Intellectual Disability Services Research Articles

Exploring how to deliver videoconference-mediated psychological therapy to adults with an intellectual disability during the coronavirus pandemic

Purpose The novel coronavirus and associated restrictions have resulted in mental health services across the UK having to adapt how they deliver psychological assessments and interventions. The purpose of this paper is to explore the accessibility and prospective acceptability of providing telephone and videoconference-mediated psychological interventions in individuals with intellectual disabilities. Design/methodology/approach As part of a service evaluation, a mixed-methods questionnaire was developed and completed by clients who had been referred for psychological therapy at an adult intellectual disabilities’ community health service in the north of England. All clients were assessed using the Red/Amber/Green (RAG) system by a consultant clinical psychologist for risk and potential suitability for indirect service delivery given their ability and needs. Findings Overall, 22 clients were invited to take part, of which, only seven (32%) were accepting of telephone or videoconference-mediated psychological therapy. Most of the clients were unable to engage in video-conference therapy and therefore, only suitable for phone therapy. This paper presents the remaining findings and discusses the clinical implications and unique considerations for intellectual disability services drawing on the existing literature. Originality/value This is the first paper that the authors are aware of, examining videoconference-mediated psychological therapy in this population. It is hoped the data will be used to help inform practice or policy when using such therapeutic approaches in adults with an intellectual disability.

People with intellectual disability and the digitization of services

As digital technologies have become ubiquitious in contemporary urban environments, geographers should recognize the co-constitutive role of such technologies in the production of space and highlight the unequal impacts of technologies, infrastructure and code on people’s lives. Building on recent developments in digital geography and inequality, this paper highlights highly uneven processes of attunement with technology. Drawing on interviews with people with intellectual disability and urban services staff in Melbourne, Australia, this paper demonstrates that while creating new opportunities for some people with intellectual disability, digitization of services has also produced new barriers to their inclusion in urban spaces. By focusing on three sets of service digitization – electronic payment systems, public transport e-ticketing and public library digitization – we show that the succesfull engagement of people with intellectual disability with digital technologies depends on the alignment of diverse components such as the person’s skills and economic resources, the availability and skills of both disability support staff and urban service staff, and favourable responses of bystanders. We argue that the multifaceted alignment that is required for the use of digitized services for people with intellectual disability creates high risk of exclusion as digital delivery is increasingly becoming the default mode for many services. Attention to moments of friction and alignment must be central in future thinking about inequality in digital geography.

Exploring the relative importance of factors that influence the job retention of social care staff working in intellectual disability services

Accessible summary We wanted to find out what would help care staff to stay in their jobs. The most important thing for them was getting on well with the person they supported. The next most important thing was their pay. These results can be used to find ways to help staff stay in their jobs. This is important to make sure that people with a learning disability get good support. AbstractBackgroundHigh staff turnover presents a challenge to the provision of good quality community‐based support to people with an intellectual disability. While recent research has identified factors that are thought to be important for staff retention, their relative importance to social care staff is unknown. The aim of this study was to address this gap.Methods205 social care staff who worked in intellectual disability services completed an online questionnaire that asked them to: rank factors that had been previously identified as influencing staff retention in order of importance; identify the extent to which their most important factor was met by their organisation (fulfilment score); and rate their recent job‐seeking intentions.FindingsThe most important factor overall was the relationship of the staff member with the person they supported. This was also identified as the most important factor by the most participants, followed by pay. All of the factors, with the exception of “benefits” (such as pensions), were rated by at least one person as the most important factor. A significant negative relationship was found between fulfilment score and job‐seeking score; that is, the lower the former, the more the person agreed that they had been seeking a new job.ConclusionThe results suggest that interventions to improve staff retention should take account of differences in staff views about which work‐related factors are most important to them; use multi‐component approaches where possible; prioritise staff pay; and help ensure that staff relationships with those they support are positive and fulfilling.

Promoting Resilience, Independence and Self-Management in Intellectual Disability Services

Promoting Resilience, Independence and Self-Management in Intellectual Disability Services

Comparing co-production approaches to dynamic risk assessments in a forensic intellectual disability population: outcomes of a clinical pilot

