Intellectual Disability Services Research Articles

Decision support tool for physical health (DST-PH): stratifying risks to reduce avoidable deaths in people with intellectual disability

PurposePeople with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.Design/methodology/approachThis study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).FindingsA pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.Originality/valueTo the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study

BackgroundGlobally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID’s physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa.MethodsThis qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers.ResultsThe findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services.ConclusionsGiven the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.

Acceptability of virtual psychiatric consultations for routine follow-ups post COVID-19 pandemic for people with intellectual disabilities: cross-sectional study.

After the rapid implementation of digital health services during the COVID-19 pandemic, a paucity of research exists about the suitability of remote consulting in people with intellectual disabilities and their carers, particularly for neuropsychiatric reviews. This study examines when remote neuropsychiatric routine consulting is suitable for this population. A survey was conducted of people with intellectual disabilities and their carers, examining their preference between face-to-face and video consultations for ongoing neuropsychiatric reviews within a rural countywide intellectual disability service in Cornwall, England (population: 538 000). The survey was sent to all adults with intellectual disabilities open to the service on 30 July 2022, closing on 30 September 2022. Participants were asked to provide responses on 11 items predesigned and co-produced between clinicians and experts by experience. The entire service caseload of people had White ethnicity, reflecting the ethnic demographics of Cornwall. Responses received without consent were excluded from the study dataset. Of 271 eligible participants, 119 responses were received, 104 of whom consented to having their anonymised data used for research analysis. There were no significant differences between preferences and age and gender variables. There was no statistically significant difference regarding preference for the reintroduction of face-to-face appointments (52.0%) compared with video consultations (48.0%). Travel distance (>10 miles) to the clinical setting was important but did not outweigh benefits for those preferring a face-to-face appointment. This study offers insights into the factors that influence preferences about what type of neuropsychiatric appointment is most suitable for people with intellectual disabilities.

Sexuality of People with Intellectual Disabilities: Dynamic with Parents and Social Services Personnel in a Chinese Context

Sexuality is a valuable part of people’s lives, including people with intellectual disabilities (ID). Parents and social services personnel are significant parties for promoting the autonomy of people with ID regarding sexuality, although evidence reveals their actions tend to be in the opposite direction. Sexual attitudes do not emerge solely as personal or individual but evolve from interactions with others in a particular sociocultural environment. To explore the sexuality of people with ID, this study set out to understand the dynamic of people with ID, parents and social services personnel within the cultural context of Hong Kong. In total, 19 participants including people with mild ID, parents and social services personnel were recruited. Individual interviews were conducted, and the data were analyzed applying Interpretative Phenomenological Analysis and dramaturgy. Findings revealed the participants’ experiences, obstacles, and underlying feelings regarding the sexuality of people with ID, and the phenomenon, “not taking action” formed by all the groups. Chinese Confucian culture was revealed as the factor influencing the dynamic on the issues of sexuality. With respect to cultural expectations, government and social services agency leadership should take the lead to adopt an evidence-based sex education protocol.

Impact of family-centered care in families with children with intellectual disability: A systematic review

BackgroundFamily-Centered Care (FCC) is an approach to healthcare planning, delivery and evaluation, based on beneficial partnerships between health professionals, patients and families. FCC may be particularly relevant for families with children with intellectual disability (ID), given their needs of continuum care. ObjectiveTo identify which components of the FCC are practiced and which health outcomes are considered effective in families with children with ID. MethodA systematic review guided by the PRISMA STATEMENT 2020 approach and the STROBE reporting guidelines was performed on specific databases through the EBSCOhost Web platform: MEDLINE with Full Text, CINAHL PLUS with Full Text, Academic Search Complete and Psychology and Behavioral Sciences Collection. Peer-reviewed articles published in English or Portuguese languages from 2018 to September 2023 were retrieved. Methodological quality was established using the Quality Assessment Tool for Observational, Cohort and Cross-Sectional Studies – NHLBI, NIH. ResultsTen studies met the eligibility criteria and were synthetized. The results revealed nine components, reflecting the way FCC was developed: shared decision-making; family education; respect for culture; family engagement; recognition of the family's needs, characteristics and interests; specialized care support; social and emotional support; family functionality; and family seen as a unit. The health outcomes demonstrate effective gains in improving children's health through family satisfaction with health services. Also achieved psychological and social benefits, with improved family well-being and quality of life, favoring family empowerment. ConclusionsThe evidence suggests that FCC components involves an effective partnership between the family and health professionals as the main key in developing care plans, as well as the experience that the family unit brings to the delivery of care. FCC approach include all family members as decision-makers, providing emotional, physical and instrumental levels of support. Health outcomes emerged in three strands; for children with ID, families and health services.

What are the key influences and challenges around weight management faced by patients in UK adult secure mental health settings? A focused ethnographic approach

ObjectivesExcess weight is highly prevalent in secure (forensic) mental health services and impacts negatively on patients’ physical and mental health. This study sought to identify the key influences and challenges...

Chronic constipation in people with intellectual disabilities in the community: cross-sectional study.

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. To enumerate risk factors associated with constipation in this population. 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. 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. 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.

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 and 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 of psychosocial interventions to address 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 addressing aggressive challenging behaviour 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 to reduce aggressive challenging behaviour in adults with intellectual disabilities.

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.