Pay Attention to Hypertension (PAtH): Findings from a cardiovascular health promotion intervention for adults with intellectual disabilities participating in Special Olympics programming.

BACKGROUND: Cardiovascular disease (CVD) affects adults globally. People with intellectual disabilities (PWID) may be at higher risk of CVD and associated risk factors (e.g. obesity, hypertension, and diabetes). We developed Pay Attention to Hypertension (PAtH), a cardiovascular health promotion intervention, and tested its impact on changes in blood pressure (BP), lifestyle behaviours and health-related empowerment among PWID. METHODS: PAtH was developed with a Special Olympics community organisation that supports PWID in developing self-confidence and social skills through participation in sports. The 6-month intervention consisted of 1-h individualised virtual sessions delivered monthly by nursing students/novice nurses. Sessions covered specific themes, including monitoring BP, adopting healthy lifestyles and managing stress, and were individually tailored to the capacities and needs of participants. A single group pre-post-intervention design was used to assess the intervention's effects among participants who completed the intervention and data collection. Data included baseline and follow-up BP measurements from 7-day logbooks and questionnaires assessing lifestyle behaviours [physical activity (PA), screen time and diet], and health-related empowerment. RESULTS: Seventy-four participants were included in the analyses. Between baseline and follow-up, there were no changes in systolic and diastolic BP, PA or leisure screen time. The proportion of participants who reported adding salt when cooking decreased from baseline to follow-up (19.7% vs. 12.7%, P = 0.034), and we found improvements for several items measuring health-related empowerment (P ≤ 0.003). CONCLUSION: Improvements in health-related empowerment were found following PAtH. More intensive interventions may be needed to result in changes in lifestyle behaviours and BP. The integration of adapted cardiovascular health promotion initiatives within well-established community organisations such as Special Olympics is a promising avenue to contribute to cardiovascular health promotion among PWID.

Reflections on an Evidence Review Process to Inform the Co-Design of a Toolkit for Supporting End-of-Life Care Planning With People With Intellectual Disabilities.

INTRODUCTION: There is growing recognition that healthcare inequalities faced by people with intellectual disabilities extend to their experiences at the end of life, resulting in calls for more inclusive research to help address these inequities. Our study aimed to address this through the co-design of a toolkit for supporting end-of-life care planning with people with intellectual disabilities. To inform the co-design process, we undertook an evidence review to identify existing tools, resources and approaches that were already being used in practice. METHODS: Our evidence review comprised three components: (i) a rapid scoping review of the academic literature, (ii) a desk-based search of the grey literature and (iii) an online survey to capture unpublished resources that were distributed to services, professionals, third-sector organisations and family members. A longlist of existing materials was appraised using an adapted version of the AGREE II instrument, resulting in a shortlist that was shared with the co-design team. RESULTS: The evidence review played a critical role in the co-design of a new toolkit of end-of-life care resources for people with intellectual disabilities. However, AGREE II proved to be limited for our purposes. CONCLUSIONS: The survey was particularly useful in helping us identify resources, tools and approaches in current use. We identified evidence review processes that served to support co-design team activities and elements that were more problematic. We argue that evidence review practices might be enhanced to better aid co-design activities in health and care research, particularly for studies involving people with intellectual disabilities. PATIENT OR PUBLIC CONTRIBUTION: This article reflects on an evidence review that was conducted as part of The Victoria and Stuart Project. People with intellectual disabilities were deeply involved at every stage of project design, delivery and dissemination. The project employed people with intellectual disabilities as members of the core research team. People with intellectual disabilities and family carers were members of the project co-design team and the project Advisory Group. The evidence review process itself was led by academic members of the research team with contributions from colleagues with intellectual disabilities via the Advisory Group and core research team. The findings from the evidence review were used by the co-design team to inform the development of an end-of-life care planning toolkit for people with intellectual disabilities.

Discovering the Current 'State of Play' in Pain Recognition and Assessment for People With Profound Intellectual Disabilities by Nurses: An Appreciative Inquiry Approach.

