How do people with intellectual disabilities understand friendship? A systematic meta-synthesis.

BACKGROUND: Previous systematic reviews of the relationships of people with intellectual disabilities have included consideration of intimate relationships. In this paper, we report a systematic review of papers describing friendship only. METHOD: A systematic qualitative meta-synthesis of the research exploring experiences of friendship as reported by people with intellectual disabilities. RESULTS: Seven papers met the inclusion criteria for analysis. Three superordinate themes were identified. (1) Reciprocity, 'Someone who helps me, and I help them'. (2) The building blocks of friendships, 'I can tell her some secrets'. (3) Managing friendship difficulties, 'In real life it's much harder'. CONCLUSION: People with intellectual disabilities value friendship and actively engage in reciprocal exchanges. We explore the strengths and limitations of current research, clinical implications, and directions for future research.

Adults With IDD in Supported Accommodation During COVID-19 Lockdown: The Families' Perspective.

The present study aims to understand and describe family caregivers' perceptions and experiences regarding contact and relationships with their adult relatives with intellectual and developmental disabilities (IDD) living in supported accommodation during the COVID-19 lockdown. A qualitative phenomenological approach was applied in which 19 Israeli family caregivers (parents and siblings) were interviewed. Inductive thematic analysis revealed themes at the microsystem level (the resident, the caregiver, and their relationship), and at the mesosystem level (the caregivers' interactions with service providers and other residents' families). The findings highlight the pivotal role of family caregivers in times of uncertainty and the need to develop explicit policies and mechanisms to facilitate family engagement in the residents' lives.

Measurement Invariance in Intellectual and Developmental Disability Research.

Measurement invariance (MI) is a psychometric property of an instrument indicating the degree to which scores from an instrument are comparable across groups. In recent years, there has been a marked uptick in publications using MI in intellectual and developmental disability (IDD) samples. Our goal here is to provide an overview of why MI is important to IDD researchers and to describe some challenges to evaluating it, with an eye towards nudging our subfield into a more thoughtful and measured interpretation of studies using MI.

Improving Quality of Life and Reducing Behavioral Problems of People With Intellectual and Developmental Disabilities Through Deinstitutionalization.

ANTECEDENTS: People with intellectual and developmental disability (IDD) with extensive support needs are more likely to live in segregated and highly institutionalized environments. The aim of this study was to analyze changes in functioning and quality of life for people with IDD and extensive support needs after transitioning to ordinary homes in the community. METHOD: The sample included 54 adults with IDD and extensive support needs, who were assessed at three time points: before transition, six months later, and one year after transition. The Resident Choice Scale, San Martin Quality of Life Scale, Active Support Participation Measure, and the Behavior Problem section of the Inventory for Client and Agency Planning were administered. Partial least squares-structural equation modeling (PLS-SEM) and t-tests for repeated measures were carried out. RESULTS: There were significant improvements in decision-making, participation and independence in daily activities and quality of life, as well as a reduction in the presence and intensity of behavioral problems. CONCLUSIONS: The benefits found in this study support transformation processes towards more inclusive services and professional practices that foster people's rights and feeling of belonging to the community.

A Settings and Systems Approach to Promoting the Health and Wellbeing of People with an Intellectual Disability.

Research has shown that people with an intellectual disability have higher rates of certain preventable health conditions and a higher rate of avoidable mortality relative to the general population. With respect to health behaviours, they also have lower levels of physical activity and poorer nutrition. Despite the increased health needs, this population cohort is less likely to have the opportunity to participate in health promotion programs. The interventions that have been delivered are programmatic and individual in focus and have lacked a broader ecological and settings focus, which makes them very difficult to scale. Health promotion programs designed for the general population, such as lifestyle campaigns, rarely reach people with an intellectual disability. This increases the importance of ensuring that the settings in which they live and engage with are as health promoting as possible. Interventions have been particularly absent in the workplace for people with an intellectual disability. This paper highlights gaps in a settings-and-systems-based approach to promoting the health and wellbeing of people with an intellectual disability, particularly with respect to workplace health promotion. The paper concludes with recommendations for a systems approach that integrates approaches across multiple settings to better promote the health of this population cohort.

Emotion recognition and social functioning in individuals with autism spectrum condition and intellectual disability.

OBJECTIVE: Most previous studies have examined emotion recognition in autism spectrum condition (ASC) without intellectual disability (ID). However, ASC and ID co-occur to a high degree. The main aims of the study were to examine emotion recognition in individuals with ASC and co-occurring intellectual disability (ASC-ID) as compared to individuals with ID alone, and to investigate the relationship between emotion recognition and social functioning. METHODS: The sample consisted of 30 adult participants with ASC-ID and a comparison group of 29 participants with ID. Emotion recognition was assessed by the facial emotions test, while. social functioning was assessed by the social responsiveness scale-second edition (SRS-2). RESULTS: The accuracy of emotion recognition was significantly lower in individuals with ASC-ID compared to the control group with ID, especially when it came to identifying angry and fearful emotions. Participants with ASC-ID exhibited more pronounced difficulties in social functioning compared to those with ID, and there was a significant negative correlation between emotion recognition and social functioning. However, emotion recognition accounted for only 8% of the variability observed in social functioning. CONCLUSION: Our data indicate severe difficulties in the social-perceptual domain and in everyday social functioning in individuals with ASC-ID.

