valuable and appears to produce positive outcomes for adults with intellectual disabilities. However, larger, randomised control trials are required to establish CFT as an efficacious, evidence-based intervention. Originality/value This review provides insight into the outcomes and perspectives of CFT for individuals with an intellectual disability which has not been explicitly explored prior. Therefore, a holistic and specific examination of community-based CFT for individuals with intellectual disabilities is introduced to the literature.
  • A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co-researchers involved and what are their experiences?

    Hewitt, Olivia; Langdon, Peter; Tapp, Katherine; Larkin, Michael; Langdon, Peter, E.; Learning Disabilities; Additional Professional Scientific and Technical Field; University of Warwick; Berkshire Healthcare NHS Foundation Trust; Coventry and Warwickshire Partnership NHS Trust; School of Psychology, Aston University, Birmingham; (Wiley, 2023-04-01)
    Background Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed-methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.
  • Evaluation of an inpatient sex offender treatment programme for men with intellectual disabilities

    Hickman, Gareth; Morris, Antonia; Hickman, Gareth; Morris, Antonia; Learning Disabilities; Additional Professional Scientific and Technical Field; Coventry and Warwickshire Partnership NHS Trust (Emerald, 2022-09-16)
    Purpose The purpose of this paper is to report on an inpatient cognitive behavioural sex offender treatment group programme developed and provided to people with intellectual disabilities detained in medium and low security hospital settings. The programme was delivered five times between 2012 and 2020. This paper describes the integration of the programme within a wider treatment pathway model and provides analysis of outcome data. Design/methodology/approach The programme was evaluated over five group programmes using self-report psychometric measures related to treatment targets in the reduction of sexual offending risk, including cognitive distortions, sexual attitudes and knowledge and locus of control; recidivism data spanning up to 7 years post discharge is also provided. The treatment pathway and a description of the programme are provided. Findings The results of this paper showed improvements in sexual knowledge, cognitive distortions and locus of control, however not to a statistically significant degree. No recidivism was observed in the follow-up period. Originality/value This paper adds to the evidence base of interventions focused on cognitive behavioural approaches to the treatment and risk reduction of sexual offending in men with intellectual disabilities and adds to the debate regarding the effectiveness of such programmes with offenders with intellectual disabilities.
  • Awareness of social care needs in people with epilepsy and intellectual disability

    Gabrielsson, A; Tromans, Samuel; Newman, H; Triantafyllopoulou, Paraskevi; Hassiotis, Angela; Bassett, P; Watkins, L; sawhney, indermeet; Cooper, M; Griffiths, L; et al. (Elsevier, 2023-08)
    Background: Nearly a quarter of people with intellectual disability (ID) have epilepsy with large numbers experiencing drug-resistant epilepsy, and premature mortality. To mitigate epilepsy risks the environment and social care needs, particularly in professional care settings, need to be met. Purpose: To compare professional care groups as regards their subjective confidence and perceived responsibility when managing the need of people with ID and epilepsy. Method: A multi-agency expert panel developed a questionnaire with embedded case vignettes with quantitative and qualitative elements to understand training and confidence in the health and social determinants of people with ID and epilepsy. The cross-sectional survey was disseminated amongst health and social care professionals working with people with ID in the UK using an exponential nondiscriminative snow-balling methodology. Group comparisons were undertaken using suitable statistical tests including Fisher’s exact, Kruskal-Wallis, and Mann-Whitney. Bonferroni correction was applied to significant (p < 0.05) results. Content analysis was conducted and relevant categories and themes were identified. Results: Social and health professionals (n = 54) rated their confidence to manage the needs of people with ID and epilepsy equally. Health professionals showed better awareness (p < 0.001) of the findings/recommendations of the latest evidence on premature deaths and identifying and managing epilepsy-related risks, including the relevance of nocturnal monitoring. The content analysis highlighted the need for clearer roles, improved care pathways, better epilepsy-specific knowledge, increased resources, and better multi-disciplinary work. Conclusions: A gap exists between health and social care professionals in awareness of epilepsy needs for people with ID, requiring essential training and national pathways.
  • Using the consensus group method to select the best screening tools for autism and intellectual disability for use with Nigerian adolescents

