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

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

The utility of behavioral activation therapy in addressing emotional problems of two depressed students with borderline intellectual disability: A case study.

PURPOSE: Intellectual disability is one of the neurodevelopmental disorders. Studies indicated that depression and anxiety are the most prevalent emotional problems among the people with intellectual disability. The aim of this study was to investigate the utility of behavioral activation therapy in addressing emotional problems of two depressed students with borderline intellectual disability. METHOD: This study is a single-subject design with multiple baseline and one month follow-up. Two students with borderline intelligence underwent behavioral activation therapy for 12 sessions. Beck Depression Inventory-Second Edition, Beck Anxiety Inventory, Oxford Happiness Inventory and Rosenberg Self-Esteem Scale were used. Data were analyzed using visual inspection of graphed data, changes in trends, improvement percentage and effect size. FINDINGS: The findings of this study support the utility of behavioral activation therapy in addressing the emotional problems of two depressed students with borderline intellectual disability. CONCLUSION: Behavioral activation therapy has had favorable outcomes in reducing depression and anxiety in depressed students with borderline intellectual disabilities.

Item-validity analysis of the SED-S in a multicentre study of adults with intellectual disabilities.

BACKGROUND: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development-Short (SED-S). METHOD: The sample included 612 adults with intellectual disabilities (Mage = 37.35, SDage = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined. RESULTS: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages. DISCUSSION: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties.

Evaluation of adapted parent training for challenging behaviour in pre-school children with moderate to severe intellectual developmental disabilities: A randomised controlled trial.

OBJECTIVES: There is limited evidence on the effectiveness of parenting interventions to improve disruptive behaviour in children with intellectual developmental disabilities. This clinical trial evaluated whether an adapted group parenting intervention for preschool children with intellectual developmental disabilities who display challenging behaviour is superior to treatment as usual in England. STUDY DESIGN: 261 children aged 30-59 months with moderate to severe intellectual developmental disabilities and challenging behaviour were randomised to either the intervention (Stepping Stones Triple P) and treatment as usual or treatment as usual alone. The primary outcome was the parent-rated Child Behaviour Checklist at 52 weeks after randomisation. A health economic evaluation was also completed. RESULTS: We found no significant difference between arms on the primary outcome (mean difference -4.23; 95% CI: -9.99 to 1.53; p = 0.147). However, a subgroup analysis suggests the intervention was effective for participants randomised before the COVID-19 pandemic (mean difference -7.12; 95% CI: -13.44 to -0.81; p = 0.046). Furthermore, a complier average causal effects analysis (mean difference -11.53; 95% CI: -26.97 to 3.91; p = 0.143) suggests the intervention requires participants to receive a sufficient intervention dose. The intervention generated statistically significant cost savings (-£1,057.88; 95% CI -£3,218.6 to -£46.67) but the mean point estimate in Quality Adjusted Life Years was similar in both groups. CONCLUSION: This study did not find an effect of the intervention on reducing challenging behaviour, but this may have been influenced by problems with engagement. The intervention could be considered by services as an early intervention if families are supported to attend, especially given its low cost.

Understanding capabilities, opportunities and motivations to engage in physical activity for adults with intellectual disabilities: A qualitative evidence synthesis.

BACKGROUND: There is a paucity of theory-informed physical activity research with adults with intellectual disabilities. This study aimed to address this by synthesising existing literature and applying the COM-B model to understand capabilities, opportunities and motivations. METHODS: A qualitative evidence synthesis was conducted and reported in accordance with PRISMA guidelines and the ENTREQ. Three databases were systematically searched up to and including February 2022. Qualitative research relating to the physical activity of adults with intellectual disabilities were included. Thematic synthesis was conducted with themes mapped onto the COM-B model. RESULTS: Twenty-five studies were included. Influences of physical activity were identified and mapped onto the COM-B model, which also included COM-B influences of social support provided by caregivers. CONCLUSIONS: There are many complex influences of physical activity for adults with intellectual disabilities. Researchers should consider the influences contributing to caregivers' capacity to support physical activity.

EFFECT OF THE CORRECTIONAL APPROACH ON THE REGULATION OF NEURAL FUNCTIONS IN CHILDREN WITH MENTAL DISABILITIES WITH INTERHEMISPHERIC BRAIN ASYMMETRY.

