Intellectual Disability Services Research Articles

Who is at risk? Adults with intellectual disability at risk of admission to mental health inpatient care.

NHS England's Transforming Care agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission. A cohort, retrospective study of adults using community intellectual disability services in the North West of England from 2018 to 2022 was undertaken. We compared 211 adults at imminent risk of admission to a mental health hospital and 249 at significant (but not imminent) risk on a validated risk stratification tool. Individuals at significant risk were more likely to have moderate intellectual disability. Individuals at imminent risk were more likely to have diagnoses of mild intellectual disability, autism, personality disorder, or psychosis. By furthering our understanding of the clinical characteristics of those most at risk of admission, the findings inform more appropriate targeting of resources.

Challenges in care and service provision for older adults with intellectual disabilities and complex age‐related conditions in Ireland

AbstractBackgroundPeople with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes.MethodA descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members.ResultsContinued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per‐capita funding practices were reported as unresponsive to growing age‐related complexity and fundamentally unsustainable.ConclusionsThe health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age‐related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.

Stakeholder views on the barriers and facilitators of psychosocial interventions to address reduction in aggressive challenging behaviour in adults with intellectual disabilities

Background Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population.

A model of hope as a protective measure to lower burnout and secondary traumatic stress among employees working in developmental and intellectual disabilities services.

Burnout and secondary traumatic stress (STS) are problems for the workforce supporting people with developmental disabilities. This study investigated hope as a potential protective resource for burnout and STS among the developmental disability services workforce. One hundred and fifty-two non-supervisor caseworkers from a state agency, developmental disabilities division were recruited to participate in an anonymous web-based survey. The analyses showed that hope was negatively associated with the three dimensions of STS (intrusion, avoidance, and arousal) and burnout. Controlling for tenure in the workforce and STS, the results of the hierarchical regression analyses showed that hope accounted for a significant incremental variance to burnout. These findings provide support for emerging literature showing hope as a protective resource to workforce burnout.

When the ward is the patient: Using the PRISM protocol to understand and reduce violence in an inpatient intellectual disability setting.

Violence in inpatient settings is recognised as a worldwide issue, with inpatient intellectual disability services having higher rates than other mental health settings. Violence results in injury and illness, lack of confidence in the organisation and staff burnout. These combined effects have a negative impact on the ability of services to provide therapeutic environments. Attempts to manage violence tend to focus on the individual. This is only one part of the solution. Situational risk factors for violence within secure settings can be identified and modified to reduce violence rates. The role of situational risk factors in rates of institutional violence requires consideration in addition to individual patient risk assessment and management. To discuss an illustrative case study of a ward experiencing high levels of violence, resulting in staff burnout and low morale. To describe how assessing and addressing the relevant situational risk factors led to demonstrable reductions in violence and improvements in the service provided. This case study demonstrates the practical application of assessing and managing situational risk factors for violence in a locked intellectual disability ward in order to effectively reduce levels of violent incidents. A description of the violence and critical issues faced by the ward is provided, noting key elements of the timeline of events and the application of the Promoting Risk Intervention by Situational Management (PRISM) process to address these. The PRISM protocol enabled a comprehensive assessment and understanding of situational factors relevant to the violence rates in the ward. The recommendations following the analysis enabled the management team to identify areas for immediate and long-term action. Practical steps to address issues such as improving soundproofing were implemented quickly whilst other issues required changes over the longer term. Significantly, reduced levels of violence were observed within a 2-month period of immediate steps being taken, with further gains achieved over the longer term. This paper provides the only example of the use of the PRISM protocol in an intellectual disability inpatient setting. The reduction in violence seen in this unit provides 'real world' evidence that addressing situational factors for institutional violence can be effective in intellectual disability inpatient settings, with beneficial outcomes for patients and staff. Whilst individual patient risk assessment and risk management are key components of forensic mental health care, situational risk factors for violence are highly relevant to rates of violence within secure care settings. Structured assessment of situational risk factors should be considered when inpatient settings experience persistent high levels of violence. Further research on the impact of assessing situational risk factors in forensic mental health settings (including intellectual disability services) would help to develop the existing evidence base.

