This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

• Klíčová slova
• Dementia, Down syndrome, caregivers, caregiving, intellectual disability, narratives,
• MeSH
• demence komplikace   psychologie   MeSH
• lidé středního věku MeSH
• lidé MeSH
• mentální retardace komplikace   psychologie   MeSH
• osoby pečující o pacienty psychologie   MeSH
• senioři MeSH
• zdravotní politika MeSH
• Check Tag
• lidé středního věku MeSH
• lidé MeSH
• mužské pohlaví MeSH
• senioři MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Research Support, U.S. Gov't, P.H.S. MeSH

Background: The World Health Organization has launched a program to promote Global Cooperation on Assistive Technology (GATE) to implement those parts of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) referring to assistive technology and products. A particular vulnerable group deeply affected by health inequity affecting access to assistive products are people with intellectual disabilities.Objective: The objective of this study is to understand the barriers and facilitators to effectively access and continuously use essential assistive products for people with intellectual disabilities.Materials and methods: Face-to-face interviews with 15 adults with a mild to profound intellectual disability and 15 providers of assistive products were conducted to gain insights about current use, needs, knowledge, awareness, access, customization, funding, follow-up, social inclusion, stigma and policies around assistive products and intellectual disability. The technique of constant comparative analysis was used to analyze the data.Results and conclusion: An overview of factors is presented that fit within seven domains for access and eight domains for continuous use of assistive products for people with intellectual disabilities. It illustrates that access and continuous use are influenced by different barriers and facilitators. These different influences should be taken into account in country policies and frameworks that seek to implement the UNCRPD through assistive technology.Implications for rehabilitationProactive assessment for assistive products by health professionals is rare and the vast majority of people with intellectual disabilities depend on carers to signal the need .A lack of education for carers around available assistive products and the benefits of assistive products for people with intellectual disabilities may lead to an underutilization for this group.The paternalistic attitude of care providers towards people with intellectual disabilities limits access and use to certain (high-tech) assistive products.The segmented and disjointed aspect of public funding to support assistive products found in this study is a key issue for policymakers who aspire to adhere to implementing the UNCRPD equally in all areas of their country.

• Klíčová slova
• Intellectual disability, access, assistive products, assistive technology, health inequity,
• MeSH
• chráněné bydlení * MeSH
• dostupnost zdravotnických služeb * MeSH
• lidé středního věku MeSH
• lidé MeSH
• mentální retardace patofyziologie   MeSH
• pomůcky pro sebeobsluhu zásobování a distribuce   MeSH
• Check Tag
• lidé středního věku MeSH
• lidé MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• práce podpořená grantem MeSH

Transition to adulthood for young people with intellectual disabilities and developmental disabilities (IDD) has been given significant attention in research, policy development and practice. The aim of this paper was to explore how a recently developed theoretical outcomes-based framework for measuring the quality of services for people with disabilities could potentially be useful in conceptualizing and supporting successful transition to adulthood. The theoretical discussion draws on both the scoping review and template analysis that was used to develop the Service Quality Framework and on a separate study synthesizing expert completed country templates and literature review which included models of and research on successful transition to adulthood. Synthesis identified that using a quality of life outcomes focused framework of Service Quality could be mapped onto and extend current thinking on what is seen as successful transition to adulthood by putting the focus on successful transition as people with IDD moving towards having similar opportunities and quality of life as other adults without disabilities living in the same community/society. Implications of a more wide-ranging definition and holistic view for both practice and future research are discussed.

• Klíčová slova
• education, intellectual and developmental disabilities, measurement, quality of life, quality of support services, transition,
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH

Background: This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

• Klíčová slova
• COVID-19, Caregivers Carers, Coronavirus, Health Disparity, Intellectual Disability, Intellectual and Developmental Disability, Pandemic,
• Publikační typ
• časopisecké články MeSH

BACKGROUND: Mental health is a public health issue for European young people, with great heterogeneity in resource allocation. Representative population-based studies are needed. The Global Burden of Disease (GBD) Study 2019 provides internationally comparable information on trends in the health status of populations and changes in the leading causes of disease burden over time. METHODS: Prevalence, incidence, Years Lived with Disability (YLDs) and Years of Life Lost (YLLs) from mental disorders (MDs), substance use disorders (SUDs) and self-harm were estimated for young people aged 10-24 years in 31 European countries. Rates per 100,000 population, percentage changes in 1990-2019, 95% Uncertainty Intervals (UIs), and correlations with Sociodemographic Index (SDI), were estimated. FINDINGS: In 2019, rates per 100,000 population were 16,983 (95% UI 12,823 - 21,630) for MDs, 3,891 (3,020 - 4,905) for SUDs, and 89·1 (63·8 - 123·1) for self-harm. In terms of disability, anxiety contributed to 647·3 (432-912·3) YLDs, while in terms of premature death, self-harm contributed to 319·6 (248·9-412·8) YLLs, per 100,000 population. Over the 30 years studied, YLDs increased in eating disorders (14·9%;9·4-20·1) and drug use disorders (16·9%;8·9-26·3), and decreased in idiopathic developmental intellectual disability (-29·1%;23·8-38·5). YLLs decreased in self-harm (-27·9%;38·3-18·7). Variations were found by sex, age-group and country. The burden of SUDs and self-harm was higher in countries with lower SDI, MDs were associated with SUDs. INTERPRETATION: Mental health conditions represent an important burden among young people living in Europe. National policies should strengthen mental health, with a specific focus on young people. FUNDING: The Bill and Melinda Gates Foundation.

• Klíčová slova
• Europe, Mental disorders, Mental health, Self-harm, Substance use, Young people,
• Publikační typ
• časopisecké články MeSH