    Nwokolo, Eziafakaku; Murphy, Glynis; Mensink, Anne-Marie; moonen, xavier; Langdon, Peter; Langdon, Peter, E.; Learning Disabilities; Additional Professional Scientific and Technical Field; Tizzard Centre, University of Kent; Norfolk Community Health and Care NHS Trust; University of Amsterdam; Centre for Educational Development, Appraisal and Research (CEDAR), and Centre for Mental Health and Wellbeing Research, University of Warwick; Coventry and Warwickshire Partnership NHS Trust (Wiley, 2023-08-13)
    Diagnosing autism or ID using a gold-standard tool can be time-consuming, costly, and requires training, which is generally limited in Nigeria, and the rest of Africa. Screening, on the other hand, can be quick and effective, with minimal training depending on the tool (Iragorri & Spackman, Public Health Reviews, 2018;39(1):17), thus making the availability of short screeners a necessity in Nigeria, and the rest of Africa. We identified four screening tools through a previously completed systematic review (Nwokolo et al., Review Journal of Autism and Developmental Disorders, 2022;1–23.), two (SCQ and AQ-10) for autism and two (SCIL and CAIDS-Q) for ID, which appeared appropriate for validation for use within African nations. The Nominal Group Technique was used with a purposive group of professionals, parents, and laypersons to select and adapt the existing screening tools for autism and ID for use with older children and adolescents in Nigeria. The group examined the screening tools for cultural relevance, face and content validity. Following the discussions, items were either (1) accepted in the original form or (2) more culturally appropriate examples chosen if at least 75% of participants agreed. The group selected the SCQ for autism and the SCIL for ID. The minimum agreement on all autism and ID measures items was 84%, and this indicated the measures had face and content validity for use within Nigeria. Following the recommendations and consensus of the group, the SCQ and the SCIL 14–17 were agreed on as measures to be validated with the Nigerian adolescents, with only a small number of adjustments needed to allow for different use of language, customs and environment in the Nigerian context.
  • Mapping and identifying service models for community-based services for children with intellectual disabilities and behaviours that challenge in England

    Taylor, Emma; Thompson, Paul; Manktelow, Nicholas; Flynn, Samantha; Gillespie, David; Bradshaw, Jill; Gore, Nick; Liew, Ashley; Lovell, Mark; Sutton, Kate; et al. (BMC, 2023-12-04)
    Background One in five children with an intellectual disability in the UK display behaviours that challenge. Despite associated impacts on the children themselves, their families, and services, little research has been published about how best to design, organise, and deliver health and care services to these children. The purpose of this study was to describe how services are structured and organised (“service models”) in England for community-based health and care services for children with intellectual disability who display behaviours that challenge. Methods Survey data about services were collected from 161 eligible community-based services in England. Staff from 60 of these services were also interviewed. A combination of latent class and descriptive analysis, coupled with consultation with family carers and professionals was used to identify and describe groupings of similar services (i.e., “service models”). Results The latent class analysis, completed as a first step in the process, supported a distinction between specialist services and non-specialist services for children who display behaviours that challenge. Planned descriptive analyses incorporating additional study variables were undertaken to further refine the service models. Five service models were identified: Child and Adolescent Mental Health Services (CAMHS) (n = 69 services), Intellectual Disability CAMHS (n = 28 services), Children and Young People Disability services (n = 25 services), Specialist services for children who display behaviours that challenge (n = 27 services), and broader age range services for children and/or adolescents and adults (n= 12 services). Conclusions Our analysis led to a typology of five service models for community health and care services for children with intellectual disabilities and behaviours that challenge in England. Identification of a typology of service models is a first step in building evidence about the best provision of services for children with intellectual disabilities who display behaviours that challenge. The methods used in the current study may be useful in research developing service typologies in other specialist fields of health and care.

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