Forensic mental health intellectual and developmental disability service: an analysis of referral patterns and comparison with community mental health intellectual disability (MHID) services in Ireland

PurposeThe purpose of this study is to analyse the characteristics of all the referrals to the forensic MHIDD service over the past five years and to compare these characteristics to the cohort of service users attending the three general MHID services based in Dublin which are Service 1, Service 2 and Service 3.Design/methodology/approachThis is a cross-sectional study of adults attending the three generic MHID services and the national forensic MHIDD service. The medical files of service users attending the MHID services were reviewed, and data such as age, gender, level of intellectual disability and psychiatric diagnoses were extracted and compiled into a database. The forensic MHIDD service has since its inception maintained a database of all referrals received and reviewed. The characteristics data needed were extracted from the forensic MHIDD database. All these data were then analysed using the Statistical Package for Social Sciences (SPSS).FindingsThe majority of the three MHID service users were in the moderate to profound range of intellectual disability, while the majority of the cases assessed by forensic MHIDD had normal IQ, borderline IQ and mild intellectual disability with 66.1%. The prevalence of neurodevelopmental disorder, schizophrenia and emotionally unstable personality disorder in the forensic MHIDD is comparable to the three MHID services. The prevalence of depression, bipolar affective disorder (BPAD), anxiety disorder and obsessive-compulsive disorder (OCD) is higher in the three MHID services than in the forensic MHIDD service.Originality/valueThe FHMIDD received referrals at a greater level of overall ability, with two-thirds of the service users having mild intellectual disability to normal IQ. The prevalence of neurodevelopmental disorder such as ASD and schizophrenia is comparable between the forensic MHIDD and the three MHID services. There is a higher prevalence of depression, BPAD, anxiety disorder and OCD in the three MHID services as compared to the forensic MHIDD service.

Assessing adherence to National Institute for Health and Care Excellence dementia assessment and diagnosis guidelines in adults with intellectual disability: a retrospective cohort study

PurposeThis study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.Design/methodology/approachThe study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.FindingsThe authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.Originality/valueTo the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.

Evaluation of a novel, multicomponent anxiety management programme for people with intellectual disability: protocol for a mixed-methods, quasi-experimental feasibility study

IntroductionStudies have shown some benefits to single approaches to psychological therapies for the treatment of anxiety in people with intellectual disability such as modified cognitive–behavioural therapy and mindfulness. To our...

Stakeholder views on the barriers and facilitators of psychosocial interventions to address reduction in aggressive challenging behaviour in adults with intellectual disabilities.

Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population.

Promoting the intellectual disability specialty within clinical psychology training; what are the barriers and how can we overcome them?

Easy to read summary■Even though more psychologists are being trained, it can still be hard for Intellectual Disability (ID) services to employ psychologists.■This article talks about the psychology training process and how this might not encourage people to work in ID.■We give some ideas of things that might help during training, so that Trainees can learn more about working in ID services.■We hope this might make them more likely to consider working in ID services.■This is important because if there are not enough psychologists in ID services, people with intellectual disabilities may struggle to find the psychological help they need.

Perhaps workforce equilibrium has been achieved: We just don’t like the outcome

The vacancy rate associated with Direct Support Professional positions within the intellectual disability service system was examined. Based on an increasing number of persons receiving residential services and a similarly increasing number of Direct Support Professionals, it was suggested that an equilibrium between supply and demand had been reached. It was acknowledged that this “equilibrium” clearly does not meet the satisfaction of people working in and supported by the field. A possible explanation was offered.

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England.

Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.

Group CBT for men with intellectual disabilities and/or autism who have harmful sexual behaviour.

Men with intellectual disabilities and/or autism sometimes engage in harmful sexual behaviour (HSB), but it may be harder for them to access treatment, than it is for non-disabled men. The aim of this study was to evaluate the effect of attending an adapted CBT group, known as SOTSEC-ID, on men with intellectual disabilities and/or autism who had HSB. Ninety-eight men from intellectual disability services, who had ID and/or autism and a history of HSB were recruited, and they received group CBT for a year (46 of these men have been previously reported). Harmful sexual behaviour, sexual knowledge, distorted cognitions and victim empathy were measured before and after treatment, and at 6 month follow-up. There were low levels of further harmful sexual behaviour: 12% of men engaged in further HSB during the 1-year period of the group, and 8% engaged in further HSB in the 6-month follow-up period. There were also significant improvements in sexual knowledge, distorted cognitions and victim empathy following treatment, maintained at 6-month follow-up. Men with autism showed significantly more non-contact HSB, were less likely to have been interviewed by police and had higher rates of further HSB, compared to men without autism. It is concluded that SOTSEC-ID is a promising treatment for men with ID/autism and HSB. Nevertheless, the study had a number of limitations and lacked a control group, so there is now an urgent need for a proper controlled study.

