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Background: Intellectual disability organisations in the Netherlands are seeking to improve clients' quality of care by implementing methods that reduce involuntary care. This study described insights gained from sharing tacit and experiential implementation knowledge in Communities of Practice (CoP). Method: In a participatory research, managers, policymakers, experts-by-experience, support staff, and researchers participated in two CoP. Transcripts of the first meetings, focusing on tacit implementation knowledge and experiences in intellectual disability care, were analysed qualitatively. Results: Six themes and nine subthemes were found. One related to implementing methods in line with the Care and Coercion Act. Other themes were the quality of care dilemma, implementation determinants, organisational context, change in organisational culture, and implementation plans and strategies. Discussions: Findings reveal insights regarding the impact of implementing methods that reduce involuntary care on care professionals, management, and organisations. Through thinking together, CoP participants collectively learned about implementing methods in intellectual disability care.

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population.

Background: In this study, agents working in positions of authority within health sector organisations shared their perspectives concerning both the involvement of experts by experience with intellectual disabilities within their own organisations and their recommendations as to how best to involve experts by experience in policy and practice. Method: Using purposive sampling, eight agents were selected for semi-structured interviews. The interviews were analysed using thematic analysis. Results: The results indicated the importance of involving experts by experience. However, they also highlighted several barriers such as a lack of emphasis on genuine attention, insufficient visibility and recognition of expertise, and a lack of support for sustainable inclusion. Conclusions: Agents are willing to involve experts by experience in health sector organisations, but practical challenges hindered them from actually doing so. This study emphasises the importance to find solutions for better inclusion in policies.

Background: Moving out of the family home is a key transition for people with intellectual disabilities and their families. Yet there has been little research about parents' experiences of planning the move of their young adult offspring to residential settings offering 24-hour support. Method: Interviews were conducted with eleven parents whose offspring moved to residential settings within the past 5 years (five fathers; six mothers). They consisted of structured questions about planning their offsprings' moves and semi-structured questions about parents' experiences. Results: Content analysis of the structured questions revealed reasons parents began thinking about the moves and routes to finding information. The thematic analysis highlighted the emotional challenges parents faced. Conclusions: The findings highlight the need to address this neglected topic and ensure that practical and emotional support is put in place to plan positive futures, rather than relying on families to use their own initiative or waiting until a crisis occurs.

Adult siblings without disabilities play important roles in relation to their brothers and sisters with intellectual disabilities. This study reviewed knowledge about adult sibling relationships in Chinese societies, where one sibling has intellectual disability. Five English and two Chinese databases were searched for publications published up to 2022. Findings, based on 14 identified articles show that sibling relationships are considered in the context of parent-child relationships. Little attention is given to the nature of sibling relationships per se. Rather, research in Chinese societies generally frames sibling relationships as one-way caregiving, and where siblings' caregiving responsibilities are inherited from parents, increase as parents age and are organised according to gender and birth order. These findings contrast to Western studies where increasingly perspectives of adults with intellectual disabilities are sought and the reciprocal nature of sibling relationships is highlighted. Future research in Chinese societies may benefit from exploring aspects of relationships beyond caregiving.

Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings: Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions: Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing.

Background: One of the main challenges facing individuals with an intellectual disability is the stigma associated with the various obstacles that hinder their process of full integration. Despite the efforts made, more research is called for to explore the reference environments and reveal how public and self-stigma are perceived in higher education. This scientific paper's overriding aim is to analyse how different university stakeholders (students, lecturers, and admin and service staff) perceive the presence of young people with intellectual disability. Method: An ex post facto design has been used with a sample of 306 participants and a validated instrument for measuring the perception of individuals with an intellectual disability. Results: Our findings reveal that women perceive less stigma than men, and when the analysis is broken down into the collectives involved, students with disability are clearly more conscious of public or self-stigma than their peers without any disability. Conclusion: The disparity between gender and roles underscores the need for socioeducational interventions to promote inclusion in higher education and address self-stigma, thereby fostering self-sufficiency and emotional wellbeing among young individuals with intellectual disabilities.