The degree of asymmetry in humans and the complication of mechanisms of interhemispheric interaction are formed mainly in the process of learning, but the impact of developmental teaching methods on the regulation of nervous functions in children with intellectual disability has been little developed. The aim of the work is to study the influence of developmental teaching methods on the regulation of nervous functions in children with mental development disorders and interhemispheric asymmetry of the brain. The information obtained in the data must be taken into account when organizing the learning process in the elementary school when working with mentally retarded children, when forming classes, when choosing programs, methods of teaching, when organizing psychological and pedagogical support. The age features of the brain associated with advanced development of right hemispheric functions are almost not used in it. Meanwhile, the active use of opportunities of the right hemispheric way of processing information, especially in elementary school, promotes the development of the child's abilities, allows to predict and increase the efficiency of school training. The functional contributions of the right and left hemispheres to the formation of the human psyche are assumed to be different because the hemispheres in their paired work function differently in time. The paired work is carried out in the present tense, so that the right hemisphere relies on the past, the left on the future tense. Therefore, the preservation of paired hemispheric functioning and structural integrity of the brain is the main condition, without which full-fledged mental activity cannot be formed.

Reflections on How What We Say, Do, and Acknowledge as Intellectual and Developmental Disability Researchers Matters.

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

College Students With Intellectual and Developmental Disabilities' Experiences, Conception, and Development of Emotional Wellness.

This study aimed to understand the ways in which college students with intellectual and developmental disabilities (IDD) experience and develop their understanding of emotions and emotional wellness. Semi-structured interviews with college students with IDD were conducted. The research team utilized consensual qualitative research (CQR) to analyze interviews and came to consensus in generating domains, core ideas, and a cross-analysis to answer the research question, "What are the experiences of college students with IDD in developing an understanding of emotions and emotional wellness?" Findings suggest college students with IDD have experience developing and maintaining their emotional wellness, though they may experience barriers prior to and during college enrollment. Limitations and implications for future research are discussed.

What makes life better or worse: Quality of life according to people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? METHOD: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses. RESULTS: The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life. CONCLUSIONS: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.

Trust and quality of life: A study in organizations for individuals with intellectual disability.

BACKGROUND: Based on social exchange within organizations for individuals with intellectual disability, we explore trust between supervisors and team members and its association with organizational performance oriented to the quality of life of service users. AIMS: We examine the mediating role of teams' trust in supervisors in the relationship between supervisors' trust in teams and performance focused on improving the quality of life of service users. We expect teams to reciprocate supervisors' trust by reporting greater levels of trust in supervisors and better performance. METHOD AND PROCEDURES: We tested this trust-mediated model with a sample of 139 supervisors (reporting trust in their teams), 1101 team members (reporting trust in their supervisors), and 1468 family members (reporting performance focused on quality of life). OUTCOMES AND RESULTS: Our findings confirmed a cross-level mediation process. Supervisors' trust in their teams leads to teams' trust in their supervisors. This trust at the team level in turn is positively associated with organizational performance oriented to improving the quality of life of individuals with intellectual disability, reported by family members. CONCLUSIONS AND IMPLICATIONS: Our study builds on and extends an established stream of research on trust theory by considering trust and its association with performance focused on quality of life.

Violence against parents perpetrated by adolescent siblings of individuals with intellectual disability in South Korea.

BACKGROUND: Few studies have focused on the daily hassles among adolescent siblings living with individuals with intellectual disability (IwID) and the resulting conflicts between family members. The pathway from stress (hassles) to adolescents' violent acts has been largely ignored. OBJECTIVE: This study examined the link between hassles (independent variable) and violence against parents (dependent variable), with aggression as a mediator and social support as a moderator. PARTICIPANTS: Data were collected from November 2018 to February 2019 in Seoul, Gyeonggi Province, and Incheon City. Participants were 303 adolescent siblings of IwID (male: 47.2 %; female: 52.1 %). METHODS: Descriptive analysis was conducted using SPSS 24.0 and mediating pathways were determined using SPSS Macro 25.0. To verify the moderating role of social support, the entire sample was divided into two groups based on the mean value of social support and the mediating model was analyzed. RESULTS: In the low social support group (n = 140), the direct effect was not significant (ß = 0.0111, 95 % CI = -0.0044 to 0.0266), but the indirect effect was maintained (ß = 0.0096, 95 % CI = 0.0005 to 0.0234). However, in the high support group (n = 118), neither the direct effect (ß = 0.0106, 95 % CI = -0.0162 to 0.0373) nor the indirect effect (ß = 0.0126, 95 % CI = -0.0013 to 0.0301) was significant. Social support as a moderator was statistically significant compared with different paths in the two-group analysis. CONCLUSIONS: Counselling interventions are needed to alleviate the link between hassles and adolescent violence against parents through aggression.