BACKGROUND: Pain recognition and assessment in individuals with profound intellectual disabilities are challenging. Exploring effective methods of addressing this is essential. This study aims to discover current nursing practice in this area of care as the first of a four-phased appreciative inquiry study, to inform further research and practice. METHODS: Data from individual and focus group interviews with co-researching nurses were collated and developed into themes. RESULTS: Six themes were identified: unconditional positive regard, honouring of relationship, creative best practice, pain through a competing lens, accurate assessment-an impossible task? Medicating pain-oversimplified and undervalued? CONCLUSION: Relationship is essential, in recognising pain and distress. There is an understanding of the multifaceted nature of pain in the care of this population; however, physical pain recognition and assessment are prioritised, to prevent serious ill health and death. Formal methods of assessment and communication between professionals are needed.

Navigating Unique Intersectional Experiences: LGBTQ+ Community Organisations Addressing Individuals With Intellectual Disabilities' Needs.

BACKGROUND: This exploratory study aimed to enhance the understanding of practitioners' experiences within LGBTQ+ community organisations when providing interventions for LGBTQ+ individuals with intellectual disabilities. Three specific objectives were outlined: to document the situations and challenges encountered by practitioners; to identify perceived needs among LGBTQ+ individuals with intellectual disabilities and to elicit their suggestions for recommendations to improve services. METHOD: A qualitative approach, involving in-depth interviews with 12 Québec-based LGBTQ+ community practitioners, underwent content analysis. RESULTS: Findings were organised around three themes: perceived support needs of LGBTQ+ people with intellectual disabilities; challenges experienced in intervention and recommendations to improve services. Findings reveal that practitioners frequently face significant challenges when supporting LGBTQ+ individuals with intellectual disabilities, who often struggle with multiple daily challenges and insufficient support. CONCLUSIONS: The study highlights the need to empower LGBTQ+ organisations with essential skills and foster partnerships with public service staff to ensure a more inclusive, intersectional approach.

(Not) Going Out and Barriers to Leaving the House for People With Intellectual Disabilities Through the COVID-19 Pandemic in the UK.

BACKGROUND: People with intellectual disabilities commonly experience multiple barriers to 'going out'. AIMS: This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID-19 pandemic progressed. METHODS: Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID-19 pandemic in the United Kingdom. FINDINGS: The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. CONCLUSION: A combination of factors restricted the extent to which people were going out even after COVID-19 protections were lifted.

A thin line between consent and abuse - Reflections on sexual experiences among Swedish young adults with intellectual disabilities.

Research shows that young adults with intellectual disabilities struggle to understand the social codes embedded in sexual situations. This may lead to an incomprehension of sexual consent, or when consenting to sex may lead to abuse. This qualitative study aimed to gain an in-depth understanding of sexual experiences and perceptions about sexual consent among Swedish young adults with intellectual disabilities. The data comprise 22 semi-structured interviews with young adults aged 18-35 with intellectual disabilities, thematically analyzed using sexual script theory as a theoretical framework. Four themes emerged from the analysis: Setting the sexual scene, Sexual self-awareness, Sexual communication and the necessity of clarification and Striving for a balance. The results show that the participants had a variety of sexual experiences and challenges associated with sexual consent, but also an agency that favors sexual situations. Further research is necessary to understand the complexities of sexual consent in this population.

Longitudinal Incidence of Kidney/Urinary Stones in Individuals With Severe Motor and Intellectual Disabilities.

