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type:Journal Article, People with Intellectual disabilities understand Pictograms that require learning has been reported to be difficult. They exhibit difficulties under-standing, including reading and writing, textual information, and often use images in the form of Pictograms to circumvent this difficulty.Against the backdrop of research by AAC (Augmentative and Alternative Communication), TEACCH (Treatment and Education of Autistic and related Communication handicapped Children), and others, Pictograms have been used as tools for communication from school age onward. Thus, Pictograms displayed in public spaces are public support tools that enable people with intellectual disabilities to understand information. / However, in Japan, when some Pictograms were revised or added in preparation for the 2020 Tokyo Olympics in 2017, and paired comparison survey was carried out by the Japanese JIS standard Pictograms committee to determine whether JIS or ISO Pictograms were easier to understand. Some people with disabilities were included in the study, but only 20 out of 121 responded (16.5%), and the data was decided to be used only as a reference. / From the results of the author's previous surveys of people with Intellectual Disabilities, pictograms they understand are also well understood by people without disabilities. / In this study, 19 adults with intellectual disabilities and Pictograms of 16items from JIS for guidance were subjected to a com-prehension survey where they recalled intended actions. As a result, graphic elements that increase comprehension were identified in each Pictogram. The study also suggested an association between comprehensible graphic elements and IQ. / Specifically, five graphic elements influence the comprehension of Pictograms: 1. person symbolizing location, 2. real orien-tation, 3. motion line (: effect line representing movement, emphasis, sound, etc.) 4. location element, and 5. arrow: the axis length affects the degree of comprehension. It was suggested

Purpose: The paper intends to do a scoping review of people with intellectual disabilities in emergency care where this group seems to face access barriers and discrimination. It analyses the conceptual and methodological framework for studies examining the former.Methods: A scoping review is conducted. The studies' quality is assessed via a checklist developed by the authors drawing on a compilation of common assessment tools for study quality.Results: Fourteen quantitative studies fulfil the inclusion criteria for further analysis. Summary measures are extracted. Results are synthesized with Andersen's Behavioral Model of Health Service Use. Studies employ a combination of variables attributable to different aspects of population characteristics and health behavior.Conclusion: Most studies seek to quantify or predict emergency care overuse by people with intellectual disabilities. Future studies should also take patients' poor health or treatment outcomes and their perspectives into account.

Support staff and relatives are uncertain about multiple aspects of the sexuality of people with intellectual disabilities. Given that their attitudes embody positive and negative views, they can respectively support and restrict free sexual expression among people with intellectual disabilities and their potential for (intimate) relationships. A qualitative systematic literature review was conducted on the attitudes of support staff and relatives toward the sexuality of people with intellectual disabilities. A systematic search strategy was deployed across seven databases. The identified articles were screened on predetermined inclusion and exclusion criteria, and assessed on quality, which resulted in 31 included studies. A metasynthesis of these studies resulted in two major themes emerging, namely (a) attitudes toward the sexuality of people with intellectual disabilities, and (b) attitudes toward the sex education and support. Themes represented both positive and restrictive attitudes among support staff and relatives. The findings suggest that despite a general acceptance of the sexual rights of people with intellectual disabilities, certain forms of sexuality were approached more cautiously. Moreover, the sexual needs of some subgroups of people with intellectual disabilities received scarce attention. Those support staff and relatives holding rather restrictive attitudes appear to emphasize sexual risks. Finally, support staff and relatives stressed the importance of providing sex education and support for people with intellectual disabilities, while, simultaneously, expressing insecurity over the subject. The findings can help to improve the support provided to support staff and relatives to promote sexual health among people with intellectual disabilities.

Jana York,1 Yvonne Wechuli,2 Ute Karbach3 1Faculty of Rehabilitation Sciences, TU Dortmund University, Dortmund, Germany; 2Faculty of Human Sciences, University of Kassel, Kassel, Germany; 3Institute of Medical Sociology, Health Services Research and Rehabilitation Science, University of Cologne, Cologne, GermanyCorrespondence: Jana York, Faculty of rehabilitation sciences, TU Dortmund University, Emil-Figge-Str. 50, Dortmund, 44227, Germany, Tel + 49 (0)231 755 4651, Fax +49 (0)231 755-5893, Email jana.york@tu-dortmund.dePurpose: The paper intends to do a scoping review of people with intellectual disabilities in emergency care where this group seems to face access barriers and discrimination. It analyses the conceptual and methodological framework for studies examining the former.Methods: A scoping review is conducted. The studies’ quality is assessed via a checklist developed by the authors drawing on a compilation of common assessment tools for study quality.Results: Fourteen quantitative studies fulfil the inclusion criteria for further analysis. Summary measures are extracted. Results are synthesized with Andersen’s Behavioral Model of Health Service Use. Studies employ a combination of variables attributable to different aspects of population characteristics and health behavior.Conclusion: Most studies seek to quantify or predict emergency care overuse by people with intellectual disabilities. Future studies should also take patients’ poor health or treatment outcomes and their perspectives into account.Keywords: emergency care, hospital, barriers to health care, health care system, health inequality