An Ethnographic Study Concerning the Implementation of Education on Ageing for Older Adults with Mild Intellectual Disability: The Perspective of the Educators.

Despite the fact that longevity in people with intellectual disability has increased at least as much as in the general population, there is a dearth of interventions related to ageing for these older people. Therefore, this study investigated educators' implementation strategies in a new tailor-designed educational intervention with the goal of supporting the process of ageing for people with mild intellectual disability. An ethnographic research design was employed, including participant observations, field notes, and 15 ad hoc interviews with educators, spread over two years in four towns. The strategies used for facilitating learning about ageing were expressed in the two themes promoting social togetherness through everyone's participation and learning together and from each other through recognition and consolidation. These strategies were applied to create a learning environment characterised by a good atmosphere and respectful interaction. Learning together involved consolidation through repetition, group discussions, the use of visual learning materials, and study visits. This new educational intervention about ageing is promising, but less resource-intensive interventions should also be developed and preferably integrated into the disability service. Before concluding whether this education supports the ageing process, it needs to be evaluated from the perspective of people with intellectual disability.

The relationship of stereotypes, social distance and sexuality knowledge with attitudes towards sexuality of people with mild intellectual disabilities.

BACKGROUND: The present study examines the relationship between stereotypical beliefs about people with intellectual disabilities, desire for social distance, and general knowledge about human sexuality with attitudes towards the sexuality of adults with mild intellectual disabilities. METHOD: Two hundred fifty participants from staff, family and community samples completed an online set of questionnaires. RESULTS: Higher agreement with stereotypical beliefs and lower sexual knowledge were associated with less normalising and more paternalistic attitudes towards the sexuality of adults with mild intellectual disabilities. Higher agreement with stereotypical beliefs was also associated with more negative attitudes. On the other hand, willingness to interact with these adults was associated with more normalising and less paternalistic attitudes. CONCLUSIONS: Interventions that aim to support adults with intellectual disabilities in relation to their sexuality should also address the perceptions of their support network towards them as individuals with disabilities, as well as their knowledge about sexuality.

Measurement of basic psychological needs for physical activity participation for college students with intellectual disabilities: A validation study.

BACKGROUND: Measurement instruments to understand self-determined motivation towards physical activity among college students with intellectual disabilities are needed to develop programs to support physical and psychological health and well-being. The purpose of the current study was to validate a modified questionnaire measuring basic psychological needs towards physical activity among college students with intellectual disabilities. METHODS: A total of 108 college students with intellectual disabilities completed the modified questionnaire. Validity and reliability of the questionnaire was examined. RESULTS: Confirmatory factor analysis demonstrated a six-factor model had good model fit. Cronbach's alpha values showed acceptable reliability evidence of the instrument as a whole, although some alpha values in subdomains of the instrument were below acceptable values. CONCLUSION: The modified questionnaire was found to have acceptable validity evidence. Further studies are needed with refinement of answer options and the addition of more questions to increase reliability.

Aging Well With a Lifelong Disability: A Scoping Review.

BACKGROUND AND OBJECTIVES: Existing literature highlights notable health and social inequalities for people aging with a lifelong disability and the need for research to better understand how we can support this group to age well. This scoping review mapped existing literature related to "aging well" in people with lifelong disabilities. RESEARCH DESIGN AND METHODS: Five scientific databases and gray literature sources were searched for studies related to "aging well" and "lifelong disability" (defined as a disability that a person had lived with since birth or early childhood). RESULTS: We identified 81 studies that discussed aging well with a lifelong disability, with most (70%) focusing on intellectual disabilities. Two themes captured existing research on aging well with a lifelong disability: (1) framing aging well with a lifelong disability, which included the ways that people with lifelong disability, their supporters, and existing research frame aging well for this group and (2) supporting people to age well with a lifelong disability, which involves the micro-, meso-, and macro-level factors where research suggests interventions to facilitate aging well could be situated. DISCUSSION AND IMPLICATIONS: This synthesis highlights how aging well is currently framed in the literature and where interventions to improve aging well in this group could be situated. Literature highlights the importance of considering multilevel interventions to improve aging well. Evidence gaps include the lack of research conducted with groups other than those with intellectual disabilities and the need for more research examining aging well interventions.