Review and update of the Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD).

The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. To revise and improve the HoNOS-LD's utility in contemporary intellectual disability (ID) services whilst retaining its original objectives and five-point severity ratings. ID clinicians were invited to complete an online survey, rating each item on the existing measure for being fit for purpose, identifying issues and suggesting improvements based on their experience of using the HoNOS-LD in practice. Scales were then assessed and revised sequentially; survey responses were used to inform discussion and revisions to the HoNOS-LD by the Advisory Board. A total of 75 individuals replied. Respondents had used HoNOS-LD for an average of 8.0 years (S.D. 5.28 years) and 88% found the scale to be useful in their practice. On average, respondents used HoNOS-LD ratings to inform care 42.4% of the time (S.D. 33.5%). For each scale there was a significant negative correlation between the percentage of positive/very positive respondent ratings and the number of changes proposed. Common changes included simplifying terms, reducing ambiguity and replacing anachronistic language. The changes outlined in this paper are based on the advisory group's expert consensus. These changes are intended to improve reliability and validity but now need empirical testing as well as review by service users.

The long-term psycho-social impact of the pandemic on people with intellectual disability and their carers.

People with intellectual disabilities (PWID) are at six times higher risk of death due to COVID-19. To mitigate harm, as a high-risk group, significant social changes were imposed on PWID in the UK. Alongside these changes, the uncertainty of the pandemic influence, caused PWID and their carers to encounter significant stress. The evidence of the pandemic's psycho-social impact on PWID originates mainly from cross-sectional surveys conducted with professionals and carers. There is little research on the longitudinal psycho-social impact of the pandemic from PWID themselves. To examine the long-term psycho-social impact of the pandemic on PWID. A cross-sectional survey, following STROBE guidance, of 17 Likert scale statements (12 to PWID and 5 to their carers) to ascertain the pandemic's psychosocial impact was conducted. Every other PWID open to a specialist Intellectual Disability service serving half a UK County (pop:500,000) was selected. The same survey was re-run with the same cohort a year later. Descriptive statistics, Mann-Whitney, Chi-square and unpaired-t tests were used to compare responses. Significance is taken at p < .05. Comments were analysed using Clarke and Braun's approach. Of 250 PWID contacted, 100 (40%) responded in 2020 and 127 (51%) in 2021. 69% (2020) and 58% (2021) reported seeking medical support. Carers, (88%, 2020 and 90%, 2021) noticed emotional changes in PWID they cared for. 13% (2020) and 20% (2021) of PWID had their regular psychotropics increased. 21% (2020) and 24% (2021) had their pro re nata (PRN) medication adjusted. PWID or carers demonstrated no statistically significant variation in responses between themselves from 2020 to 2021. PWID were more likely to report being upset/distressed compared to their carers' perceptions of them in both years (p < .001). Four themes were identified. This longitudinal study highlights the diverse psycho-social impact of the pandemic on PWID in the UK. The Pandemic's psycho-social impact has been significantly underestimated.

Digitalization of welfare organizations for persons with intellectual disabilities: between democratic ideals, legitimacy and institutional logics

Information and communication technology (ICT) and digital media are less accessible for persons with intellectual disability (ID) but are important for citizenship. The aim was to conceptualize officials understanding of ICT usage among people with ID, and to analyze the possible influence of this understanding on the provision of services for people with ID. A qualitative study was conducted, using semi-structured interviews with municipal officials and politicians in the disability service area. Thematic analyses were conducted. ICT use is understood as an arena for democratization. Findings also illustrate the tension between integrity and protection as well as between legal and moral aspects of digital transformation in service provision. This understanding of digitalization is permeated by an individualized approach but conditioned by organizational issues. Disability services can be understood as undergoing digital transformation where regulative and normative elements in this area need to be harmonized to facilitate digitalization successfully.

