The Recruitment and Retention of Individuals With Intellectual Disability in Randomized Controlled Trials: A Scoping Review

Oral hygiene interventions for people with intellectual disabilities.

The future for research in intellectual disabilities

Children with intellectual and developmental disabilities are at a higher risk of developing dental caries. Few scoping reviews have been conducted in India to understand their issues. We aimed to summarise the distribution and risk factors of dental caries among children and adolescents with intellectual disabilities in India. A scoping review was conducted based on the Arksey O Malley framework. Quality assessment of studies, descriptive and thematic analyses were also conducted. We charted, collated, and summarised from four databases. Thirty-one studies met the study criteria consisting of children and adolescents with intellectual disabilities. Median caries prevalence was 70%, decayed missing and fIlled permenant teeth (DMFT) was 2.4, decayed missing and filled decidous teeth (dmft) was 2.36, and DMFS was 3.7. Major determinants were the severity of disability, socioeconomic status and parents' education. Oral care and dental visits were inadequate. Further exploration is required to improve access and reduce caries experience and prevalence among children with intellectual and developmental disabilities in India.

Abstract

To describe the prevalence of cerebral palsy (CP), subtype distribution, motor and intellectual impairment, and epilepsy in adults with CP compared with children with CP. CP subtype and impairment data from the population-based CP register of western Sweden and population data from Statistics Sweden were used to compare surviving adults (n=581; 244 females, 337 males) born between 1959 and 1978, with the same cohort as children (n=723; 307 females, 416 males), andwiththe most recent cohort, born from 2007 to 2010 (n=205; 84 females, 121 males). Prevalence of CP in adults born between 1959 and 1978 was 1.14 per 1000. The occurrence of impairments differed between CP subtypes. Motor and intellectual impairment were closely related, regardless of subtype. Subtype distribution among survivors differed significantly from the original cohorts (p=0.002), and the most recent cohort (p<0.01), tetraplegia and dyskinetic CP being less common in survivors. Severe motor impairment, intellectual disability, and epilepsy were less common among survivors than in the original cohorts (p=0.004, p=0.002, p=0.037) and the most recent cohort (p=0.004, p=0.008, p<0.01). Data on prevalence, subtype distribution, and impairments in children with CP are not applicable to adults with CP. Population-based studies of adults with CP are needed. Cerebral palsy (CP) subtypes are differently distributed in adults compared to children. The prevalence of impairments in adults with CP is related to CP subtype. Spastic tetraplegia and dyskinetic CP are less common in adults than children. Severe motor impairment, intellectual disability, and epilepsy are less common in adults.

Cognitive reserve (CR) has not been studied in people with Intellectual Developmental Disability, a population with a high incidence of dementia. Commonly adopted CR proxies should be adapted to reflect more specifically the experiences of people with Intellectual Developmental Disability. This scoping review intended to identify CR proxies relevant to people with this condition. Some of these were the same already detected in a population without intellectual disabilities (education, occupation, physical activity, leisure, community and social activities); others were found to be specifically relevant for this population: type of schooling, parental educational level, environmental stimulation and living place. These proxies need to be considered in studies on CR and Intellectual Developmental Disability and in clinical practice. Research on the protective effect of CR aims to encourage policies promoting lifestyle-based educational and preventive interventions and overcome participation barriers for people with Intellectual Developmental Disability.

Significant health disparities exist among American Indian and Alaska Natives (AI/ANs), yet AI/ANs are substantially underrepresented within health-related research, including randomized controlled trials (RCTs). Although research has previously charted representation inequities, there is however a gap in the literature documenting best practice for recruitment techniques of AI/ANs into RCTs. Therefore, the aim of this review was to systematically gather and analyze the published literature to identify common strategies for AI/AN participant recruitment for RCTs in the US. A scoping review methodology was engaged with a systematic search operationalized within relevant databases to February 19, 2022, with an additional updated search being carried out up until January 1, 2023: PubMed, Embase, Web of Science, PsycINFO, CINAHL, and Google Scholar. A two-stage article review process was engaged with double reviewers using Covidence review software. Content analysis was then carried out within the included articles by two reviewers using NVivo software to identify common categories within the data on the topic area. Our review identified forty-one relevant articles with the main categories of recruitment strategies being: 1) recruitment methods for AI/ANs into RCTs (passive advertising recruitment approaches, individual-level recruitment approaches, relational methods of recruitment); 2) recruitment personnel used within RCTs; and, 3) relevant recruitment setting. The majority of the included studies used a culturally relevant intervention, as well as a community-involved approach to operationalizing the research. Increasing AI/AN representation in RCTs is essential for generating evidence-based interventions that effectively address health disparities and improve health outcomes. Researchers and funding agencies should prioritize the engagement, inclusion, and leadership of AI/AN communities throughout the RCT research process. This includes early community involvement in study design, implementation of culturally tailored recruitment strategies, and dissemination of research findings in formats accessible to AI/AN communities.

