Treating traumatized children with intellectual disabilities: Tailoring Trauma-Focused Cognitive Behaviour Therapy for a vulnerable population.

BACKGROUND: Children with intellectual disabilities are at heightened risk for traumatization, though underserved due to silos of care, diagnostic overshadowing, and lack of adapted treatment. Trauma-Focused Cognitive Behavioural Therapy (TF-CBT), an evidence-based childhood trauma therapy, is described with recommended adaptations for use with children who have intellectual disabilities. METHOD: We present a suggested theoretical and clinical guide for treating children with mild to moderate intellectual disabilities. We explicate key functional domains of intellectual disabilities-comprehension, executive functions, and generalization-as the basis for tailoring the treatment model. RESULTS: Therapy recommendations are organized into a heuristic 'matrix' of resources and adaptations to TF-CBT components, based on clinical experience and research literature, illustrated with composite case vignettes. CONCLUSION: Children with intellectual disabilities are a uniquely vulnerable population historically excluded from clinical trauma interventions and research but can respond to adapted care. Considerations for future research and dissemination are discussed.

Considerations for Alternative Decision-Making When Transitioning to Adulthood for Youth With Intellectual and Developmental Disabilities: Policy Statement.

With advances in medical care, more youth with intellectual and/or developmental disabilities (IDD) are transitioning into adulthood. Patient- and family-centered, integrated care is warranted around this time of transition. Support teams (including the youth, caregivers, teachers, and pediatricians) should engage in transition planning, ideally starting between 12 and 14 years of age, to identify and develop resources to support the maturing youth's capacity for independent decision-making. Care teams should consider the varied levels of alternative decision-making support, which may include supported decision-making, medical proxy decision-making, power of attorney, and/or establishment of legal guardianship arrangements, to support the youth's health and well-being optimally. Ultimately, if independent decision-making is not appropriate, the goal for youth with IDD should be the least restrictive alternative, while preserving human rights and human dignity and promoting their autonomy. These considerations review alternative decision-making support, concepts, and legal requirements available for youth with IDD and their care teams. Pediatricians can support youth with IDD and their families in the transition process and decision-making autonomy by actively engaging the youth in care decisions, supporting needs for augmentative communication, fostering their expression of preferences and understanding of care decisions, and linking them to resources such as the medical-legal partnership model.

Leadership in intellectual disability practice: design, development, and evaluation of a programme to support practice.

BACKGROUND: Intellectual disability services have and continue to experience changes in service provision. This has an implication for leadership in practice as the quality of leadership has a direct influence on staff practice and care provided. AIM: To design, deliver, and evaluate a leadership programme for nurse and social care managers in Ireland. DESIGN: An accredited programme was designed based on evidence from literature, practice, and national expertise. A cross-sectional survey was used to collect information on the attitudes and behaviour of participants before commencing and after completing the programme. Data from the questionnaires were analysed using SPSS and open-ended questions were analysed using content analysis. SETTING: Intellectual disability services. PARTICIPANTS: 102 participants completed the programme and survey. METHODS: Pre-post survey and reported using the CROSS guidelines. RESULTS: Participants' expectations were rated highly, and all items scored higher in the post-survey. Qualitative data was overall positive regarding opportunities for more time to work through each aspect of the programme. The key learning was through the forum day where participants shared their group projects. CONCLUSIONS: Overall, the programme was positively evaluated and through engaging with the programme participants' perceptions moved from seeing leadership as mostly task-oriented to realising that qualities such as good communication, person-centredness, advocacy, supporting, role modelling, and empowering are key to leadership.

Adult Day Services for People With Intellectual and Developmental Disabilities: A Scoping Review.

BACKGROUND: Adult day services (ADS) are therapeutic, social, and health-related activities that keep people in their homes, rather than institutional settings. While there is a growing body of literature on ADS for older adults, there is far less information available about ADS for younger adults with intellectual and/or developmental disabilities (IDDs). METHOD: Researchers conducted a scoping review of 6 databases (892 total articles). RESULTS: After applying inclusion and exclusion criteria, 74 full articles were reviewed, with 10 articles meeting study requirements. The research team found the literature is limited to simple descriptive reports or interventions that use ADS as a platform. CONCLUSIONS: Simply put, we know very little about the services provided to younger adults with IDD in ADS. Implications for future research are discussed, including the need to catalog the services offered in ADS for younger adults with IDD and to evaluate their impact on participant well-being.

Primary mental healthcare for adults with mild intellectual disabilities: Patients' perspectives.