Background: The transition from school to adult life is challenging for young people with intellectual disability. The study aimed to explore how young people with intellectual disability themselves experience the transition from school to adult life. Methods: A co-designed, qualitative study. Thematic data analysis of qualitative survey responses, semi-structured interviews, and focus groups with 27 young people with intellectual disability in three Australian states. Results: Participants found transition planning at school inconsistent or lacking and felt excluded from decision-making about their lives. Accessing meaningful services, training, and employment beyond volunteering was challenging and enduring, leaving participants in perpetual state of transition, feeling lost, and missing out of post-school adult milestones. Conclusions: Policy, system, and service gaps must be addressed with a nationally consistent and accountable approach that truly supports choice and control for young people with intellectual disability in transitioning from school into meaningful adult lives.

Background: The attitudes, perceptions and inherent biases of healthcare professionals (HCPs) have the potential to influence and inform health outcomes of people with intellectual disability. This review aimed to identify what educational interventions have been conducted to improve the attitude, knowledge, and confidence of HCPs in caring for people with intellectual disability. Method: A systematic literature review was conducted using Medline, ERIC and PsycINFO. Inclusion criteria included: articles published after 1980 in English, quantitative and mixed methods studies. Results: Of 1444 articles yielded, 10 met the inclusion criteria. Studies predominantly included doctors and nurses. Almost half (40%) of the studies reported interventions that were effective in changing perceived confidence and attitudes, while 60% achieved improvement in knowledge or skills based on Kirkpatrick classification. Conclusions: Training is valuable in improving knowledge, broadening perspectives, and increasing confidence in managing people with intellectual disability but there are limited studies in this area.

Background: People with an intellectual disability have a higher risk of developing mental disorders compared to the general population. Available evidence suggests those with an intellectual disability receiving inpatient treatment in general psychiatric wards may have certain unique characteristics. Method: Data gathered from a retrospective review of records of adults with intellectual disability admitted to general psychiatry wards in a tertiary psychiatric hospital in Singapore were analysed. Results: Of 290 adults with intellectual disability, 62.8% were males. The median age was 38 years. The median length of stay was 12 days and over 80% had at least one previous admission. Nearly 80% had a mild intellectual disability and 64.5% had at least one psychiatric comorbidity, the majority having schizophrenia or psychotic disorder. Physical aggression was the most common primary reason for admission. Conclusions: The specific profile of patients identified in the study would be helpful in determining priority areas for the development of specialist psychiatric services for people with intellectual disability.

Background: The Australian Commission on Safety and Quality in Health Care recommends the development of reasonable adjustments to Comprehensive Care Standard to better suit the needs of people with intellectual disability. Method: An audit of adults with Down syndrome attending a mainstream internal medicine outpatient clinic was undertaken to describe their biopsychosocial profile, identify previously developed reasonable adjustments to clinical service and to consider their alignment with comprehensive care. Results: Of 54 adults, 31 (57%) male, average age 36 years (17.5-68 years), there were multiple syndromal and non-syndromal co-morbidities, 10 deaths (9 expected), from dementia. All had some degree of intellectual disability with all requiring disability supports to assist in their healthcare and an active health-disability interface in most cases. Conclusions: Reasonable adjustments to usual clinical content, process, knowledge, and organisation were identified, which appeared to facilitate application of comprehensive care. These were predominantly influenced by intellectual disability, disability supports, and the health-disability interface rather than the disease profile.

Background: Traineeships have been proven to be beneficial vocational pathways for people with intellectual disability however to date the on-the-job training provision associated with traineeships has not been well documented. Method: This study describes components of on-the-job training provided to eight people, most with intellectual disability undergoing traineeships for 12 months in four aged care services. Sheri et al.'s (2019) framework for mentors during training was used to examine the findings. Results: Challenges in the traineeships were common to most new staff, such as developing confidence, recognising the urgency of some tasks, and time to learn how to support aged-care residents. The findings highlighted on-the-job training that was individualised, incorporating a variety of approaches was most beneficial to the trainees. Conclusions: Traineeships for people with intellectual disability require support from both the trainee and mentors. This support is essential to develop skills and ensure positive workplace attitudes.