Affordability of Family Care for an Individual With Intellectual and Developmental Disabilities

BackgroundRandomised controlled trials (RCTs) are the gold standard of evidence-based practice in medicine but they have had limited influence in the field of intellectual disabilities. Previous literature suggests that participants and professionals have limited tolerance for this type of research methodology. However, it is not known how well service users, carers and other health professionals understand and accept the need for RCTs, and why it is important for individuals with intellectual disabilities to be included in this kind of research.MethodsWe examined individual perceptions of RCTs in 51 participants (18 carers, 6 service users and 27 professionals) using semi-structured interviews. A framework approach was adopted in the analysis of data.ResultsWe found that participants had concerns about capacity and resource allocation but held positive views towards this type of research methodology. Understanding of the principles behind RCTs was poor amongst service users and a minority of carers, but mediated by previous exposure to research for professionals.ConclusionsThe social validity of RCTs in intellectual disabilities may be compromised by lack of understanding of the design and the on-going concerns about obtaining informed consent especially in incapacitated adults. However, the overall finding that the need for this form of research was seen in a positive light suggests that there is a turning point in the perceptions of stakeholders working in intellectual disabilities services. We recommend that researchers include on-going education on RCT design during trials, tailoring it to all stakeholders with emphasis on strong service user and care involvement. This could be a pivotal element in improving acceptability of, and recruitment to RCTs.

The need for evidence-based health promotion interventions for women with intellectual and developmental disabilities is critical. However, significant barriers impede them from participating in research, including those related to recruitment and obtaining informed consent. This study describes a procedure for the recruitment and consent of women with intellectual disabilities into a community-based, multi-site randomised controlled trial. Of 269 women who participated in information sessions, 203 (75%) enrolled in the study. While women with and without legal guardians consented at the same approximate rates (83% and 85%, respectively), those with legal guardians enrolled at significantly lower rates (61%) because of lower rates (74%) of guardian consent. It is possible to recruit community-dwelling women with intellectual disabilities into randomised controlled trials at relatively high participation rates. Recruiting women who have guardians poses additional challenges for researchers.

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.

Purpose: This scoping review aims to explore the determinants influencing the nutritional status of adolescents with intellectual disabilities, including macronutrient intake, family income, and other contributing factors. Methods: A systematic search was conducted for articles published from 2012 to 2022 in PubMed, ScienceDirect, and Scopus databases, using keywords such as "nutritional status," "dietary intake," "family income," "intellectual disability," and "adolescent". Relevant studies were selected through title and abstract screening, followed by full-text review, resulting in nine articles for analysis. Results: The review found that inadequate dietary intake, particularly high consumption of unhealthy foods, significantly impacts the nutritional status of adolescents with intellectual disabilities. Family income, while affecting food security, does not independently determine dietary outcomes. Comorbid conditions like Down syndrome, autism spectrum disorder (ASD), and cerebral palsy, along with physical limitations and the use of psychotropic medications, further contribute to malnutrition risks. Conclusion: Adolescents with intellectual disabilities are at increased risk of malnutrition due to poor food intake. While family income influences food security, it is not the sole factor. The presence of comorbid conditions, physical limitations, and psychotropic medication use is also a key determinant of their nutritional status.

Non-pharmacological supportive-care interventions in acute myeloid leukaemia: a review of randomised controlled trials.

Background Special Olympics enables individuals with an intellectual disability across all continents to take part in sport year-round. Through its mission, Special Olympics provides a setting for athletes that aims to foster performance, participation, and personal development. Coaches play a central role in achieving these outcomes. As such, this scoping review aims to answer the following question: What is known about Special Olympics’ coach training and practices? Method Our scoping review was conducted according to Peters et al.'s (2020) guidelines. Keywords pertaining to Special Olympics, Program evaluation, and Coaches were searched in six databases to extract articles published between 1988 and October 1, 2021. Results In all, 16 studies were included in our scoping review. Of these studies, nine included information on coach training and 13 included information on coach practices. No randomized control trials were identified. Conclusions There is currently very little knowledge on Special Olympics coach training and practices. Moreover, there is no existing data to support the effectiveness of Special Olympics coaches formal training on coaches’ practices nor on athletes’ outcomes. There is an urgent need for research in this field.

La radio es el medio de comunicacion que mayor visibilidad puede dar a los colectivos en situacion de exclusion social, y es tambien una herramienta que motiva la participacion y contribuye al desarrollo integral de muchas personas, entre ellas, las que presentan alguna discapacidad intelectual o del desarrollo. En este trabajo se ha llevado a cabo una revision y actualizacion de la base de datos de talleres de radio para personas con DI actualmente activos en Espana, a fecha de 2017, a traves de los dos principales colectivos que representan a estas personas: la Confederacion Espanola de Organizaciones a favor de las Personas con Discapacidad Intelectual (FEAPS) –hoy Plena inclusion–, plataforma que integra mas de 800 asociaciones en todo el pais, e incorporando la oferta de los talleres de la Confederacion Espanola de Federaciones y Asociaciones de Atencion a las personas con Paralisis Cerebral y Afines (Confederacion ASPACE), que agrupa a unas 80 entidades en 17 comunidades autonomas. El resultado ofrece una foto fija de la estructura, funcionamiento y caracteristicas de 53 proyectos radiofonicos en los que participan cerca de 500 personas con discapacidad intelectual.