BACKGROUND: People with mild intellectual disabilities (MID) experience more mental health (MH) problems than the general population but often do not receive appropriate primary MH care. Primary MH care is essential in integrative MH care and, therefore, demands high quality. To improve primary MH care for this patient group, account must be taken of the experiences of people with MID. So far, their perspectives have been largely absent from primary MH care research. OBJECTIVES: To explore patients' experiences, needs, and suggestions for improvement regarding primary MH care for people with MID. METHODS: Qualitative study among adults with MID who visited their GP with MH problems in the previous 12 months. Semi-structured interviews were conducted using a guide based on Person-Centred Primary Care Measures. Transcripts were analysed thematically. RESULTS: The 11 interviews that we conducted revealed four themes. The first theme, cumulative vulnerability, describes the vulnerability - instigated by the MID and reinforced by MH problems - experienced on a GP visit. The other themes (needs regarding the GP, needs regarding the network, self-determination) arise from this vulnerability. CONCLUSION: People with both MID and MH problems are extra vulnerable in primary care but desire self-determination regarding their MH care trajectory. This requires investment in a good GP-patient relationship and the organisation of additional support to meet these patients' needs, for which collaborative care with the patient, the patient's network, and other (care) professionals is of utmost importance.

People with mild intellectual disabilities (MID) feel more vulnerable visiting their GP with mental health (MH) problems than with somatic problemsPatients with MH problems report additional needs and expectations regarding their care and support networkGPs face challenges in coordinating care for patients with both MID and MH problems.

The power of digital story in early mathematics education: Innovative approaches for children with intellectual disabilities.

This study explored the effectiveness of digital story interventions in improving early math skills in kindergarten children with mild intellectual disabilities. Digital stories are multimedia narratives that combine text, images, and audio to enhance learning experience. This experimental study used a pretest-posttest control group design. The intervention group consisted of 15 children who participated in an 8-week digital story intervention targeting early math skills. A matched control group was used to control for sex differences. Data were collected through the TEMA-3 test scores and teacher and child feedback. Post-intervention, the experimental group showed significant improvements in TEMA-3 test scores compared to the control group. Teachers and children reported a positive perception of the intervention's social validity, highlighting enhanced engagement and understanding of math concepts. This study demonstrated that digital story-based education is a promising approach for improving early math skills in children with mild intellectual disabilities. These findings suggest potential implications for integrating digital storytelling into special education curricula and highlight avenues for future research in this field.

Exploring information needs among family caregivers of children with intellectual disability in a rural area of South Africa: a qualitative study.

BACKGROUND: Globally, families experience challenges caring for and raising children with intellectual disability (ID). Family caregivers in rural states are mostly known for lacking support resources, including information on understanding the care of ID. Lack of adequate information on understanding of ID compromises the provision of life-long care and support of the children with ID's physical, emotional, psychological and social developmental well-being. The study aimed to explore the information needs of family caregivers regarding the care of children with ID in rural areas of Limpopo Province, South Africa. METHODS: This qualitative explorative research conducted 16 in-depth individual interviews and one focus group discussion with ten family members. The participants shared their experiences of raising children with ID in rural communities. Inductive thematic analysis using Atlas Ti software categorised emerging themes and subthemes of this study from merged data sets on information needs regarding the care of children with ID among family caregivers. RESULTS: The findings highlighted the need for information regarding ID care among family caregivers raising children with ID in the home environment. The information challenges experienced by family caregivers include caring for the challenging behaviour of children with ID and available support resources and services for the children and their families. These challenges impact the care and support required to meet the developmental needs of children with ID. Furthermore, inadequate information on ID among family caregivers in rural communities with a lack of resources restricts the children from accessing required support services. CONCLUSIONS: Given the information challenges these families face on ID, the stakeholders must develop continuous training programmes that will equip, empower, and further monitor ID care and management among family caregivers to enhance care and the raising of children with dignity.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Healthy Nutrition for Adults With Intellectual Disability: Piloting a Mobile Health Application and Self-Management Intervention.

While there are many benefits to healthy nutrition, adults with intellectual disability often have poor nutrition habits. The purpose of this pilot study was to examine the use of a nutrition app and self-management intervention to increase awareness of healthy nutrition choices for adults with intellectual disability. Data was gathered on the effectiveness of the intervention and social validity of intervention components. Through a single-case multiple-baseline across participants design, the mobile nutrition app with self-management intervention was effective in increasing awareness of healthier nutrition items for three adults with an intellectual disability. Future research is needed to replicate and generalize findings, as well as explore additional supports that may be needed for individuals who have more extensive support needs.