Purpose A co-produced clinical practice that aims to improve outcomes through a partnership with service users is becoming increasingly important in intellectual disability (ID) services, yet these approaches are under-evaluated in forensic settings. This study aims to explore and compare the feasibility of two approaches to co-production in the completion of dynamic risk assessments and management plans in a secure setting. Design/methodology/approach A convenience sample of adults admitted to a secure specialist forensic ID service (N = 54) completed the short dynamic risk scale (SDRS) and drafted risk management plans under one of two conditions. In the first condition, participants rated the SDRS and risk management plan first, separately from the multidisciplinary team (MDT). In the second condition, participants and MDTs rated the SDRS and risk management plan together. Findings In total, 35 (65%) participants rated their risk assessments and 25 (47%) completed their risk management plans. Participants who rated their risk assessments separately from the MDT were significantly more likely to complete the SDRS (p = 0.025) and draft their risk management plans (p = 0.003). When rated separately, MDT scorers recorded significantly higher total SDRS scores compared to participants (p = 0.009). A series of Mann-Whitney U tests revealed significant differences between MDT and participant ratings on questions that required greater skills in abstraction and social reasoning, as well as sexual behaviour and self-harm. Originality/value Detained participants with an ID will engage in their dynamic risk assessment and management plan processes. The study demonstrates the impact of different co-production methodologies on engagement and highlights areas for future research pertaining to co-production.

Developing a multiagency assessment pathway of Intellectual Disabilities: An education and health collaboration

Meeting the needs of young people with Intellectual Disabilities (ID) and their families is a key priority of the Scottish Government as outlined in The Keys to Life (2013) and Towards Transformation (2021) whereby a strategic change to universal and tiered services’ delivery is advocated. This article reflects on the drivers for change and need for the diagnosis and identification of ID, which prompted the multiagency collaboration of one local authority’s Psychological Services and Child and Adolescent Mental Health Service (CAMHS) ID service in a National Health Service (NHS) Health Board to design an ID assessment pathway.

Risk factors for in-patient admission among adults with intellectual disability and autism: investigation of electronic clinical records.

Adults with intellectual disability or autism are at risk of psychiatric admission which carries personal, social and economic costs. We identified 654 adults with intellectual disability or autism in the electronic clinical records of one mental health trust. We investigated the demographic and clinical factors associated with admission and readmission after discharge. Young male patients with intellectual disability, schizophrenia and previous admissions are most at risk of the former, whereas affective and personality disorders predict the latter. Both community intellectual disability services and mental health crisis care must focus on providing effective support for those patients.

Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK

AbstractBackgroundConsiderable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.MethodThis paper forms part of a larger cross‐sectional study of deaths in a defined population of adults with intellectual disabilities. Data from VOICES‐SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all.ResultsOnly 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death.ConclusionsRecognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

An audit of the well-being of staff working in intellectual disability settings in Ireland during the COVID-19 pandemic

PurposeThe severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) has infected millions of people worldwide. Individuals with intellectual disability are at a disproportionate risk of mortality, given the health inequalities they experience. This puts a significant burden of responsibility on staff who support these individuals. Consequently, this study aims to establish a baseline of the well-being of staff working in intellectual disability services in Ireland during the COVID-19 pandemic.Design/methodology/approachAn online survey was carried out using the Copenhagen Burnout Inventory, a brief measure of depression (Patient Health Questionnaire-9) and a brief measure of anxiety (General Anxiety Disorder-7).FindingsIn total, 285 staff in the Republic of Ireland completed the survey. These staff reported moderate levels of personal and work-related burnout and mild levels of anxiety and depression. Higher mean scores were recorded across scales from staff who worked in independent living settings and from staff who supported individuals with challenging behaviour.Originality/valueThis study, an audit, provides initial data on the well-being of staff working with individuals with intellectual disability in Ireland during the COVID-19 pandemic. It highlights that employers need to consider staff well-being, given the levels of personal and work-related burnout, and anxiety and depression that were found. This is particularly true for staff who work in independent living settings and with adults with challenging behaviour. Future research should focus on proactive strategies for improving staff well-being in the short term, given the current resurgence of COVID-19 in Ireland.

'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa.

Background: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them. Methods: We employed a qualitative research design and conducted semi-structured interviews to explore the views and perspectives of parents and caregivers of children with intellectual disability who are not using specialised hospital services. We developed an interview guide to help explore caregivers’ and parents’ views. Results: Results revealed that caregivers and parents of children with intellectual disability did not use the intellectual disability service due to financial difficulties, fragile care networks and opportunity costs, community stigma and lack of safety, lack of faith in services and powerlessness at effecting changes and self-stigmatisation. Conclusion: Current findings highlight a need for increased intervention at community level and collaboration with community-based projects to facilitate access to services, and engagement with broader issues of social exclusion.