OBJECTIVE AND RATIONALE: To investigate the longitudinal incidence of kidney/urinary stones in patients with severe motor and intellectual disabilities and explore health burden events in patients with stone formation. METHODS: This was a retrospective, observational study. We identified patients with severe motor and intellectual disabilities who had the following: 1) admission to our hospital wards for >10 years; 2) two or more assessments for stone formation by ultrasonography or computed tomography; and 3) absence of kidney/urinary stones in the first imaging study. The Kaplan-Meier method was used to analyze the cumulative incidence of kidney/urinary stones. Recurrent urinary tract infections, hydronephrosis, renal dysfunction, and death were identified as health burdens. RESULTS: Among the 41 patients (19 men, 22 women; median age, 28 years; range, 8-50 years), stone formation was detected in 11 (27%) patients during the observation period. The cumulative incidence rate of stone formation was 9.8% (95% confidence interval, 3.8-23.9) and 18.7% (95% confidence interval, 9.2-35.7) at five and 10 years, respectively. Death was frequently observed in patients with stone formation; six (55%) of the 11 patients with stone formation died during the follow-up period; two (15%) died among the other 30 patients without stone formation. However, only one patient with stone formation died in a renal event; the causal relationship between the stone formation and the deaths was not clarified. CONCLUSION: The longitudinal incidence of kidney/urinary stones was higher in patients with severe motor and intellectual disabilities than in the general population. Considering the difficulty of patients with severe motor and intellectual disabilities in conveying their symptoms, regular assessment of the kidney using abdominal imaging may be recommended.

Co-construction of an instructional module to improve the understanding of cancer screening by people with intellectual disabilities: Strategic choices.

OBJECTIVE: People with intellectual disabilities (ID) have difficulty in accessing oral or written health information presented in a conventional manner what compromises prevention. This study aims to develop accessible information on breast, cervical and colorectal cancer screening for people with ID. METHOD: The instructional material has been developed collaboratively by a team involving representatives from different scientific disciplines (medical and psychoeducational) and people with ID. Five principles guided its elaboration, i.e. coconstruction, multimodality, phasing, socio-cognitivism and accessibility. RESULTS: The material created is a 5-component module including a 20-minute easy-toread and understand oral presentation with a slideshow, a workshop that encourages manipulation and discussion, a booklet to take away, a film to consolidate information and a questionnaire. CONCLUSION: Providing accessible information is considered a key action in reestablishing equality in access to cancer health care and preventing a cascade of consequences. The co-construction of the module ensures its social and ecological validity. An interventional study is underway to verify its efficacy. PRACTICAL IMPLICATION: The best practices for cancer prevention endorse spending enough time to discuss screening. This accessible module can be used to provide people with ID basic information about screening, increase their adherence, and facilitate the discussion on this issue.

Comparing self-report medication data from a longitudinal study on intellectual disability and national dispensing records.

BACKGROUND: Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self-report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources of medication data of older adults with intellectual disability (ID). METHODS: Self-report medication data were gathered from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and linked to national pharmacy dispensing records. The kappa statistic was used to measure agreement between the two data sources for psychotropic medication. RESULTS: The lowest agreement level was 'moderate' for the number of anxiolytics reported (kappa 0.56). The highest level of agreement was 'almost perfect' for the binary variable of antipsychotics (kappa 0.91). Other agreement results were 'substantial' or 'almost perfect'. CONCLUSIONS: Good agreement was found between the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing medication dataset and national dispensing records. Self-report medication data appear to be a valid method of data collection in psychotropic medication use in adults with ID.

Assessing teachers' beliefs and practices regarding vocational rehabilitation services for individuals with intellectual disabilities.

This study investigates UAE teachers' beliefs and practices regarding vocational rehabilitation (VR) services for individuals with intellectual disabilities. The study used a descriptive survey methodology with a 30-item Likert scale questionnaire. The sample size consisted of 121 VR teachers in the Emirate of Abu Dhabi. The data was analyzed using Fisher's exact test and the Chi-square test. Male teachers (P<0.0063) and diploma in special education holders (P<0.0272) were significantly good at career counseling, while female teachers and bachelor's in education degree holders were good at vocational training (P<0.0039 and P<0.0001, respectively) and placement (P<0.0006 and P<0.001). Educators with 1-5 and 6-10 years of experience had more positive beliefs and practices than their more experienced counterparts in terms of VR services. VR instructors have an important role in improving the results and opportunities for people with intellectual disabilities, and their empowerment and professional development should be endorsed.

Autism and psychopathology - prevalence, identification, and symptoms equivalence: study protocol.