Medical students' perceptions on preparedness and care delivery for patients with autism or intellectual disability.

Introduction: To provide competent care to patients with autism spectrum disorder (ASD) or intellectual developmental disorder (IDD), healthcare professionals must recognize the needs of neurodivergent populations and adapt their clinical approach. We assessed the perceived preparedness of medical students to adapt care delivery for patients with ASD/IDD, as well as their perceptions on neurodiversity education. Methods: We conducted a sequential explanatory mixed-methods study on undergraduate medical students at McGill University during the academic year 2020-2021. We administered an online survey, followed by semi-structured interviews. We analyzed data using descriptive statistics and thematic analysis. We integrated findings at the interpretation level. Results: We included two-hundred-ten survey responses (~29% of class), and 12 interviews. Few students felt prepared to adjust care for patients with ASD/IDD despite most indicating doing so was important. Ninety-seven percent desired more training regarding care accommodation for neurodivergent patients. Thematic analysis unveiled the perception of current insufficient education, and the value of experiential learning. Discussion/Conclusions: This study highlights low perceived preparedness of medical students to accommodate care for neurodivergent patients, and a desire for more instruction. Incorporating interactive training in medical school curricula regarding modifying care delivery for neurodivergent individuals may improve the perceived preparedness of medical trainees to work with these patients and care quality.

Introduction: Pour fournir des soins compétents aux patients atteints d'un trouble du spectre de l'autisme (TSA) ou d'un trouble du développement intellectuel (TDI), les professionnels de la santé doivent reconnaître les besoins des populations neurodivergentes et adapter leur approche clinique. Nous avons évalué le degré perçu de préparation des étudiants en médecine à adapter la prestation de soins aux patients atteints de TSA/TDI, ainsi que leurs perceptions de la formation relative à la neurodiversité. Méthodes: Nous avons mené une étude séquentielle explicative à méthodes mixtes auprès d'étudiants en médecine de premier cycle de l'Université McGill au cours de l'année universitaire 2020-2021. Nous avons administré un sondage en ligne, suivi d'entretiens semi-structurés. Nous avons analysé les données en faisant appel à la statistique descriptive et à une analyse thématique. Nous avons intégré les résultats sur le plan interprétatif. Résultats: Nous avons inclus deux cent dix réponses à l'enquête (~29% de la classe), et 12 entretiens. Peu d'étudiants se sentaient préparés à adapter les soins aux patients atteints de TSA/TDI, bien que la plupart d'entre eux aient indiqué qu'il était important de le faire. Quatre-vingt-dix-sept pour cent d'entre eux souhaitaient davantage de formation sur l'adaptation des soins aux patients neurodivergents. L'analyse thématique a révélé que les participants considéraient la formation actuelle insuffisante et jugeaient utile l'apprentissage par l'expérience. Discussion/Conclusions: Cette étude met en évidence le faible niveau de préparation perçu par les étudiants en médecine en ce qui concerne l'adaptation des soins aux patients neurodivergents, ainsi que le désir d'une formation plus poussée. L'intégration dans les programmes des facultés de médecine d'une formation interactive portant sur la modification de la prestation des soins pour les personnes neurodivergentes pourrait améliorer la perception des étudiants en médecine de leur degré de préparation à travailler avec ce type de patients et de la qualité des soins.

A comprehensive systematic literature review of the burden of illness of Lennox-Gastaut syndrome on patients, caregivers, and society.

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms.

Health Conditions, Education Services, and Transition Planning for Adolescents With Autism.

OBJECTIVE: Our objectives with this study were to describe the frequency of selected cooccurring health conditions and individualized education program (IEP) services and post-high school transition planning for adolescents with autism spectrum disorder and identify disparities by sex, intellectual ability, race or ethnicity, and geographic area. METHODS: The study sample included 1787 adolescents born in 2004 who were identified as having autism through a health and education record review through age 16 years in 2020. These adolescents were part of a longitudinal population-based surveillance birth cohort from the Autism and Developmental Disabilities Monitoring Network from 2004 to 2020 in 5 US catchment areas. RESULTS: Attention deficit hyperactivity disorder (47%) and anxiety (39%) were the most common cooccurring health conditions. Anxiety was less commonly identified for those with intellectual disability than those without. It was also less commonly identified among Black adolescents compared with White or Hispanic adolescents. There was wide variation across Autism and Developmental Disabilities Monitoring Network sites in the provision of school-based IEP services. Students with intellectual disability were less likely to receive school-based mental health services and more likely to have a goal for postsecondary independent living skills compared with those without intellectual disability. A total of 37% of students did not participate in standardized testing. CONCLUSIONS: We identified disparities in the identification of cooccurring conditions and school-based IEP services, practices, and transition planning. Working with pediatric health and education providers, families, and adolescents with autism will be important to identify contributing factors and to focus efforts to reduce disparities in the supports and services adolescents with autism have access to and receive.