Long-term outcomes following Fetal Alcohol Spectrum Disorder (FASD) diagnosis in adulthood

ABSTRACT Background Early diagnosis of Fetal Alcohol Spectrum Disorder (FASD) is known to improve outcomes in children. It is less clear if diagnosis in adulthood also conveys benefits. This study investigated long-term outcomes for individuals diagnosed with FASD after 18 years of age. Method Twenty adults aged 18–45 years at FASD diagnosis were interviewed. Pre-diagnosis information was compared to follow-up information gathered between 1 and 11 years later. Results Individuals reported high rates of mental health disorders (55%) and unemployment (85%). Pre-diagnosis, 10% received disability income and 15% were eligible for intellectual disability (ID) services. At follow-up, 90% received disability income and 85% were eligible for ID services. All (100%) enacted at least one assessment recommendation and 75% enacted two. Most (75%) reported having a diagnosis was beneficial, providing better adaptation and self-understanding. Conclusion An FASD diagnosis in adulthood can benefit individuals through more access to supports/services and greater personal understanding and adaptation.

Patterns of use of secondary mental health services before and during COVID-19 lockdown: observational study.

The coronavirus disease 2019 (COVID-19) pandemic has had a profound impact on both the physical and mental well-being of the global population. Relatively few studies have measured the impact of lockdown on utilisation of secondary mental health services in England. To describe secondary mental health service utilisation pre-lockdown and during lockdown within Leicestershire, UK, and the numbers of serious incidents during this time frame. Data pertaining to mental health referral and hospital admissions to adult mental health, child and adolescent mental health, intellectual disability and mental health services for older people were collated retrospectively from electronic records for both 8 weeks pre-lockdown and the first 8 weeks of lockdown in England. Serious incidents during this time frame were also analysed. Significantly (P < 0.05) reduced referrals to a diverse range of mental health services were observed during lockdown, including child and adolescent, adult, older people and intellectual disability services. Although admissions remained relatively stable before and during lockdown for several services, admissions to both acute adult and mental health services for older people were significantly (P < 0.05) reduced during lockdown. Numbers of serious incidents in the pre-lockdown and lockdown periods were similar, with 23 incidents pre-lockdown, compared with 20 incidents in lockdown. To the best of our knowledge, this is the first UK-based study reporting patterns of use of mental health services immediately prior to and during COVID-19 lockdown. Overall numbers of referrals and admissions reduced following commencement of COVID-19 lockdown. Potential reasons for these observations are discussed.

The use of an impact framework to evaluate the impact of research on policy and practice: Screening questionnaires for intellectual disability

Abstract There is an increasing emphasis on the importance of research having an impact on policy and practice. This can be more difficult to evidence in intellectual disability services because of the wide range of stakeholders involved. We evaluated whether an impact questionnaire covering: knowledge production, capacity building, informing policy and practice, social and economic benefits could successfully be used to evaluate the impact of research into and use of two screening questionnaires: the Learning Disability Screening Questionnaire (LDSQ) and Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q). We conducted an online search for published peer reviewed and grey literature, and Internet resources that referenced LDSQ and/or CAIDS-Q. The resultant literature and resources were assessed for relevance and organized according to the categories outlined in the impact questionnaire. Evidence was found for all the areas of impact, with the largest body of evidence being in relation to informing policy and practice and social benefits and the least for economic benefits. The impact questionnaire provided the basis for a comprehensive and useful evaluative framework to assess impact, although there was some overlap between the different categories. The process of using it highlighted some wider issues to consider when attempting to evaluate impact. The results indicated that the research underpinning the LDSQ and CAIDS-Q had resulted in significant, generally positive, and wide-reaching impact on policy and practice in intellectual disability and other services, resulting in a number of positive outcomes.

Experiences and needs of direct support staff working with people with intellectual disabilities during the COVID-19 pandemic: A thematic analysis.

BackgroundThe present study aimed to explore the experiences and needs of direct support staff during the initial stage of the COVID‐19 lockdown in the Netherlands.MethodOverall, eleven direct support staff were recruited from five intellectual disability services to participate in this descriptive qualitative study. They recorded 34 audio messages during the considered period. Thematic analysis was used to analyse these audio recordings.ResultsFour themes emerged: (1) Emotional impact, which pertained to various emotions they experienced in their work; (2) Cognitive impact, which referred to challenges and changes they had undergone in their work; (3) Practical impact, which centred on the practical impact of the pandemic on their work; and (4) Professional impact, which concerned their experiences with other professionals.ConclusionsThis study provides valuable insights into the experiences and needs of direct support staff during the COVID‐19 pandemic, which, in turn, can help inform practice in preparation for a second wave of COVID‐19 or another future pandemic.

Peripheral bone density measurement: An interdisciplinary initiative for improving health outcomes for people with learning disabilities.

