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Background: There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Method: Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Results: Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12-23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Conclusions: Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities.

Background: One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). Methods: A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. Results: All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. Conclusions: There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future.

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

Choking is a serious and under-recognised condition for adults with intellectual disability (ID), with health, psychological and potentially fatal consequences. This study aims to determine the prevalence and risk factors for choking in a population-based sample of older adults with ID. 597 adults with ID (mean age: 60 years old; SD = 8) were selected as part of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Information was collected on choking history, comorbidities, challenging behaviours and eating difficulties. Logistic regression was employed to determine risk factors for choking history. 17.3% of participants reported choking history. Eating difficulties, cerebral palsy, visual impairment, being ≥ 65 years old and antipsychotic use increased the odds of choking history. Choking is prevalent in our sample. Managing choking risk requires specific responsibilities from the multidisciplinary team. Risk assessment, training staff and caregivers should be implemented in usual care. [ABSTRACT FROM AUTHOR]

The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either ageing or requiring palliative care. The project took place from June to August 2013 and involved face-to-face interviews and site visits with key academics, government representatives, and community providers in Los Angeles, Chicago, New York, New Jersey, Dublin, Edinburgh, London, Oxford, Cambridge, Bath, Bristol, Birmingham, and Stoke-on-Trent. A priority was placed upon examining how the key features of leading practice models could be implemented within the Australian environment featuring a National Disability Insurance Scheme (NDIS). On the basis of the observations of practice, key points are discussed regarding the potential for improvements to the support of people with intellectual disability within the Australian context of the NDIS. [ABSTRACT FROM AUTHOR]

Background Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare. Method The status of ID data was evaluated in a review of 12 national statistical systems. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed. Results A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data. Conclusions The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved. [ABSTRACT FROM AUTHOR]

BackgroundThis study explores the quality of life (QoL) of individuals with a severe intellectual disability (ID) who had recently moved from an institutional setting (i.e., “residential campus”) to independent housing in the community (i.e., “community living”) and whether aspects of their QoL were perceived to have changed over the course of this move. MethodA qualitative approach was adopted by interviewing the key workers of 8 individuals with an ID (Mage = 37.38, range: 26–44, malen= 6, femalen= 2). An interview tool focusing on aspects of QoL was utilised and the interviews were analysed using thematic analysis (Braun & Clarke, 2006). ResultsTen themes emerged from the analysis that provided insight into the experience of transitioning to community living. ConclusionsThe emotional wellbeing, health, privacy, freedom, and material wellbeing of all the individuals were perceived to have improved, as well as independence, choice, and social opportunities for many. [ABSTRACT FROM PUBLISHER]

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

Background Few empirical studies have compared quality and outcomes for residents with intellectual disability across intentional communities such as those organised by the Camphill communities in Ireland. Method Using a multi-element research protocol developed for an earlier large study, data were gathered about the characteristics of N = 29 participants living in life-sharing residences organised by Camphill, management procedures, and outcomes for residents. Comparable data were available for N = 125 adults in group homes or campus residences. Results Camphill residents reported a smaller size of household, higher staffing ratios, homely living areas, low levels of institutionalised practices such as social distance, reciprocal relationships with houseparents, and well-developed management procedures, as well as less choice, but were not found to be better on a range of other objective measures. Conclusion Although modest in scale, present findings suggest that the value of applying distinctive benefits of life-sharing communities in more typical residential settings for people with intellectual disability should be investigated further to inform current policy debates. [ABSTRACT FROM AUTHOR]