Definition, assessment and management of frailty for people with intellectual disabilities: A scoping review.

BACKGROUND: People with intellectual disabilities may experience frailty earlier than the general population. This scoping review aimed to investigate how frailty is defined, assessed, and managed in adults with an intellectual disability; factors associated with frailty; and the potential impact of COVID-19 on frailty identification and management. METHOD: Databases were searched from January 2016 to July 2023 for studies that investigated frailty in individuals with intellectual disabilities. RESULTS: Twenty studies met the inclusion criteria. Frailty prevalence varied between 9% and 84%. Greater severity of intellectual disability, presence of Down syndrome, older age, polypharmacy, and group home living were associated with frailty. Multiagency working, trusted relationships and provision of evidence-based information may all be beneficial in frailty management. CONCLUSION: Frailty is common for people with intellectual disabilities and is best identified with measures specifically designed for this population. Future research should evaluate interventions to manage frailty and improve lives.

Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.

BACKGROUND: Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future. METHODS: Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co-design workshops and a user feedback phase. RESULTS: The co-design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co-design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. CONCLUSION: The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co-design approach was key to ensuring that the resources were useful and accessible for families. PATIENT OR PUBLIC CONTRIBUTION: People with intellectual disabilities and their families contributed to the design of the resources through the co-design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co-facilitated co-design workshops and co-authored this article.

Outcomes for Adults With Intellectual and Developmental Disabilities Receiving Long-Term Services and Supports: A Systematic Review of the Literature.

The impact of long-term services and supports on the quality of life of adults with intellectual and developmental disabilities (IDD) is not well understood given the highly complex nature of researching this topic. To support future research addressing this topic, we conducted a systematic literature review of studies addressing outcomes of adults with IDD receiving long-term services and supports. Results of this review describe current outcomes for adults with IDD who receive long-term services and supports and can be used to inform program evaluation, policy development, and future research.

Norwegian population-based study of effectiveness of vagus nerve stimulation in patients with developmental and epileptic encephalopathies.

OBJECTIVE: Evaluate the long-term efficacy of vagus nerve stimulation (VNS) in patients with developmental and epileptic encephalopathies (DEE) compared with epilepsy patients without intellectual disability (ID). METHODS: Long-term outcomes from a Norwegian VNS quality registry are reported in 105 patients with DEEs (Lennox-Gastaut syndrome [LGS] n = 62; Dravet n = 16; Rett n = 9; other syndromes n = 18) were compared with 212 epilepsy patients without ID, with median follow-up of 88 and 72 months, respectively. Total seizure reduction was evaluated at 6, 12, 24, 36, and 60 months. Effect on different seizure types was evaluated at baseline and last observation carried forward (LOCF). RESULTS: Median monthly seizure frequency at LOCF was reduced by 42.2% (p < 0.001) in patients with DEE and by 55.8% (p < 0.001) in patients without ID. In DEE patients, ≥50% seizure reduction at 6 and 24 months were 17.1% and 37.1%, respectively, and 33.5% and 48.6% for patients without ID. Seizure reduction ≥75% at 60 months occurred in 14.3% of DEE patients and 23.1% of patients without ID. Highest median reduction was for atonic seizures, most notably 64.6% for LGS patients. A better effect was seen at 2 years among DEE patients with unchanged medication compared with those with changed medication (54.5% vs. 35.6% responders, p = 0.078). More DEE patients were reported to have greater improvement in ictal or postictal severity (43.8% vs. 28.3%, p = 0.006) and alertness (62.9% vs. 31.6%, p < 0.001) than patients without ID. For both groups, use of the magnet reduced seizure severity. Hoarseness was the most common adverse effect in both groups. In addition, DEE patients were frequently reported to have sleep disturbance, general discomfort, or abdominal problems. SIGNIFICANCE: Our data indicate that VNS is very effective for atonic seizures. Patients without ID had best overall seizure reduction, however, patients with DEE had higher retention rates probably due to other positive effects. PLAIN LANGUAGE SUMMARY: DEE refers to a group of patients with severe epilepsy and intellectual disability. Many of these patients have restricted lifestyles with frequent seizures. VNS is a treatment option for patients who do not respond well to medicines, either because of insufficient effect or serious adverse effects. Our study shows that VNS is well tolerated in this patient group and leads to a reduction in all seizure types, most notably for seizures leading to fall. Many patients experience other positive effects like shorter and milder seizures, as well as improvement in alertness.

