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Background: People with intellectual disabilities are more likely to experience sleep problems, which can affect quality of life, physical health, mental health and well‐being. Methods: An integrative literature review was conducted to investigate what is known about behavioural sleep disturbances in people with an intellectual disability. The search used the following databases: Scopus, PsycInfo and Cinahl, to find papers published since 2015. Results: Within intellectual disability research, sleep appears as a common issue due to its high prevalence, negative relationships with an individual's physical and mental health, their quality of life, and impact of sleep problems on family or carers. The growing evidence base appears to support the use of behavioural, lifestyle and pharmacological interventions to improve sleep in people with an intellectual disability. Conclusion: A wide array of literature provides evidence that people with intellectual disabilities are affected by and need support with their sleep. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. Method: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID‐19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. Results: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. Conclusions: Although relatives' QoL remained stable, the pandemic poses non‐negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support. [ABSTRACT FROM AUTHOR]

COVID‐19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world's children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID‐19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics. [ABSTRACT FROM AUTHOR]

Accessible Summary: In the past 30 years, many people with (intellectual) learning disabilities have been moved out of large "institutions" and into their own home in their local communityThese people are now often between 30 and 50 years oldWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community what things, including work, that they enjoyed doingWe asked people with learning disabilities aged between 30 and 50 and who are living in their local community whether they felt that they could make decisions about their lifeWe found out the things that make their life good, and also what might stop people enjoying their lifeWe learnt that people with learning disabilities should receive more support to assist them before they retireWe learnt that people with learning disabilities still need more support and choice around who they live with Background: This study investigated perceived quality of life (QoL) of community‐dwelling middle‐aged adults (30–50 years) with an intellectual disability and/or developmental disability living in rural or urban areas in New South Wales and Queensland, Australia. The specific aim of the current paper was to provide a descriptive evidence base of QoL and its specific domains by various key demographic characteristics of middle‐aged individuals. This cohort is likely to have either experienced or reached adulthood during and after large‐scale deinstitutionalisation in Australia. Methods and procedures: A cross‐sectional design was utilised, based on the QoL‐Q survey, testing domains of satisfaction; Competence/Productivity; Empowerment/Independence; and social belonging/community integration. The survey included demographic questions and was distributed to participants through disability support agencies across two states. The final sample included 291 respondents. Results: The overall QoL‐Q scores ranged from 3.0 to 29.5 (Mean = 20.4, SD, 4.1), with considerable variation in mean scores both across and within domains. The two demographic areas that showed greatest predictive value for QoL were work status and accommodation issues. The loss of agency and control in choice of co‐residents influenced perceived QoL for empowerment and independence domain of QoL‐Q. Conclusions: The findings highlight QoL issues associated with policy decisions and support programmes for middle‐aged adults. The two key recommendations arising from the project are that future planning for post‐retirement or reduced working hours needs to commence at a much younger age than currently expected, and more attention needs to focus on facilitating individual decision‐making and choice within shared accommodation options. [ABSTRACT FROM AUTHOR]

Accessible summary: Dialectical Behaviour Therapy (DBT) is a therapy to help people manage their feelings.We ran a DBT group for people with an intellectual disability. The group seemed to help people feel better and manage their feelings, even after the group ended.The group was 2 years ago. We talked to three people who went to the group to see what people still remembered from the group and if DBT was still helping them.We think having a top‐up session might help people to remember and practise ideas from the group. Background: This paper reports quantitative and qualitative follow‐up data from three participants who attended a Dialectical Behaviour Therapy (DBT) group for people with an intellectual disability. Materials and Methods: Quantitative data regarding psychological well‐being, psychological distress (measured using the Psychological Therapies Outcome Scales; PTOS) and quality of life (measured using the Health of the Nation Outcome Scales—Learning Disability; HONOS‐LD) are reported for pre‐group, post‐group and at 6‐month and 2‐year follow‐up. Interviews were conducted with participants post‐group and at 2‐year follow‐up. Data were analysed using thematic analysis. Results: Improvements in scores on measures of psychological well‐being, psychological distress and quality of life appear to be maintained at 6‐month follow‐up, but scores at 2‐year follow‐up suggest a return to baseline. Qualitative self‐report data suggest a number of interesting ways participants adapted and individualised techniques from the group, as well as suggesting possible barriers to maintaining change in the longer term. Conclusions: Clinical implications are considered to improve effectiveness of similar interventions, as well research implications in order to improve knowledge about the longer term impact of group DBT interventions. [ABSTRACT FROM AUTHOR]

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self‐determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID‐19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross‐sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under‐reporting of prevalence of IDD and validity of proxy‐reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system. [ABSTRACT FROM AUTHOR]

Issue Addressed: Intergenerational mentoring is emerging as a way to provide meaningful engagement and improve wellbeing for older adults in retirement. However, there is little, if any, Australian research concerning the benefits for older mentors involved in such mentoring. This study aims to investigate the experiences of older male mentors involved in an intergenerational mentoring program with young men with intellectual disability and identify any benefits to physical and mental health and generativity.Methods: This study used a mixed methods concurrent triangulation design. Quantitative outcomes data were collected pre and postintervention using the SF-36 and Loyola Generativity Scale. Qualitative data were collected using a single-interview approach. Mentors and mentees took part in a 6-month mentoring program based in Australian Men's Sheds.Results: No significant changes were seen in physical health and generativity. Investigation of mental health scores revealed a significant improvement in scores on the mental health subscale. Qualitative analysis revealed the main theme as "Learning together through a relational and practical routine" and four sub-themes.Conclusion: Men's Shed intergenerational mentoring programs present an environment for older, retired men to express generativity, improve their mental health and bond with younger generations.So what? The potential wellbeing implications for older men through intergenerational mentoring should form the basis of future research and intervention. [ABSTRACT FROM AUTHOR]

Background: The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability‐care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability. Methods: We performed a quasi‐experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care‐as‐usual (CAU; n = 111). Using three measures, we assessed the staff‐reported quality of life of older people with intellectual disability. Results: DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to −0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results. Conclusion: The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study. [ABSTRACT FROM AUTHOR]

Background We know little about the correlates of mental health problems in youth with severe and profound intellectual disability (ID), as most research includes these youth within larger samples that include greater proportions of mild and moderate disability. The purpose of the current study was to identify the child, family and psychosocial characteristics that were associated with the presence of psychiatric diagnoses and maladaptive behaviour in youth with severe ID. Methods Participants were 141 parents of youth with severe or profound levels of ID, 4 to 18 years of age. The mean age of children was 11.04 years ( SD = 3.38), with 68% male and 39% with autism spectrum disorder (ASD). Parents completed a primarily online survey of child and family characteristics, negative life events, family quality of life and their own mental health. Results Logistic regression analyses revealed that youth with a psychiatric diagnosis had higher levels of adaptive behaviour and experienced more negative life events than youth without psychiatric diagnosis, while the presence of clinically significant maladaptive behaviour was related to higher levels of adaptive behaviour, parents' mental health problems and lower family quality of life. Child age, gender, ASD status and financial hardship were not related to either outcome variable. Conclusions Youth with severe and profound ID who experience psychosocial stressors are more likely reported to have mental health problems than youth without such stressors. It is likely that a combination of child and family based interventions, along with with policies that address larger systemic issues of social adversity, are needed to promote mental health and treat psychopathology when it arises. [ABSTRACT FROM AUTHOR]