Challenges exist in respect of people with intellectual disabilities who, with the increasing life expectancy, have a growing risk of age-related degenerative conditions. Changes in bone health are associated with increasing age and the bone health of people who have intellectual disabilities is well documented in the literature as being poor in comparison to the general population. A heel scan clinic was set up in an intellectual disability service as a service improvement initiative. There were 12 females and 17 males scanned using a heel scanner. Only 3 (10.3%) people with intellectual disabilities were in the normal bone mineral density (BMD) range. Peripheral BMD screening for people has been shown to provide important information about the bone health of people with intellectual disabilities which has prompted further treatment by general practitioners and has the potential to provide an accessible way to obtain information on the bone health of people with intellectual disabilities.

Interface between community intellectual disability and general adult psychiatry services

SUMMARYPeople with intellectual disability can have a range of common mental health difficulties that sit at the interface of two psychiatry subspecialties: intellectual disability and general adult psychiatry. Clinical presentations, comorbidities and complexities can affect the setting of boundaries between the two disciplines. This article touches on current concepts, drives for inclusion of people with intellectual disability in mainstream psychiatry services and some of the difficulties at the interface. It focuses on potential solutions for managing this interface between the two subspecialties.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

Population-based data are presented on the nature of dying in intellectual disability services. A retrospective survey was conducted over 18months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

Maximising engagement and participation of intellectual disability staff in research: Insights from conducting a UK-wide survey.

Aim:This article explores ways of maximising engagement of intellectual disability staff as research participants, research advisers and research implementers.Method:The authors describe and reflect on a three-phased strategy in recruiting front-line staff (n = 690) working for intellectual disability service providers (n = 25) to participate in a UK-wide anonymous online survey about death, dying and bereavement.Results:Important elements in engaging participants were: involving stakeholders at all stages of the research process, which includes: building relationships with participating organisations; enlisting organisational management support at all levels; an attractive and well laid-out collection tool; a well-structured recruitment strategy; time and flexibility; and a varied and targeted dissemination strategy. However, the recruitment method had limitations, in particular around representativeness, bias and generalisability.Conclusions:Staff in intellectual disability services can be enthusiastic and invaluable research participants. Active engagement between researchers, participating organisations and stakeholder groups is key to ensuring involvement of intellectual disability staff with research.

Seizure and Sudden Unexpected Death in Epilepsy (SUDEP) characteristics in an urban UK intellectual disability service

PurposeThis study identifies epilepsy-related characteristics and SUDEP risk factors in people with epilepsy (PWE) attending an urban community ID service in the UK where managing epilepsy is not part of the service remit, to understand the care provided to this vulnerable population. MethodsAn electronic database search in a north London community ID service (catchment population approx. 290,000) identified relevant ID/epilepsy characteristics in PWE to compare those with mild ID to moderate-profound ID. The SUDEP and Seizure Safety Checklist (“Checklist”), was administered to patients and families/carers. Risk management data was compared to similar data from Cornwall UK where PWE are supported within the ID service and the Checklist is used annually. ResultsOne fifth (137/697) of people attending the service had epilepsy. Over 3/4 had moderate-profound ID. Neurodevelopmental disorders were coexistent in 2/3, psychiatric conditions in 1/3 (1/4 of which was psychosis). The mean number of anti-seizure drugs was 1.45 ± 0.98, and 1/4 were taking psychotropic medications. Over a third did not have an epilepsy care plan. None contacted (n = 103) had SUDEP awareness. The median number of Checklist risk factors was seven (IQR 4.5–9). A third had experienced seizures lasting >5 min or status epilepticus. In comparison to the Cornish ID data significant differences were evident in four of seven modifiable risk factors. ConclusionsThis real world study highlights the complexity and risks among PWE and ID. The lack of a “joined up” approach can undermine the safety of this vulnerable population. Person-centred risk communication and care plans are easily achievable and essential.

Trauma-informed care in the context of intellectual and developmental disability services: Perceptions of service providers.

Traumatic life events have pervasive impacts on health and well-being. A growing body of literature shows that people with intellectual and developmental disabilities are disproportionately impacted by trauma. Trauma-informed care (TIC) is a philosophy of service provision that is committed to preventing traumatization and re-traumatization and promoting healing. This study explores the perceptions of 130 leaders in the field of intellectual and developmental disabilities services on the adoption and practice of TIC through the analysis of quantitative data. Results indicated a disconnect between the level of TIC integration and perceptions detailing how well organizations are currently performing in aspects of TIC. Barriers to TIC included high staff turnover, lack of accessible mental health providers, lack of affordable training, stigma, and restrictive funding structures. Implications and recommendations for service organizations and educators are provided.