Incorporating a Picture‐Based Book Into Routine Care for People With Epilepsy and Intellectual Disabilities: Perspectives From Patients, Carers and Clinicians

Supporting Religion and Spirituality to Enhance Quality of Life of People With Intellectual Disability: A Jewish Perspective

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The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.

Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Background and aimsPeople with intellectual disabilities are more likely to have epilepsy than the general population. A picture-based book, Getting on with Epilepsy, may help to improve their epilepsy management and quality of life. The present study aimed to explore how the book could be best used in routine clinical care. MethodsTwenty people with epilepsy and intellectual disabilities were video-recorded using the Getting on with Epilepsy book with a nurse or doctor. This was analysed using conversation analytic methods. Eighteen patients and five clinicians took part in interviews to explore their views on book use, which were thematically analysed. All data were then synthesised to form themes. ResultsThree themes were identified which demonstrated the importance of (1) understanding the book depicted seizures (2) relating the book to the participants’ experiences (3) using the book as an education and information tool. The themes highlighted the techniques and approaches that clinicians used to facilitate understanding. Some tensions and differences were noted between training and implementation in routine practice, particularly around prompts in themes 1 and 3 intended to correct or change participants’ interpretation of the book. ConclusionsThe Getting on with Epilepsy book can be used in routine clinical practice to support people with intellectual disabilities and epilepsy. There was a balance between exploring patients’ narratives and understanding with the need to convey clinical information, and this may also apply to the use of other accessible resources.

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities

BackgroundA considerable amount of research has been conducted on clinical decision making (CDM) in short-term physical conditions. However, there is a lack of knowledge on CDM and its outcome in long-term illnesses, especially in care for people with severe mental illness.Methods/DesignThe study entitled "Clinical decision making and outcome in routine care for people with severe mental illness" (CEDAR) is carried out in six European countries (Denmark, Germany, Hungary, Italy, Switzerland and UK). First, CEDAR establishes a methodology to assess CDM in people with severe mental illness. Specific instruments are developed (and psychometric properties established) to measure CDM style, key elements of CDM in routine care, as well as CDM involvement and satisfaction from patient and therapist perspectives. Second, these instruments are being put to use in a multi-national prospective observational study (bimonthly assessments during a one-year observation period; N = 560). This study investigates the immediate, short- and long-term effect of CDM on crucial dimensions of clinical outcome (symptom level, quality of life, needs) by taking into account significant variables moderating the relationship between CDM and outcome.DiscussionThe results of this study will make possible to delineate quality indicators of CDM, as well as to specify prime areas for further improvement. Ingredients of best practice in CDM in the routine care for people with severe mental illness will be extracted and recommendations formulated. With its explicit focus on the patient role in CDM, CEDAR will also contribute to strengthening the service user perspective. This project will substantially add to improving the practice of CDM in mental health care across Europe.Trial registerISRCTN75841675.

Changes in the Primary Diagnosis of Students With Intellectual or Developmental Disabilities Ages 6 to 21 Receiving Special Education Services 1999 to 2008

The first plenary session of 132nd Annual Meeting of the American Association on Intellectual and Developmental Disabilities (AAIDD) reflected its support for basic and applied research to prevent or minimize the effects of conditions causing developmental disabilities, with Dr. Alan Guttmacher (2008), currently the acting director of the National Human Genome Research Institute, discussing the realized and potential benefits of genomics research on health and quality of life. This presentation dealt with an incredibly complex topic with clarity and sensitivity, and it was carefully neutral in tone and content with respect to intellectual and developmental disabilities. Nevertheless, a major implication regarding disabilities in general and developmental disabilities more specifically was quite clear. Current research in genomics, as well as in many other areas, is intended to improve understanding of the fundamental causes of disability to reduce risk, thereby lowering incidence of impairments and minimizing their severity. Should these goals be realized, the proportion of the population with disability would decrease, perhaps dramatically, and in some distant future significant impairments might even be eliminated altogether. As unachievable as that ultimate goal might appear to be, an assumption supporting many of the programs and much of the research agenda in the field of developmental disabilities is that we, as a society and as individuals, would be better off if physical, mental, and cognitive impairments ceased to exist. Yet, prevention encompasses many things and can be viewed from many perspectives, some of which have continued to challenge the universality of this assumption. There is a need for serious and open discussion of the many aspects of prevention within our field (and the disabilities field more generally) that entails explicit consideration of risks and benefits of specific programs and approaches to implementation. Although important distinctions can and should be made among primary prevention (avoiding the occurrence of a causal condition), secondary prevention (avoiding or minimizing the consequences of a causal condition after it occurs), and tertiary prevention (minimizing or improving outcomes after the consequences of a causal condition are evident), this dialogue needs to begin with consideration of the overarching goal of lowering the incidence and prevalence of impairments and reducing disability. In many respects, prevention was embraced long ago as a valued societal benefit, and this has had significant impacts in the case of intellectual and developmental disabilities. Certainly, the history of prevention in our own field has included some policies and actions that had devastating consequences for people with intellectual and developmental disabilities, and careful and constant vigilance will always be required to ensure that the rights, privileges, and dignity of every individual are respected and preserved. Nevertheless, many other aspects of the past continue to be broadly viewed as enormously beneficial, and several examples seem particularly illustrative. Until the late 19th century, congenital hypothyroidism (cretinism) caused many individuals in western Europe to have intellectual disability. For some alpine regions, it was so common an occurrence that local physicians thought it unremarkable (Merke, 1984). We now know that this condition is caused by dietary iodine deficiency, and this discovery, along with the availability of iodized salt, has virtually eliminated it as a public health concern in industrialized countries. (Nevertheless, congenital hypothyroidism remains one of the most common preventable causes of intellectual impairment in many underdeveloped regions of the world; Jain, Agarwal, Deorari, & Paul, 2008.) Prior to the 1950s, babies born with phenylketonuria (PKU), a relatively rare genetic disorder, were unimpaired at birth but invariably developed severe intellectual disabilities. This was caused by their inability to metabolize phenylalanine, a INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 47, NUMBER 4: 320–322 | AUGUST 2009

Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities. An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the 'All Together Group') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers,and five healthcare professionals. The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) 'When I'm ill' thinking cards; (ii) 'Let's Talk About Funerals' conversation-starter pictures; and (iii) 'My funeral' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities. Through an iterative, flexible, inclusive,and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online. The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staffand health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations,and policymakers.

To evaluate outcomes after major surgery in children and adolescents with intellectual disability. We used 2004 to 2013 claims data from Taiwan's National Health Insurance programme to conduct a nested cohort study, which included 220292 surgical patients aged 6 to 17years. A propensity score matching procedure was used to select 2173 children with intellectual disability and 21730 children without intellectual disability for comparison. Logistic regression was used to calculate the adjusted odds ratios (ORs) and 95% confidence intervals (CIs) of the postoperative complications and 30-day mortality associated with intellectual disability. Children with intellectual disability had a higher risk of postoperative pneumonia (OR 2.16, 95% CI 1.48-3.15; p<0.001), sepsis (OR 1.67, 95% CI 1.28-2.18; p<0.001), and 30-day mortality (OR 2.04, 95% CI 1.05-3.93; p=0.013) compared with children without intellectual disability. Children with intellectual disability also had longer lengths of hospital stay (p<0.001) and higher medical expenditure (p<0.001) when compared with children with no intellectual disability. Children with intellectual disability experienced more complications and higher 30-day mortality after surgery when compared with children without intellectual disability. There is an urgent need to revise the protocols for the perioperative care of this specific population. Surgical patients with intellectual disability are at increased risk of postoperative pneumonia, sepsis, and 30-day mortality. Intellectual disability is associated with higher medical expenditure and increased length of stay in hospital after surgical procedures. The influence of intellectual disability on postoperative outcomes is consistent in both sexes and those aged 10 to 17 years. Low income and a history of fractures significantly impacts postoperative adverse events for patients with intellectual disability.

Hematological cancers have devastating effects on patients' physical, emotional, and psychosocial health. There is growing evidence to support the use of patient-reported outcome measures (PROMs) through validated tools. Although PROMs are widely adopted in oncology, uptake in hematology remains limited in routine clinical care. This review seeks to explore the utility of PROMs in routine hematology clinical practice and to understand the extent and type of evidence in relation to benefits of PROMs to patients. The review was conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic reviews and Meta-Analysis scoping review model for organizing information. Ten thousand and seventy-one articles were identified, 110 full texts were reviewed, and 14 articles met the final inclusion criteria. More than 20 individual outcome measures were identified that fell into the following categories: accessibility and usability, self-efficacy, shared decision-making, and implementation. Studies focused primarily on the choice of PROM, acceptability and usability, motivation for use, patient and healthcare professionals' experience of using PROMs, the stated value of PROMs, and implementation advice. However, there are limited published studies supporting how PROMs can be adopted into routine care for people with hematological cancer. There are various validated PROMs but limited research on how to meaningfully implement them to improve clinical and patient outcomes in the routine care of hematology patients.