Background: Many adults with intellectual disabilities live a sedentary lifestyle, have low levels of functional fitness and are overweight. The purpose of this study was to determine whether an exercise intervention with activities which are simple, fun, accessible and adapted for socialising in a group would elicit significant improvements in various parameters associated with functional fitness for adults with intellectual disabilities. Methods: Forty-two adults with intellectual disability (44.5 ± 11.5 years) were randomly located to an exercise group (n = 19) and a control group (n = 23). The program consisted of walking, dancing, and resistance training exercises and was implemented, three times a week for 6 weeks. Results: Significant ameliorations (p < 0.05) were reported for body mass, hip circumference, aerobic capacity, functional ability, muscular strength, balance, and flexibility with varying degrees of effect sizes. p Conclusions: The combined exercise training program showed a significant positive impact on various parameters associated with functional fitness for adults with intellectual disability.

Background: This study investigated the extent to which behaviour support services are accessible under Australia's National Disability Insurance Scheme (NDIS). Method: We conducted semi-structured interviews with families who support a member with an intellectual disability and challenging behaviour. We analysed this data with a supply and demand access framework initially designed for health care and described the lived experiences of participants and their families accessing behaviour supports. Results show that while the NDIS has improved participants' ability to pay for behaviour (and other) supports, this financial capacity represents only one of six other important aspects of access. Results: Families compensate for the shortcomings of the marketised environment which has arisen under the NDIS. Conclusion: This raises questions about the responsibilities of support provision, which is obscured in the new NDIS system and places responsibility for successfully accessing behaviour supports onto the family of the person with an intellectual disability.

Background: Future planning is a way of supporting people with intellectual disabilities and their families to think about their support needs as both groups age. Adults with intellectual disabilities, family members, and service providers are often involved in planning processes. However, it is unclear whose perspectives dominate in the literature and how these might vary. Method: A scoping review of qualitative studies (2012-2022) was undertaken to identify which perspectives are present in research on adults with intellectual disabilities and future planning, and to examine key aspects of their future planning experience. Results: The perspectives of parents and siblings predominate in the research. Those of adults with intellectual disabilities and service providers are underrepresented. Conclusions: The views of adults with intellectual disabilities need to be elevated in future planning and they need to be meaningfully involved in planning processes. Focus on the experiences of service providers is likewise needed.

Background: The study examined relations between a number of variables regarding typically-developing adult siblings of individuals with intellectual and developmental disability: involvement in the lives of their siblings with disability, personal resources (self-efficacy and sense of coherence), loneliness, and adjustment. Method: Participants included 99 siblings of individuals with intellectual and developmental disabilities who completed questionnaires examining involvement, personal resources (self-efficacy and sense of coherence), loneliness, and adjustment. Results: Results indicated that siblings who are more involved and perceive their efficacy and coherence as higher and loneliness as lower, experience higher levels of mental wellbeing and lower levels of mental distress. Personal resources also meaningfully predicted siblings' adjustment, and mediated the relations between involvement and wellbeing. Conclusions: The current study can serve as a basis for professional and current knowledge for the construction of intervention programs to strengthen siblings' personal resources: efficacy and coherence as resilience factors that promote adjustment.

Background: Limited data exist on problematic sexual behaviour (PSB) in youth with developmental disabilities in South Korea. Method: Sixty-one parents of children with intellectual disabilities or autism spectrum disorder (aged 13-30) reported children's PSB and emotional, behavioural, cognitive, and interpersonal factors. The frequency of PSB in children with developmental disabilities was verified, and various factors' effects on PSB were examined through multiple linear regression analysis. Results: There were no significant differences in PSB levels between children based on sex and age group. The externalising tendency and a history of family conflict predicted higher PSB. In contrast, protective factors had no significant predictive effects. Conclusions: PSB may vary depending on emotional and interpersonal factors, as well as cognitive deficits. Our findings emphasise the importance of interventions for PSB that consider both intrapersonal and interpersonal aspects.

Background: Some adults with intellectual disabilities do not acquire oral feeding skills and are dependent on gastrostomy tube supplementation. Methods: Two adults with intellectual and multiple disabilities received intervention for oral consumption during daily meals (standardised food and liquid quantities, individualised procedural guidelines, and consumption-contingent consequences) while the frequency and amount of gastrostomy tube feedings were gradually decreased and eliminated. Results: Compared to baseline (pre-intervention) conditions, the adults increased oral consumption of food and liquid during the intervention and gastrostomy tube supplementation was eliminated. These intervention results continued through multiyear follow-up, one participant lost considerable weight, the second participant maintained weight, and both participants had good health (no hospitalisations, illnesses, and missed medications) and benefited from eating daily meals among their peers. Conclusions: Behaviourally-based intervention with interdisciplinary collaboration and appetite stimulation strategy can establish and improve oral feeding in adults with intellectual and multiple disabilities who were previously gastrostomy tube dependent.