Closing Gaps in Public Services for US Residents With Intellectual and Developmental Disabilities.

This Viewpoint describes existing public health and social service systems for persons with intellectual and developmental disabilities as they transition to adult care, barriers and opportunities faced in service access, and potential actions to narrow these gaps and enhance equity.

Evaluating the Effectiveness of Take it Personal!+ in People With Mild Intellectual Disability or Borderline Intellectual Functioning and Substance Use Disorder: A Multiple Baseline Single-Case Experimental Study.

Individuals with mild intellectual disabilities or borderline intellectual functioning are at increased risk to develop a substance use disorder-however, effective treatment programs adapted to this target group are scarce. This study evaluated the effectiveness of Take it Personal!+ in individuals with mild intellectual disabilities or borderline intellectual functioning and substance use disorder. Take it Personal!+ is a personalized treatment based on motivational interviewing and cognitive-behavioral therapy supported by an mHealth application. Data were collected in a nonconcurrent multiple baseline single-case experimental design across individuals with four phases (i.e., baseline, treatment, posttreatment, and follow-up). Twelve participants were randomly allocated to baseline lengths varying between 7 and 11 days. Substance use quantity was assessed during baseline, treatment, and posttreatment with a daily survey using a mobile application. Visual analysis was supported with statistical analysis of the daily surveys by calculating three effect size measures in 10 participants (two participants were excluded from this analysis due to a compliance rate below 50%). Secondary, substance use severity was assessed with standardized questionnaires at baseline, posttreatment, and follow-up and analyzed by calculating the Reliable Change Index. Based on visual analysis of the daily surveys, 10 out of 12 participants showed a decrease in mean substance use quantity from baseline to treatment and, if posttreatment data were available, to posttreatment. Statistical analysis showed an effect of Take it Personal!+ in terms of a decrease in daily substance use in 8 of 10 participants from baseline to treatment and if posttreatment data were available, also to posttreatment. In addition, data of the standardized questionnaires showed a decrease in substance use severity in 8 of 12 participants. These results support the effectiveness of Take it Personal!+ in decreasing substance use in individuals with mild intellectual disabilities or borderline intellectual functioning.

Action Opportunities to Pursue Responsible Digital Care for People With Intellectual Disabilities: Qualitative Study.

BACKGROUND: Responsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. OBJECTIVE: We aimed to present examples of action opportunities for (1) designing "technology"; (2) shaping the "context" of use; and (3) adjusting the behavior of "users" to guide responsible digital care for people with intellectual disabilities. METHODS: Three cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the "guidance ethics approach." We identified stakeholders' values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. RESULTS: Overall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders' values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, "letting go" to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. CONCLUSIONS: This is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders' values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders' values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.

Supporting active engagement of adults with intellectual disabilities in lifestyle modification interventions: a realist evidence synthesis of what works, for whom, in what context and why.

BACKGROUND: Lifestyle modification interventions for adults with intellectual disabilities have had, to date, mixed effectiveness. This study aimed to understand how lifestyle modification interventions for adults with intellectual disabilities work, for whom they work and in what circumstances. METHODS: A realist evidence synthesis was conducted that incorporated input from adults with intellectual disabilities and expert researchers. Following the development of an initial programme theory based on key literature and input from people with lived experience and academics working in this field, five major databases (MEDLINE, EMBASE, CINAHL, PsycINFO and ASSIA) and clinical trial repositories were systematically searched. Data from 79 studies were synthesised to develop context, mechanism and outcome configurations (CMOCs). RESULTS: The contexts and mechanisms identified related to the ability of adults with intellectual disabilities to actively take part in the intervention, which in turn contributes to what works, for whom and in what circumstances. The included CMOCs related to support involvement, negotiating the balance between autonomy and behaviour change, fostering social connectedness and fun, accessibility and suitability of intervention strategies and delivery and broader behavioural pathways to lifestyle change. It is also essential to work with people with lived experiences when developing and evaluating interventions. CONCLUSIONS: Future lifestyle interventions research should be participatory in nature, and accessible data collection methods should also be explored as a way of including people with severe and profound intellectual disabilities in research. More emphasis should be given to the broader benefits of lifestyle change, such as opportunities for social interaction and connectedness.