This study aimed to examine the level of discrimination against people with intellectual disabilities during COVID-19, and assessed stereotypes, levels of familiarity with people with intellectual disabilities, and personal experiences with COVID-19, as potential correlates. A cross-sectional study was conducted using a large sample from the Dutch population (n = 1,797). Salient stereotype factors of people with intellectual disabilities were ‘Friendly’ and ‘In need of help’ but not ‘Give nuisance’. Those respondents who were unfamiliar with people with intellectual disabilities in real-life demonstrated higher levels of discrimination, perceiving them as more of a nuisance and as being less in need of help, in comparison to those who were more familiar. People with intellectual disabilities were judged by an ambivalent set of stereotypes during the COVID-19 pandemic that were in line with pre-COVID-19 findings and as such seemed to be fairly persistent and robust. There is a pressing need to both raise awareness of stereotypes towards and discrimination against people with intellectual disabilities via advocacy and education, and to facilitate positive encounters.

Background: We sought to assess diet quality among people with intellectual disabilities or borderline intellectual functioning, living in residential facilities or receiving day care. Methods: We measured diet quality using the Dutch Healthy Diet Food Frequency Questionnaire (DHD) and compared this between participants with (n = 151) and controls without intellectual disabilities (n = 169). Potential correlates of diet quality were explored. Results: We found lower mean diet quality among people with intellectual disabilities (M = 80.9) compared to controls (M = 111.2; mean adjusted difference −28.4; 95% CI [−32.3, −24.5]; p <.001). Participants with borderline intellectual functioning and mild intellectual disabilities had lower diet quality and higher body mass index than individuals with severe to profound intellectual disabilities. Being female was a predictor of better diet quality. Conclusions: Overall, we found that diet quality was low in the sample of people with intellectual disabilities or borderline intellectual functioning.

Objective: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. Methods: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets. Results: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system. Conclusion: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. Practice implications: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities.

Background: There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs. Method: This study was part of the longitudinal ‘Healthy Ageing and Intellectual Disability’ study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival. Results: Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001). Conclusion: The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.

La emisión de programas de radio en directo, la producción de podcasts, cortometrajes y blogs son procesos de comunicación inclusiva que utilizan tecnologías híbridas y que promueven la participación de personas con discapacidad intelectual en la vida de su comunidad. La experiencia llevada a cabo por el Centro Ocupacional Pintor Rosales de Madrid ha resultado una iniciativa innovadora de participación al combinar con éxito las nuevas tecnologías con los medios de comunicación tradicionales. El presente artículo estudia la evolución llevada a cabo desde las primeras experiencias en 2016, a través de la emisión en directo del programa de radio «Échale Papas», en Radio Almenara —hoy ya en su sexta temporada y que puede escucharse también mediante podcast, en el blog del programa—, hasta el reciente estreno del cortometraje «Tras la puerta», en junio de 2021, presentado al XX Certamen de Expresión Dramática para centros de personas con discapacidad del Ayuntamiento de Madrid. Ese año, debido a las limitaciones sanitarias de la pandemia Covid-19, se convocó en formato audiovisual., Broadcasting live radio programs, podcast production, short films, and blogs are inclusive communication processes that use hybrid technologies and promote the participation of people with intellectual disabilities in the life of their community. The experience carried out by Pintor Rosales Occupational Center in Madrid is an innovative participation initiative that successfully combines new technologies with traditional media. This article studies the evolution carried out since the first experiences in 2016, through the live broadcast of the radio program «Échale Papas», on Radio Almenara —now in its sixth season and which can also be heard via podcast in the blog of the program, until the recent premiere of the short film «Tras la Puerta» in June 2021, presented at the XX Dramatic Expression Contest for centers for people with disabilities of Madrid City Council. That year, due to the health limitations of the Covid-19 pandemic, was convened in audiovisual format., Depto. de Ciencias de la Comunicación Aplicada, Fac. de Ciencias de la Información, TRUE, pub

The COVID-19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in people's lives. This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two-step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID-19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID-19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID-19 was exacerbated by sociopolitical, structural, individual and support-related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well-being and autonomy, COVID-19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be

27 januari 2022, Item does not contain fulltext, The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have 'a real connection' with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections.