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.

Mental health, challenging behaviour, diagnosis, and access to employment for people with intellectual disabilities in Norway.

BACKGROUND: Studies have found that presence of challenging behaviours and mental health problems limits employment for people with intellectual disabilities. This study investigates the associations between age, gender, living condition, level of intellectual disability, diagnoses, behaviour, mental health, and employment in adults with intellectual disabilities in Norway. METHOD: A cross-sectional community-based survey including 214 adult participants (56% men) with intellectual disabilities. RESULTS: In our sample, 25% had no organised day activity, 27% attended non-work day care, 19% attended sheltered employment, or day care with production, without pay and 29% worked in paid sheltered employment. One participant attended mainstream employment. Moderate and severe/profound level of intellectual disability, possible organic condition and irritability significantly reduced the odds of employment (paid and unpaid). CONCLUSION: Findings suggest unequal access to the sheltered employment that was meant to be inclusive. More individualised evaluation of prerequisites is suggested to further facilitate employment for this group.

Making physical activity fun and accessible to adults with intellectual disabilities: A pilot study of a gamification intervention.

BACKGROUND: Only about 9% of individuals with intellectual disabilities reach the government's physical activity (PA) recommendations. Combining gamification and technology seems particularly promising in overcoming personal and environmental barriers to PA participation. METHOD: Eighteen adults with varying levels of intellectual disabilities completed a pilot study to assess the initial effects of a cycling gamification intervention on levels of PA, fitness, psychosocial outcomes, and challenging behaviours. The study comprised three designs: pre-post single group, AB single-case, and qualitative. Social validity, implementation barriers and facilitators were also explored. RESULTS: Nearly all 18 participants cycled daily. Time and distance cycled daily increase during the intervention while a decrease in stereotyped behaviours was observed. Participants and staff found the intervention enjoyable and socially valid. CONCLUSIONS: Results of the multiple-design study suggest that gamification interventions may be a suitable, enjoyable, and promising way to contribute to PA participation of adults with intellectual disabilities.

Examining cognitive accessibility of the VIA Inventory of Strengths for adults with intellectual disability.

BACKGROUND: We evaluated cognitive accessibility of the VIA Inventory of Strengths Youth short form with adults with intellectual disability for use in strengths-based practice. METHODS: We conducted cognitive testing with adults with intellectual disability (n = 33; M age = 36.2; range: 20.4-64.2). Data were coded for the extent to which (1) items were interpreted correctly; (2) participants endorsed items as describing themselves. We calculated descriptive statistics to evaluate item interpretation and response scale use. RESULTS: On average, 59% of participants interpreted items correctly, 20% misinterpreted items, 14% had mixed interpretations. Positive item endorsement was most associated with the response 'Very much like me' (77%); mixed endorsement was most associated with 'Somewhat like me' (39%); and negative endorsement of items was most associated with 'Not at all like me' (54%). CONCLUSIONS: Revisions are necessary for several items to improve accessibility for adults with intellectual disability and should be made in collaboration with this population.

Exploring the complex cognitive, affective and behavioural processes of individuals with intellectual disabilities in financially abusive situations.

BACKGROUND: Understanding the cognitive processes of individuals with intellectual disabilities in financially abusive situations is critical to develop effective prevention strategies. AIMS: This study investigated how persons with intellectual disabilities define and analyse financially abusive situations, and how they would feel and act in situations that they consider abusive. MATERIALS AND METHODS: Twelve participants with intellectual disabilities participated in a semi-structured interview where they were asked to reflect on three vignettes illustrating financial abuse. We analysed the interviews using thematic analysis. FINDINGS: The findings revealed that individuals with intellectual disabilities considered the type of relationship between the victims and the perpetrators, the behavioural patterns of the perpetrators, and their own experiences when interpreting the situation. Furthermore, they discussed their emotional and behavioural reactions to the vignettes. CONCLUSION: This study has important implications in supporting the autonomy and decision-making rights of persons with intellectual disabilities regarding their finances and developing effective preventions against financial abuse among this population.

Diagnostic Overshadowing of Psychological Disorders in People With Intellectual Disability: A Systematic Review.

Diagnostic overshadowing is a bias in which symptoms of a psychological disorder are falsely attributed to a known diagnosis of intellectual disability. This systematic review evaluated all research on diagnostic overshadowing conducted to date, including dissertations and peer-reviewed journal articles. In total, 25 studies were included in this review. Findings suggest diagnostic overshadowing may not be as ubiquitous as originally believed, with one third of included studies finding no overshadowing. The quality of the evidence was graded as "Low" using the LEGEND tool, with common issues including outdated studies, analogue methodologies, small sample sizes and convenience samples, and inappropriate conducting or reporting of statistical analyses. Implications for the field and recommendations for future research are discussed.