Background: In most African countries, disability is explained by cultural beliefs. This has implications for healthcare delivery for persons with intellectual disabilities. Methods: With the aid of a qualitative approach, we explore the interplay between cultural beliefs and the training of health professionals and their implications for the healthcare delivery to persons living with intellectual disabilities in the Asokwa and Oforikrom Municipalities. Findings: Findings revealed that cultural beliefs about intellectually disabled people include the idea that their facilities are forbidden and that pregnant women who pass by them may have a child with a disability. Further, health professionals received little intellectual disability training. As a result, healthcare professionals lack knowledge of the needs and care of this group. Conclusion: This study recommends that professionals should take comprehensive intellectual disability courses in training schools. Also, health professionals should attend periodic workshops on the range of intellectual disabilities to raise awareness of their needs and care.

Background: Research on post-secondary training for individuals with intellectual disabilities has generally focused on programs, with little consideration of the structures and mechanisms that give rise to them. This article adopts a critical realist perspective to comparatively analyse and theorise about the contextual structures contributing to the introduction of post-secondary training programs in universities for individuals with intellectual disabilities. Method: Six stages in critical realist explanatory research were followed. They include (1) description, (2) analytical resolution, (3) abduction/theoretical redescription, (4) retroduction, (5) comparison between different theories and abstractions, and (6) concretisation and contextualisation. Results: Historical, socio-political, and educational policy structures and mechanisms, indicated three program typologies: program as niche, as a generalisable prototype, and as an evolutionary response to evolving conditions. Conclusions: By developing explanations about preconditions, the study draws out nuanced sub-types occurring within a single university-based program, theorises on trajectories for success, and lays the groundwork for future empirical and conceptual development.

Background: There is little research comparatively assessing prevalence of pain between older people either with or without intellectual disability. This paper explores health and social factors associated with chronic pain in these two groups. Method: A cross-sectional survey was undertaken in New South Wales and Queensland, Australia. Inclusion criteria were adults either with or without intellectual disability, aged 60 years and older, and currently living in community-settings. Univariate and multivariable analyses were undertaken on a sample of 391 adults with intellectual disability and 920 adults without intellectual disability. Results: Key findings included higher prevalence of pain in the intellectual disability group, along with higher rates of osteoarthritis, falls, oral health problems, and mood disorders. Conclusions: Mitigating risk factors for conditions that cause chronic pain in older adults is crucial. As longevity increases, the healthcare sector needs to prioritise chronic pain management for people with intellectual disabilities through appropriate treatment strategies.

Background: Siblings of children with intellectual disability have unique family experiences, varying by type of disability. Methods: Parents of children with Down syndrome (156) or with Rett syndrome (149) completed questionnaires relating to sibling advantages and disadvantages, experiences of holidays and recreation, and perceived availability of parental time. Qualitative responses were analysed using thematic analysis. Results: Positive personality traits, an optimistic outlook, enhanced skills, and rich relationships were strong and consistent parental perceptions for siblings in both disability groups. Parents of children with Rett syndrome were more likely to rank themselves lower on time availability, and to report sibling difficulties with social engagement and family holidays. Conclusions: Parental responses appeared to be influenced by disability type, and reflective of child capabilities. Perceptions of sibling experience should be supplemented by data collected directly from siblings to fully understand their unique perspective, and the ways in which their experiences could be enhanced.

Background: Autistic people commonly report differing sensory experiences. This research aimed to find out about sensory issues and the sensory environments of autistic adults who did and did not have intellectual disabilities. Method: Online questionnaires were designed to identify sensory needs. The survey was completed by 138 autistic adults who self-reported and 58 informants reporting about autistic adults who had intellectual disabilities. Results: Autistic adults self-reported high numbers of sensory needs compared with informant reports of the needs of autistic adults who had intellectual disabilities. Interpretation: It is possible that informants under-reported issues for autistic adults with intellectual disabilities. Some sensory needs are harder to observe and people with intellectual disabilities may find it difficult to communicate such needs. Conclusion: The authors propose that better methods of supporting communication of "harder to observe" sensory needs should be developed. Further research is needed.