Objective: Despite increasing evidence of high psychopathological vulnerability in people with Autism Spectrum Disorder (ASD) and/or Intellectual disability (ID), comprehensive data on prevalence and presentation of psychiatric disorders (PD) in people with significant cognitive and communication impairment are lacking. The extent to which PD can present with behavioral/observable symptoms and include Problem Behaviors (PB) has also been scarcely evaluated through population-based studies. The paper presents the protocol of a cross-sectional study aimed at filling these gaps, referred to a large multicentric Italian population-based sample of adolescents and adults. Methods: A battery of validated scales, SPAIDD, DASH-II, DiBAS-R, and STA-DI, is used to support and control for clinical diagnoses of PD. Study population is stratified according to different independent variables such as the severity of ID and ASD, gender, age group, and source of recruitment. A network analysis will be carried out to identify the most central behavioral symptoms for the various PD and their relationship with PB. Overlap between psychiatric symptoms and ASD and ID phenotypes is also addressed. Results and Conclusion: This study should provide valuable insight into better diagnostic accuracy, leading to well-informed interventions to improve the quality of life of people with ASD and/or ID.

Clinical Profile of Neurodevelopmental Disorders in Children at a Tertiary Care Center.

Background Neurodevelopmental disorders (NDDs) encompass intricate interactions among genetic, brain, cognitive, emotional, and behavioral processes. These disorders, which are influenced by hereditary and environmental factors, impair personal, social, intellectual, or occupational functioning. Typically emerging early in life, NDDs include conditions such as attention deficit hyperactivity disorder (ADHD), intellectual disability, autism spectrum disorders (ASDs), vision and hearing impairments, motor disorders, and specific learning disabilities. Children from impoverished and low-income neighborhoods are particularly vulnerable. The lack of comprehensive health data and public awareness about these conditions results in limited information regarding the prevalence of neurological illnesses in developing countries. India, with its large and ethnically diverse population, exemplifies this gap. Methods It is a prospective study to detect the prevalence and risk factors of neurodevelopmental disorders in children aged six months to nine years at a tertiary care center. Patient details, clinical findings, and relevant history were recorded on a pre-designed pro forma and analyzed statistically. Results Among the 1000 children in the study, 91 (9.1%) tested positive for NDDs. Among the 91 children who tested positive for NDD, the highest frequency is in the three to four years age group (17.6%), males were found to be in a higher ratio with 75.82%, with the male: female ratio being 3:1. Among the 91 children with NDD, intellectual disability was the most common disorder (20.9%), followed by ADHD (17.6%) and vision impairment (14.3%). Autism spectrum disorders, including autism and Asperger syndrome, and communication disorders, including stuttering and speech disorders, accounted for 13.2% each. Hearing loss was seen in 9.9% of children and multiple disorders were seen in 8.8% of the children from among 91 children. Conclusion Neurodevelopmental disorders are common and often coexist with other conditions. Children from low-income backgrounds are more affected. This study provides valuable insights into the prevalence and characteristics of NDDs in a specific population.

Using a Capability Approach to Explore How People With Intellectual Disabilities Can Lead Flourishing Lives.

BACKGROUND: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. METHODS: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis. RESULTS: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub-themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'. CONCLUSION: People with intellectual disabilities can lead capability-deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives.

Learning for life, friendships and relationships from the perspective of children and young people with intellectual disabilities: findings from a UK wide qualitative study.