Shields and Taylor1 make an important contribution to the literature on health care providers' attitudes toward people with disability. Research on attitudes toward people with disability, and particularly those with intellectual disability, is less common in rehabilitation professions (e.g., physical therapy, occupational therapy, speech language pathology) than in professions such as nursing and medicine. Addressing this gap, Shields and Taylor1 investigated whether contact with people with Down syndrome influenced attitudes toward disability among Australian physiotherapy students. Their findings have implications for how physiotherapy programmes can better prepare future graduates to work with people with disability. Intellectual disability is defined as “a disability that is characterized by significant limitations both in intellectual functioning and in adaptive behaviour, and originates before the age of 18”;2 it is almost always present in people with Down syndrome. In developed countries, an estimated 1% of the population has an intellectual disability.3 In Canada, people with intellectual disability have been moving from institutions to the community since the 1970s; surprisingly, this process is still not complete.4 While de-institutionalization has unquestionably improved quality of life for people with intellectual disability, they continue to have poorer health outcomes than the general population.5 One possible explanation for this is that their sometimes complex health care needs must now be addressed by community-based health care providers, who may not feel adequately prepared to work with them; this problem is accentuated when health care providers lack previous contact with this population.5 Shields and Taylor's findings1 confirm those of Vermeltfoort and colleagues,6 who found that while almost all the physiotherapy students they surveyed were willing to work with people with intellectual disability, only 50% felt well prepared to do so. Encouragingly, Shields and Taylor's randomized trial (a design not used often enough in studying the effectiveness of interventions in this population7) also shows that contact with people with Down syndrome in community settings leads to increased levels of comfort and confidence in working with people with disability.1 In Ontario, however, only half of physiotherapy students have opportunities to interact with people with intellectual disability during their training.6 This is a gap that physiotherapy programmes need to address. Physiotherapy students should graduate feeling confident in their ability to work with people with intellectual and other types of lifelong disabilities, and they should appreciate our profession's role in treating them throughout their lives. Shields and Taylor1 cite evidence that employers have highlighted a lack of disability experience among physiotherapy graduates.8 It is troubling to note that in a profession that purports to rehabilitate “injury and the effects of disease or disability,”9(p.2) graduates do not feel confident in their ability to work with people with lifelong disability. People with intellectual and other lifelong disabilities already encounter enough barriers to accessing health care that meets their needs; rehabilitation professionals who feel uncomfortable or have negative attitudes should not be one of them. Addressing this issue may become even more important in the future, as physiotherapists will increasingly come into contact with people with intellectual disability. The prevalence of comorbidities is high among people with intellectual disability, and a growing proportion of this population is experiencing the same age-related health concerns as the general population. They are likely to require additional health care services, including those provided by physiotherapists. One example is fall-prevention services and post-fracture care: a recently published atlas of primary care for people with intellectual disability showed very high levels of low-trauma fractures (i.e., fractures from low-impact events such as falls) across all age groups.10 A key point is Shields and Taylor's assertion that “service learning pedagogy has been under-used in physiotherapy education.”1 They also note that “alternative service learning experiences would complement rather than replace traditional clinical learning experiences.”1 Their study demonstrates that attitudes toward disability can change in a relatively short time;1 a potentially ideal opportunity for physiotherapy students to gain experience with this population, therefore, is through participation in FUNfitness events organized by Special Olympics.11 Physiotherapy students have shown that they are willing to work with people with intellectual disability and that their attitudes can improve through contact with this population; therefore, physiotherapy programmes should seek out and encourage service learning opportunities.

People with intellectual disability experience poorer health outcomes compared with the general population, partly due to the difficulties of accessing preventive care in primary care settings. There is good evidence that structured annual health assessments can enhance quality of care for people with intellectual disability, and their use has become recommended policy in several high-income countries. However, uptake remains low. The Theoretical Domains Framework (TDF) offers a conceptual structure for understanding barriers to implementation and has been usefully applied to inform implementation of health assessments for other high-need groups, but not for people with intellectual disability. We conducted a scoping review of the literature, using the TDF, to identify barriers and facilitators influencing primary care practitioners' implementation of annual health assessments for people with intellectual disability as part of routine primary care practice. This study was conducted according to the JBI methodological approach for scoping reviews. Searches were conducted in Medline (OVID-SP), Embase (OVID-SP), PsycINFO (OVID-SP), CINHAL (EBSCO), Scopus (Elsevier) and Web of Science (Clarivate) for relevant peer-reviewed publications up to May 2023. Screening, full-text review and data extraction were completed by two independent reviewers. Data were extracted and mapped to the TDF to identify relevant barriers and facilitators. The search yielded 1057 publications, with 21 meeting the inclusion criteria. Mapping data to the TDF, the most frequently identified domains were (a) environmental context and resources, (b) skills, (c) knowledge and (d) emotion. Predominant factors impacting on implementation included practitioners' lack of awareness about health assessments and their identified benefits; inadequate training and experience by practitioners in the delivery of health assessments for people with intellectual disability; insufficient time to provide health assessments; and practitioner burnout. Using a theory-informed behavioural framework, our review aids understanding of the barriers and facilitators to improving the implementation of health assessments as part of routine care for people with intellectual disability. However, there is a clear need for further qualitative research to examine the perceptions of primary care practitioners regarding implementation barriers and facilitators to health assessments in general, including views from practitioners who are not currently undertaking health assessments.