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

PurposeThe purpose of the study was to examine whether there were differences in the provision of non-pharmacological interventions based on the level of intellectual disability and the presence or absence of autism. 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 the overuse of medications in people with intellectual disability, it is important that these individuals have access to appropriate non-pharmacological interventions. The authors examined the relationship between an individual’s level of intellectual disability and the presence or absence of autism with access to relevant non-pharmacological interventions from specialist community intellectual disability services.Design/methodology/approachA cross-sectional study of adults accessing four specialist intellectual disability services in North West England in 2019.FindingsThere was a high prevalence of mental health comorbidity, even higher for autistic adults. However, a relatively small percentage of the study population was receiving psychological interventions. The most frequent non-pharmacological intervention was a positive behaviour support plan, irrespective of comorbid mental illnesses.Research limitations/implicationsNot 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.Originality/valueThis large sample study examined the relationship between intellectual disability level and the presence of autism with accessing psychological interventions.

Mortality risk in adults with intellectual disabilities and epilepsy: an England and Wales case-control study.

People with epilepsy (PWE) and people with intellectual disabilities (ID) both live shorter lives than the general population and both conditions increase the risk of death further. We aimed to measure associations between certain risk factors for death in PWE and ID. A retrospective case-control study was conducted in ten regions in England and Wales. Data were collected on PWE registered with secondary care ID and neurology services between 2017 and 2021. Prevalence rates of neurodevelopmental, psychiatric and medical diagnoses, seizure frequency, psychotropic and antiseizure medications (ASM) prescribed, and health activity (epilepsy reviews/risk assessments/care plans/compliance etc.) recorded were compared between the two groups. 190 PWE and ID who died were compared with 910 living controls. People who died were less likely to have had an epilepsy risk assessment but had a greater prevalence of genetic conditions, older age, poor physical health, generalized tonic-clonic seizures, polypharmacy (not ASMs) and antipsychotic use. The multivariable logistic regression for risk of epilepsy-related death identified that age over 50, medical condition prevalence, antipsychotic medication use and the lack of an epilepsy review in the last 12months as associated with increased risk of death. Reviews by psychiatrists in ID services was associated with a 72% reduction in the odds of death compared neurology services. Polypharmacy and use of antipsychotics may be associated with death but not ASMs. Greater and closer monitoring by creating capable health communities may reduce the risk of death. ID services maybe more likely to provide this holistic approach.

Mothers’ experiences of their adopted child being diagnosed with an intellectual disability post-adoption

Adoptive-parenting and parenting a child with intellectual disabilities (ID) both present additional stressors relative to birth parenting and adoptive parenting of children without an ID. However, despite children with ID being overrepresented among adopted children populations, very little is known about the parental experiences of having a child diagnosed with an ID post adoption. Interpretative Phenomenological Analysis was used to analyse interviews from eight adoptive mothers regarding their experiences of their child being diagnosed with an ID post-adoption. Three superordinate themes were developed: ‘Trauma of intellectual disability’ related to experiences of betrayal, loss and searching for answers in the context an unexpected diagnosis; ‘isolation and marginalisation’ illustrated experiences of isolation from friends, family and professionals alike; and ‘growth and resilience’ highlighted how mothers leant into challenges and renegotiated their hopes for the future. The findings highlighted a lack of appropriately tailored post-adoption and post-diagnostic support from services. Adoptive mothers requested greater inclusion and transparency during the diagnostic process. The findings indicated the importance of adoptive mothers ‘finding their tribe’ suggesting that post-adoption and ID services could do more to facilitate support networks of people with shared experiences.

Staff views on reflective practice groups in an inpatient assessment and treatment unit for people with intellectual disabilities

PurposeAlthough it is recommended that reflective practice groups (RPGs) are used to support staff in inpatient intellectual disability (ID) services, there is to date no research on their effectiveness or how staff perceive RPGs in these settings. This paper aims to evaluate staff perceptions of the RPGs in an assessment and treatment unit for people with ID and to ascertain the nature of any barriers for staff in attending the group.Design/methodology/approachThirteen staff completed questionnaires ascertaining their views on the purpose, process and impact of the RPG run within the service. Questionnaires included a version of the clinical supervision evaluation questionnaire (CSEQ; Horton et al., 2008) adapted for this context and a questionnaire designed by the authors examining barriers to attending the group.FindingsStaff responses indicated that they valued the group and perceived it as improving their clinical practice and their self-awareness. Staff did not always perceive group sessions as having clear aims and did not perceive the group as enhancing their well-being or their awareness of gaps in their skills. RPGs may be most effective if they form part of a service-wide approach to staff support and development.Originality/valueTo the best of the authors’ knowledge, this is the first evaluation of RPGs in inpatient ID services. The adapted CSEQ was found to be an easily implemented method of evaluating RPGs in an inpatient ID setting.