Background: Internships may be a successful pathway for increasing employment rates among people with intellectual disability. This paper presents a summative evaluation of a brief film internship program for people with intellectual disability. Method: At the commencement and conclusion of the internship, semi-structured interviews were conducted with eight interns and 10 mentors. The interview material was analysed thematically. Results: Five themes described the experiences of interns: enhancing intern skill development and recognising gaps, building intern confidence, providing interns with assistance, meeting interns' expectations of the program, and working towards ongoing employment. Four themes were present in the discussions with mentors: drawing on previous experience with people with disability and mentoring roles, feeling confident in a mentor role, providing mentors with support, and reflecting on interns' future job prospects. Conclusion: Although the program developed interns' skills and confidence, an expanded program appears needed to generate open employment outcomes.

Background: Issues of risk and safety can be challenging to discuss with forensic patients with an intellectual disability. Talking Mats is a visual communication tool that facilitates therapeutic conversations. Method: A pilot study, adopting an ethnographic approach, was used to evaluate Talking Mats. Interviews and video observations were conducted with nurses and forensic patients with an intellectual disability from two forensic wards in Scotland. Results: Exploratory evidence suggests that Talking Mats offers a non-biased platform to discuss potentially emotive issues around risk, safety, and wellbeing. Pre-existing notions of Talking Mats, staff availability, and the context of COVID-19 acted as barriers to adopting the visual communications tool. Conclusion: There is value in further research regarding communication tools to facilitate input on care planning and risk management for patients with an intellectual disability.

Background: There is often very little training during medical school focused on how to provide care to individuals with intellectual disabilities. This curriculum gap results in students reporting low levels of confidence in their ability to care for this population. Methods: Medical students attended an interactive, narrative-based session on caring for individuals with intellectual disabilities. Student confidence was assessed through pre- and post-session surveys. Results: Students reported low levels of confidence in their overall ability to provide care to people with intellectual disabilities, but this level significantly increased following the course session. Student confidence also increased significantly across all learning objectives. Conclusions: The success of this session provides additional support for the importance of including individuals with intellectual disabilities within the medical school curriculum; however, we must continue to advocate for more longitudinal educational opportunities in this field to ensure current and future physicians can provide care to this population.

Background: It is highly recommended that professionals promote caregivers' capacity-building to use intervention strategies to support children with developmental delays or disabilities in natural learning environments, particularly in the earliest years of life. There is a gap, however, in understanding the extent to which these professionals may feel supported in tailoring outreach to support parents with Intellectual Disability and/or mental health conditions (MHCs). Methods: We surveyed providers (n = 55) who work with families of infants and toddlers in Early Intervention programs across the United States. Results: Most had at least one family with intellectual disability (87%) or a MHC (92%). At least half felt parents with intellectual disability or MHCs warranted more time/resources (64% or 50%, respectively) and half were "extremely interested" in trainings to support parents with intellectual disability (48%) or MHCs (56%). Conclusions: Findings and implications are discussed.

Background: This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Method: Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results: Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Conclusion: Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.

Background: Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence. Method: Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis. Results: On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle. Conclusions: Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.

Background: This study investigates the use of health and dental care services in adults with intellectual disability in the last 12 months according to Norwegian recommendations and in relation to age and intellectual disability levels. Method: A cross-sectional community-based survey including 214 participants (56% men). POMONA health indicators were used for data collection. Results: Health checks and contact with general practitioners in the last year increased with age but were less frequent in those with more severe intellectual disability. Hospital admissions were age independent. Less than one-fifth of women had undergone cancer screening, with small variations according to intellectual disability severity levels. Few had an individual plan. More than one-third experienced poor dental health despite frequent controls. Conclusions: The use of health checks was lower than recommended, especially in individuals with more severe intellectual disability. Service access and individual plan use need to be enhanced, and dental care services should be improved.