Who is at risk? Adults with intellectual disability at risk of admission to mental health inpatient care.

BACKGROUND: NHS England's Transforming Care agenda aims to reduce the number of adults with intellectual disabilities and autistic adults in mental health hospitals. The aim was to understand the demographic and clinical characteristics of those most at risk of admission. METHOD: A cohort, retrospective study of adults using community intellectual disability services in the North West of England from 2018 to 2022 was undertaken. RESULTS: We compared 211 adults at imminent risk of admission to a mental health hospital and 249 at significant (but not imminent) risk on a validated risk stratification tool. Individuals at significant risk were more likely to have moderate intellectual disability. Individuals at imminent risk were more likely to have diagnoses of mild intellectual disability, autism, personality disorder, or psychosis. CONCLUSION: By furthering our understanding of the clinical characteristics of those most at risk of admission, the findings inform more appropriate targeting of resources.

Reliability and validity of the dynamic risk outcome scales-short version for clients with mild intellectual disabilities or borderline intellectual functioning.

INTRODUCTION: This study investigated the reliability and validity of the dynamic risk outcome scales-short version (DROS-SV). This instrument is developed to monitor treatment progress using dynamic risk factors in clients with mild intellectual disabilities or borderline intellectual functioning and behavioural and/or mental health problems. METHOD: Data were collected from 264 clients who received Flexible Assertive Community Treatment (FACT), a form of intensive outpatient treatment. RESULTS: A principal component analysis showed that there were six components explaining 73.9% of the variance. Furthermore, the DROS-SV showed good internal consistency of its subscales and total score (α > 0.78). Correlating the DROS-SV with the Historical and Clinical subscales of the Historical, Clinical and Future-30 indicated convergent and divergent validity. DISCUSSION: The DROS-SV has good psychometric properties for measuring dynamic risk factors in clients with mild intellectual disabilities or borderline intellectual functioning in FACT teams.

Protective factors against the emotional impact of the pandemic in adults with autism spectrum disorders (ASD) and intellectual disability (ID).

The pandemic has had very negative effects on the mental health of the population, especially in people with autism spectrum disorders (ASD) and intellectual disability (ID). We analyzed whether social communication, quality of life, and anxiety explain changes in the emotional impact of the pandemic in 60 adults with ASD and ID. Correlations between the study variables were analyzed and subsequently a multiple regression analysis was performed. The results show that communication writing, leisure and well-being index, explain 31% of the dependent variable. The well-being index (PWI) contributes significantly to improving the fit of the model, as indicated by ß value. The remaining variables, communication writing and leisure socialization, do not contributed significantly to improving the fit of the model. Quality of life is the only variable that can explain changes in the emotional impact of the pandemic in the study population. This finding should guide future psychoeducational interventions and services for adults.

Behavioural activation for depressive symptoms in adults with severe to profound intellectual disabilities: Modelling and initial feasibility study.

BACKGROUND: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. METHOD: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. RESULTS: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. CONCLUSION: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted.

Adapting psychological interventions for people with severe and profound intellectual disabilities: A behavioural activation exemplar.

BACKGROUND: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. METHOD: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. RESULTS: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities.

Accessibility and feasibility of experience sampling methods for mental health research with people with intellectual disability: Scoping of research and stakeholder views.

BACKGROUND: Experience sampling may be useful for mental health research with people with intellectual disability, and evidence of the potential benefits is starting to emerge. This multiple-method study identified potential avenues for tailoring this method to the needs of people with intellectual disability. METHOD: A scoping review was conducted. Five databases were searched for experience sampling studies involving people with intellectual disability. In addition, seven adults with an intellectual disability tested experience sampling apps with standardised questions about mental health and were interviewed about their experiences in semi-structured interviews. RESULTS: Seven studies were included in the scoping review. Two studies investigated acceptability and feasibility. In the interviews, participants reported on the acceptability, availability, and appropriateness of experience sampling applications. CONCLUSIONS: There are still important gaps in knowledge about acceptability, availability, and appropriateness of experience sampling for this population. Researchers are recommended to tailor experience sampling applications to the needs and interests of individual users.

Perinatal health framework for people with intellectual disability.

We propose a framework for guiding research on perinatal health in people with intellectual disability (ID). We developed this framework based on the perinatal health framework for people with physical disabilities, American Association on Intellectual and Developmental Disabilities conceptual framework of human functioning, disability reproductive justice framework, trauma-informed care, and socio-ecological model. The framework reflects health outcomes of birthing people with ID and their infants that result from interactions of factors across the life course at policy (health, social, and disability policies), community (attitudes, social and physical environment), institutional (health care delivery-related factors, access to information/resources), interpersonal (social determinants of health/histories of trauma, social support, interactions with service-providers), and individual levels (demographics, intellectual functioning, adaptive behavior, health conditions, genetic factors, psychosocial factors, health behaviors). This framework will facilitate research to identify factors leading to perinatal health disparities in people with ID and development and evaluation of resources to address them.