BACKGROUND: Relationships and sexuality education (RSE) programmes are widely taught in schools, however for children and young people with intellectual disabilities, these programmes appear to be limited regarding information on relationships, informed choices and decision making. The purpose of this study was to seek the views and understanding of children and young people with intellectual disabilities, and those involved in their care and education, to identify best practice and approaches to the delivery on relationships and sexuality education. METHODS: This study used a qualitative design with 37 pupils from five special schools from across the United Kingdom (UK) participating. In-depth semi-structured interviews were held online, or in person. All interviews were recorded and transcribed verbatim. Transcripts were anonymised, assigned a pseudonym and subjected to inductive thematic analysis. FINDINGS: Four themes emerged from the data: (i) enthusiasm and inquisitiveness to acquire knowledge; (ii) dynamics of positive friendships; (iii) experiences and understanding of supportive relationships and sexuality; and (iv) valuing the exchange of knowledge and information. The findings highlight that children and young people with intellectual disabilities want education, support and information on matters relating to their relationships and sexuality. CONCLUSIONS: This is the largest study to date providing a voice to children and young people with intellectual disabilities regarding their relationships and sexuality. While special schools provide relationships and sexuality education, there is a requirement for a programme and resources specific to the needs of pupils with intellectual disabilities to be developed and evaluated. Such education should continue beyond school and be embedded in adult services.

Where do neurodevelopmental conditions fit in transdiagnostic psychiatric frameworks? Incorporating a new neurodevelopmental spectrum.

Features of autism spectrum disorder, attention-deficit/hyperactivity disorder, learning disorders, intellectual disabilities, and communication and motor disorders usually emerge early in life and are associated with atypical neurodevelopment. These "neurodevelopmental conditions" are grouped together in the DSM-5 and ICD-11 to reflect their shared characteristics. Yet, reliance on categorical diagnoses poses significant challenges in both research and clinical settings (e.g., high co-occurrence, arbitrary diagnostic boundaries, high within-disorder heterogeneity). Taking a transdiagnostic dimensional approach provides a useful alternative for addressing these limitations, accounting for shared underpinnings across neurodevelopmental conditions, and characterizing their common co-occurrence and developmental continuity with other psychiatric conditions. Neurodevelopmental features have not been adequately considered in transdiagnostic psychiatric frameworks, although this would have fundamental implications for research and clinical practices. Growing evidence from studies on the structure of neurodevelopmental and other psychiatric conditions indicates that features of neurodevelopmental conditions cluster together, delineating a "neurodevelopmental spectrum" ranging from normative to impairing profiles. Studies on shared genetic underpinnings, overlapping cognitive and neural profiles, and similar developmental course and efficacy of support/treatment strategies indicate the validity of this neurodevelopmental spectrum. Further, characterizing this spectrum alongside other psychiatric dimensions has clinical utility, as it provides a fuller view of an individual's needs and strengths, and greater prognostic utility than diagnostic categories. Based on this compelling body of evidence, we argue that incorporating a new neurodevelopmental spectrum into transdiagnostic frameworks has considerable potential for transforming our understanding, classification, assessment, and clinical practices around neurodevelopmental and other psychiatric conditions.

Assessing the effectiveness of menstrual health education in Japan: A non-randomized comparative study of adolescent girls with typical development and those with intellectual disabilities and high support needs.

This study elucidates the effectiveness of a menstrual education program with segmented MHM procedure on the MHM skills of girls with intellectual disabilities/HSN compared with those with typical development. Participants in a nonrandomized comparative study included nine adolescent girls with intellectual disabilities/HSN and ten with typical development. They practiced MHM on dolls three times: before, immediately after, and three months after participating in the educational program. Although the total MHM scores were significantly higher after both groups attended the program, the girls with intellectual disabilities/HSN had significantly lower total and mean scores on MHM items than girls with typical development. They still required instruction on the majority of the items after 3 months. Meanwhile, girls with intellectual disabilities/HSN showed a significant improvement in napkin changing skills and maintained post-course scores 3 months later, similar to those with typical development.

How differentiated can a new tablet-based reading screening measure the reading proficiency of students with intellectual disabilities? Comparing the impact of disability, disability type and grade level on reading skills.