The role of motivation in shaping social inclusion of people with intellectual disabilities in physical-sports activity contexts.

The present study aims to test a model in which basic psychological needs (BPN) satisfaction in physical-sport activity contexts is associated with self-determined motivation, which, in turn, would predict the social inclusion of people with intellectual disabilities. A total of 286 people with intellectual disabilities (53.5% men) who reported engaging in physical-sport activities responded to a validated questionnaire about the satisfaction of their BPN, motivation (using the Self-determination index [SDI]), and social inclusion. A Pearson's bivariate correlation and structural equation modeling were conducted. The resulting model was reanalyzed in a multigroup analysis to test its invariance across self and proxy reports. Positive associations were found between the satisfaction of the BPN and the SDI. However, the SDI and social inclusion were positively associated only in proxy reports (ßself = 0.07 vs. ßproxy = 0.30). The tested model established positive relationships between the BPN and SDI in autonomy (ßself = 0.21 vs. ßproxy = 0.18), competence (ßself = 0.47 vs. ßproxy = 0.53), and relatedness (ßself = 0.21 vs. ßproxy = 0.23). Further research is needed to understand the factors leading to discrepancies between participants and proxies when relating the SDI to social inclusion in the context of physical-sport activity. However, the results obtained suggest that it would be optimal to develop contexts of practice for people with intellectual disabilities in which the satisfaction of their BPN is favored and that this has a positive impact on their motivation and social inclusion.

The resilience of parents of children with intellectual disabilities: An effort from self-regulation and career burnout.

BACKGROUND: Researchers have made great efforts to help parents of children with intellectual disabilities overcome the stress and burden. Learning to be resilient is one effective strategy. AIM: This study explores resilience among parents of children with intellectual disabilities and how career burnout and self-regulation relate to parents' resilience in mainland China. METHODS: The Burnout Scale, the Self-Regulation Scale and the Resilience Scale were administered to 324 parents of children with intellectual disabilities. RESULTS: Results showed that career burnout significantly negatively influenced resilience (ß = -0.269, p = 0.000), while self-regulation significantly positively influenced resilience (ß = 0.754, p = 0.000). In addition, self-regulation moderated the relationships between career burnout and resilience (ß = 0.176, p = 0.003). CONCLUSION: The findings offer valuable insights for enhancing the resilience of parents of children with intellectual disabilities.

Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.

BACKGROUND: To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice. METHODS: This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis. RESULTS: Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information. CONCLUSIONS: This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately.

The reliability of Hebb repetition learning and its association with language and reading in adolescents with intellectual disabilities.

Hebb repetition learning (HRL) refers to neurodevelopmental processes characterised by repeated stimulus exposure without feedback, which result in changes in behaviour and/or responses, e.g., long-term learning of serial order. Here, we investigate effects of HRL on serial order memory. The present research aimed to assess the reliability of new HRL measures and investigate their relationships with language and reading skills (vocabulary, grammar, word reading) in adolescents with intellectual disability (ID). A comparison group of children of similar mental age with typical development (TD) was also assessed. ID and TD groups were tested on HRL tasks, evaluating test-retest and split-half reliability. The relationship between HRL and language and reading was analysed after accounting for the influence of mental age and verbal short-term memory. The HRL tasks displayed moderate test-retest (and split-half) reliability, HRL tasks with different stimuli (verbal, visual) were related, and we identified issues with one method of HRL scoring. The planned regression analyses failed to show relationships between HRL and language/reading skills in both groups when mental age, a very strong predictor, was included. However, further exploratory regression analyses without mental age revealed HRL's predictive capabilities for vocabulary in the ID group and reading in the TD group, results which need further investigation and replication. HRL displays promise as a moderately reliable metric and exhibits varied and interpretable predictive capabilities for language and reading skills across groups.