Background: The theoretical understanding of firesetting behaviour has predominantly been developed with men in prisons or psychiatric hospitals without neurodevelopmental disabilities. Consequently, there is a lack of evidence regarding the validity of current theory when applied to adults with intellectual disabilities and/or autism. Method: Thirteen adults in England with intellectual and other developmental disabilities were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Interviews were analysed using a Grounded Theory approach. Results: The resulting model consists of four phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period. Conclusion: The model accounts for unique precursors to firesetting including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the significance of post-offence behaviour and cognitions are highlighted.

Background: Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. Method: A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. Results: This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. Conclusions: This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level.

Background: Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. Method: The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT). Results: The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81-0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude. Conclusion: The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs.

Background: Since COVID-19, remote consultation (by telephone and video) has become widespread. This study investigated the experience of using remote consultation in Specialist Intellectual Disability Community services. Method: A total of 126 health staff working across eight Specialist Intellectual Disability Community teams in the NHS Health Board of Greater Glasgow and Clyde were asked to complete a short Likert-scale survey about remote consultation. Results: There were 61 (48%) respondents from a range of disciplines. Overall, respondents were positive about remote consultation but found it was often inadequate to complete a full patient assessment. Moving forwards, respondents wanted around 60% of all consultations to remain face-to-face. It was significantly more difficult to engage and communicate with patients with more severe levels of disability. Conclusions: Remote consultation has been successful, but there is still a need for face-to-face assessment in intellectual disability services, particularly when working with people with more severe levels of disability.

Background: Mock or practice interviews have become a typical tool for transition programs for individuals with intellectual and developmental disabilities. Method: We examined what interview skills were most associated with subsequent employment for individuals intellectual and developmental disabilities via practice interviews. The likelihood of employment was measured as a function of whether the interviewer responded that they would hire the individual. Results: Results indicate that the following job interview skills were considered most important were: sits still and straight; understandable speech; good posture; appropriate voice; and appropriate handshake. Conclusions: As these potential employers had hired individuals with intellectual and developmental disabilities, we suggest that their feedback would be particularly relevant.

Background: The Personal Outcomes Scale is a measurement tool to examine quality of life among persons with intellectual disability. This paper addressed the validity and reliability of the Japanese version of the scale using both self-reports and reports of others. Method: Data were collected from 128 people with intellectual disability (90 men and 38 women; M[subscript age] = 37.19 ± 11.90 (range = 19-69) years) and 27 support workers. Reliability was examined by Cronbach's alpha coefficients, inter-respondent reliability coefficients, and test-retest reliability. Validity was examined by construct validity and criteria-related validity. Results: Self- and other-reported versions showed adequate internal consistency ([alpha] = 0.79); however, some domains had relatively low internal consistency. Validity tests showed weak to moderate correlations between the total score and the domain scores in both versions. Conclusions: The scale is reliable overall; however, cultural aspects should be considered to bolster its reliability for practical application.

Background: Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. Method: We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n = 17). We used a content analysis approach to code data and analyse them for larger themes and relationships. Results: the majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). Conclusions: clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed.

Background: The aim of this study was to investigate the demographic, clinical characteristics, and service systems of patients with autism spectrum disorder (ASD) and/or intellectual disability presenting to a large paediatric hospital emergency department (ED) with behaviours of concern (BOC) over a two-year period. Method: Retrospective audit of ED presentations with BOC in patients with ASD and/or intellectual disability from 1 January 2019 to 31 December 2020, at the Royal Children's Hospital, Melbourne, Australia. Results: There were 124 presentations (84 patients) in 2019 and 129 presentations (82 patients) in 2020. The mean age was 11.7 years. 55% arrived by ambulance, 24% required physical restraint, and 26% required sedation. Re-presentation was predicted by single-parent household, child protection involvement, and requirement of an interpreter. Conclusions: Children and adolescents with ASD and/or intellectual disability regularly present to ED with BOC. New models of care are required to better support this highly vulnerable patient group.