All people have the right to learn reading. Understanding the factors influencing reading proficiency among students with intellectual disabilities is important for developing effective instructions. To accurately assess reading, suitable assessments that can effectively differentiate between low performance levels are necessary. We analyse results of 400 students (43 students with intellectual disabilities) in a digital reading screening and investigate the influence of disability severity, grade level and special educational needs status on the reading abilities of students with intellectual disabilities. The results indicate that the screening is suitable for assessing students with intellectual disabilities. A newly developed digital screening test for flash reading measures reliably. All presumed factors significantly impact the reading proficiency. However, substantial overlap exists between students with intellectual disabilities and those with other special needs. The necessity for structured reading interventions, irrespective of the disability label, and the importance of appropriate assessments for all students are discussed.

Effects of visual and auditory cognitive tasks on postural balance in adolescents with intellectual disability: A comparative analysis of trained versus non-trained individuals.

This study aimed to investigate the influence of visual and auditory cognitive tasks on postural balance in adolescents with intellectual disabilities (ID). Participants included two groups: a trained group (n = 11) with experience in athletic activities and a sedentary group (n = 14). The experiment used a comparative cross-sectional design, with data collection involving single-task (ST) and Visual dual-task (VDT), and auditory dual-task (ADT) conditions in both firm and foam surface conditions. Cognitive tests included the Working Memory Test (WMT) and the Selective Attention Test (SAT). Results revealed that the trained group demonstrated significantly superior balance performance (p < 0.05). During the SAT, VDT conditions had lower center of pressure (CoP) values than ADT conditions in the sedentary group (p < 0.01), this result was observed in the training group only in the WMT, suggesting greater postural instability during ADT. These findings highlight the complex relationship between cognitive function and motor control in adolescents with ID, highlighting the potential benefits of regular physical activity interventions to improve postural balance abilities in this population.

IDcare - a longitudinal register study of pre-pandemic and pandemic health care utilization and diagnostic profiles among people with intellectual disabilities in southern Sweden.

The aim of the creation of this cohort was to investigate patterns of health and health care utilisation before and during the COVID-19 pandemic, overall and in relation to specific diagnoses, among people with intellectual disabilities (ID) compared to the general population. People living in Skåne, the southernmost region of Sweden, on 1st of January 2014 with at least one diagnosis of ID (ICD-10 codes F70-F79) or Down syndrome (DS; Q90), or support and/or services according to the LSS act comprised the ID cohort (n = 14 716). People living in the same family and/or household as a person in the ID cohort constituted the ID family cohort (n = 31 688), and those remaining comprised the general population cohort (gPop; n = 1 226 955). Data has been collected for all three cohorts from several national and regional registers. These include registers for health care (2014-2021), deaths (2014-2021), COVID-19-related health care (vaccinations, intensive care, palliative care, 2020-2021). The prevalence of ID was 1.2%. In the ID cohort, 77.9% had at least one measure of support, 5.8% at least one Q90-diagnosis and 63.8% had at least one F7-diagnosis (26.9% mild (F70), 7.4% moderate (F71), 2.8% severe (F72), 1.4% profound (F73), and 25.4% other/unknown (F78/F79)). Compared to the gPop there were more people in the younger age groups in the ID cohort. At this point, no additional collection of data will be carried out. However, there is a possibility to add data from the registers to include years after 2021 or from additional registers. Future publications will explore relevant research questions and report key findings in relation to health among people with ID. Future results will be used to inform policy and practice on people with ID.

Exploring the experience of working relationships for support workers of adults with intellectual disabilities.

BACKGROUND: Research suggests that a better awareness of how staff who directly support people with intellectual disabilities experience their working relationships, will contribute to understanding staff wellbeing and the quality of care they offer. This study aimed to gain insights into the lived experiences of support workers in supported living services in England. METHOD: Six support workers participated in semi-structured interviews, about their working relationships with service-users and colleagues. Data was analysed using interpretative phenomenological analysis. RESULTS: Six interconnected themes emerged: The essence of good relationships; a trusting relationship as the vehicle for meeting service-users' needs; belonging to the support team; the organisational context of relationships; the social context of relationships; 'a fine balancing act'. CONCLUSIONS: The findings provide insights into staff wellbeing, indicating that developing supportive, trusting relationships with both service-users and colleagues, plays an important role in delivering effective care. Potential implications for service providers are discussed.