Background: Research suggests physicians may harbour paternalistic attitudes towards people with intellectual and developmental disabilities and lack the knowledge and skills to work with them. This study examined the impact of a brief intellectual and developmental disability curriculum intervention on these outcomes. Methods: First-year medical students completed a pre-post questionnaire on attitudes and knowledge of intellectual and developmental disabilities in conjunction with a curriculum (a virtual tour of a developmental service site; panel discussions; tutorial presentations). Paired data were available for 33 students. Results: Students' confidence communicating with the person increased (pre-mean = 5.7/10, SD = 1.9; post-mean = 6.3/10, SD = 1.7; p < 0.05) as did their feeling of competence taking a history (pre-mean = 4.2/10, SD = 1.9; post-mean = 5.5, SD = 1.7; p < 0.0001). Their inclination toward sheltering people with intellectual and developmental disabilities also increased (pre-mean = 2.8/6, SD = 0.7; post-mean = 3.2/6, SD = 0.7; p < 0.005). Conclusion: This intervention may contribute to student confidence and their sense of competence in interacting with people with intellectual and developmental disabilities but did not suggest they adopted the philosophy of community inclusion.

Background: Families, as a network of emotional connections, assume a particularly important role when there is a member with intellectual disabilities (ID). The main aim of the study is to explore the perceptions of parents of persons with ID about their family relationships. Method: Ten parents of persons with ID, four of which were fathers, were interviewed using photoelicited interviews and 60 photographs were analysed. Results: Persons depicted in the photographs were mainly members of the nuclear family, and the moments captured were mostly family rituals. Joy was the most present feeling in the photographs and "saudade" the most evoked feeling when viewing them. Family relationships assume an essential role for parents, and acceptance and inclusion emerged as central concepts. Conclusions: The core value of family relationships for parents, as a resource to deal with the challenges brought on by the condition, should be taken into account in interventions.

Background: People with intellectual disability are at higher risk of experiencing social isolation in their everyday lives, because of exclusionary practices, discriminatory social policies and structural exclusion. However, less is known about what people with intellectual disability themselves think about loneliness in their lives and what might alleviate it. Method: In this inclusive research study, 17 people with intellectual disability participated in focus groups or individual interviews and talked about what makes them feel lonely and what helps them to feel included. Results: Our findings indicate that the domains of interaction, participation, personal security and attitudes are areas of strong influence on people's experience of inclusion and exclusion and hold opportunities for positive change. Conclusions: Change at systems and community levels is needed to ensure people with intellectual disability are included, have access to disability-ready places that respect their human rights, listen, recognise and include their strategies to alleviate loneliness.

Medical students receive very little instruction related to caring for people with intellectual/developmental disabilities. As a result, medical students and physicians alike report low levels of confidence in their ability to provide care to this population. In this piece, I provide a medical student's perspective on how to implement changes in the medical school curriculum such that our future physicians are more prepared to provide care to people with intellectual/developmental disabilities.

Background: Parents of children with intellectual and neurodevelopmental disorders are a highly burdened group that faces additional challenges during the COVID-19 pandemic. Methods: In this study, parents of children with intellectual and neurodevelopmental disorders (N = 600) living in Canada participated in a cross-sectional online survey. Results: More than 96% of the parents reported facing additional challenges due to the pandemic. COVID-19-related stressors correlated with poorer mental and physical health. Parents who reported a higher amount of COVID-19-related stressors also reported more post-traumatic stress disorder (PTSD) symptoms. Discussion: Resuming and implementing new services for children with intellectual and neurodevelopmental disorders and their parents will be key in alleviating the challenges for those parents.

Background: Adolescents with intellectual disability in residential child care are a highly vulnerable population. The main goal of this study is to explore the characteristics of young people with intellectual disability in therapeutic residential care (TRC) in Spain and to identify the key variables associated with their referral to these services. Method: The total sample consisted of 473 young people in residential child care in Spain (63.8% boys), aged between 12 and 17 years (M = 15.32), divided into three different groups for comparison. An "ad hoc questionnaire" and the "Youth Self-Report" were used to collect information. Results: Participants with intellectual disability in TRC presented a higher frequency of externalising problems and risk behaviours than adolescents with disability in general residential programmes. However, it was lower than that of their peers without disability in TRC. Conclusions: Needs of adolescents with intellectual disability should be assessed before a referral to these facilities, in order to adapt the interventions provided.

Background: People with intellectual disability who require cancer services face several barriers and inequities, including delayed or unrecognised cancer diagnosis and inadequate attention paid to their specific concerns, needs and preferences about care. Methods: In this case report, we present a case report of a 33-year-old male with severe intellectual disability requiring treatment for metastatic testicular cancer. The patient's intellectual disability required major adjustments to the delivery of chemotherapy. We also describe the involvement of a clinical ethics committee to analyse the ethical pros and cons of different treatment options for this patient, and to facilitate discussions about collaboration and communication required, between different clinical teams, and with the patient's family and carers. Results and Conclusions: We suggest this level of clinical and ethical deliberation sets the bar for what is required for healthcare services to be inclusive of and accessible for all people, especially those with intellectual disability.

Background: Current literature mainly focuses on adaptive profiles from a categorical perspective but yields inconclusive results. The present study puts a transdiagnostic approach next to a "classical" categorical approach. Methods: In this study, 222 children (5-18 years old) with autism and/or intellectual disability participated. Variance analyses, based on standard scores from ABAS-3 at group-level, were conducted in order to compare adaptive domains within categories. A K-Means cluster analysis was used to delineate empirically derived clusters with a similar profile of difference scores at an individual level. Chi-square tests and variance analyses were used to investigate the distribution of variables across clusters. Results: From a categorical perspective, results were in line with current literature. A transdiagnostic perspective revealed three adaptive profiles (Homogeneous, Social, and Practical). No perfect match was found between specific adaptive profiles and diagnostic categories. Conclusions: A transdiagnostic perspective sheds light on the heterogeneity within and the overlap across diagnostic categories.

Background and Aims: Self-determination related skills are central for achieving a life of quality for people with intellectual disability and develop as the person interacts with his/her contexts, such as home. As such, families are crucial agents in supporting the self-determination of their children with intellectual disability, although to date, little is known about how to support those families. Methods: To address this need, the present study used a Delphi technique to build and reach a consensus on the critical components that should inform interventions targeting families to promote their children's self-determination. Results: Academics and professionals participated in this three-round Delphi study that concluded with a 90-item list of critical components for intervention, concretely relating to general principles, format, content, and methodology. Conclusions: This knowledge has the potential to guide emergent intervention initiatives to support families in fostering their children's self-determination. Implications for research and practice fields are provided and discussed.

The present study investigated the role of demographic and personal factors concerning the attitudes toward intellectual disability. Our sample consisted of 482 Romanians aged 18 to 74. We measured the overall attitudes toward intellectual disability, as well as some specific dimensions, i.e., integration or segregation, social distance, private rights, and subtle derogatory changes. Our results suggested that the most significant predictor of the overall positive attitude toward intellectual disability, as well as for the subtle derogatory beliefs and integration/segregation dimensions, was the perceived environmental causal belief about intellectual disability. Next, the biomedical causal was the most significant predictor for the social distance dimension. Finally, the perceived fate-related causal belief was the most significant predictor for the private rights dimension. We discuss our findings concerning their role in designing targeted public awareness programs.

Background: To document whether the sociocognitive peculiarities of people with Down Syndrome impact the construction of attachment at different ages, a systematic review of the literature was carried out. Method: This review followed the Preferred Reporting Items for Systematic Reviews and MetaAnalyses, was conducted on three databases: psycINFO, MEDLINE, and Psychology and Behavioural Sciences Collection (1975-2021). Twelve studies were included. Results: Most children with Down syndrome develop specific attachment patterns in infancy and childhood, and around half of them become secure. However, the risk of exhibiting atypical/ unclassifiable or disorganised attachment is higher among children with Down syndrome compared to typically developing children. Findings are mixed regarding the specific role of cognitive disability. Conclusion: These findings highlight the fact that Down syndrome does not preclude the establishment of secure attachment. However, more research is needed to understand what the unclassifiable category represents in terms of attachment.

Background: Having an intellectual disability increases the likelihood for exhibiting impairments in vision, hearing, and balance. The intersection of these issues has yet to be described in a large cohort. Methods: By hosting the largest public health database for individuals with intellectual disability, Special Olympics (SO) offers [approximately]120,000 assessments completed at competitions between 2007 and 2018. Results: Of SO athletes assessed for vision (N = 52,521), hearing (N = 35,073), and balance (N = 31,446), 74%, 28%, and 51% demonstrated a deficit, respectively. Thirteen percent of athletes presenting to three assessments (N = 7,887) showed concurrent impairments. Conclusions: The high prevalence of sensory and balance impairments at younger ages (M = 28.8, SD = 14.15) compared to the general population highlights disparities faced by the intellectual disability community and should guide public health policy for improved screening and counselling.