Uvod: Istraživanja sugeriraju da postoji veza između socijalno poželjnih odgovora i stavova prema osobama s ometenošću. Ciljevi: Osnovni cilj istraživanja je ispitati povezanost između ispoljene sklonosti studenata edukacije i rehabilitacije da daju socijalno poželjne odgovore, ispoljene nelagodnosti i straha u interakcijama i učestalosti kontakta sa osobama s intelektualnom ometenošću. Posebni ciljevi istraživanja su ispitati da li postoje razlike u ispoljavanju socijalno poželjnih odgovora, nelagodnosti i straha i učestalosti kontakta u odnosu na godinu studija i studijski program, ispitati povezanost nelagodnosti i straha i učestalosti kontakta uz kontrolisanje socijalno poželjnih odgovora, te utvrditi koje varijable utiču na ispoljavanje nelagodnosti i straha. Metode: Istraživanje je sprovedeno na prigodnom uzorku od 100 studenata edukacije i rehabilitacije. Prvu i drugu godinu pohađa 71.0% studenata, dok treću i četvrtu godinu pohađa 29.0%. Specijalnu edukaciju i rehabilitaciju pohađa 58.0% studenata, Logopediju i audiologiju 27.0% i Poremećaje u ponašanju 15.0%. Rezultati: Postoji slaba negativna povezanost nelagodnosti i straha sa sklonošću ka socijalno poželjnim odgovorima, učestalošću kontakta i godinom studija. Korelacija između nelagodnosti i straha i učestalosti kontakta statistički je značajna i onda kada se kontroliše socijalno poželjno odgovaranje. Razlike ne postoje u odnosu na studijski program. U odnosu na godinu studija razlike postoje u ispoljavanju nelagodnosti i straha, gde studenti prve i druge godine postižu najviši skor. Najveći uticaj na ispoljeni nivo nelagodnosti i straha imaju sklonost ka davanju socijalno poželjnih odgovora i godina studija. Zaključak: U budućim istraživanjima stavova prema osobama sa ometenošću treba uzeti u obzir sklonost ka socijalno poželjenim odgovorima i nastojati ga kontrolisati., Introduction. Research suggests a link between socially desirable responses (SDR) and attitudes towards people with disabilities. Objectives. The main aim was to examine the relationship between the expressed tendency of education and rehabilitation students to give socially desirable responses, the expressed discomfort and fear in interactions, and the frequency of contact with people with intellectual disabilities. The specific objectives of the research were: to examine whether there was a difference in the manifestation of socially desirable responses, discomfort and fear, and the frequency of contact with regard to the year of study and the study program; to examine the relationship between discomfort and fear and the frequency of contact while controlling socially desirable responses; to determine which variables affected the expression of discomfort and fear. Methods. The survey was conducted on a convenient sample of 100 students of education and rehabilitation. Seventy-one percent of students attended the first and second year, while 29.0% attended the third and fourth year. Fifty-eight percent of students attended Special Education and Rehabilitation, 27.0% attended Speech and Language Pathology and Audiology, and 15% attended Behavioral Disorders. The Scale for Social Desirability, the Interaction with Disabled Persons Scale, and the Contact with Disabled Persons Scale were applied. Results. The results showed a weak negative correlation between discomfort and fear and the propensity to SDR, frequency of contact, and the year of study. The correlations between discomfort and fear and the frequency of contact were statistically significant even when socially desirable responses were controlled. There were no differences with regard to the study program. The difference regarding the year of study existed in the manifestation of discomfort and fear, where first and second-year students achieved the highest score. The tendency to give socially desirable respo

Item does not contain fulltext, BACKGROUND: Out-of-hours primary care for people with intellectual disabilities (ID) involves different groups of health care professionals, who are often not familiar to one another nor to the specific health care needs of this vulnerable population. It is not known to what extend these specific health care needs or organizational factors influence the delivery of out-of-hours primary care for people with ID. OBJECTIVE: The objective of this study is to explore the experiences of health care professionals regarding the medical content and the organizational context of out-of-hours primary care for people with ID. METHODS: Semi-structured interviews were conducted with daily care professionals, triage nurses and general practitioners (GPs) involved in out-of-hours primary care for people with ID in the Netherlands. Interviews were thematically analysed for medical content and organizational context. RESULTS: The analysis resulted in four interconnected themes: (i) uncertainties in the triage assessment of ID patients; (ii) confusion about inter-professional responsibilities; (iii) impact on routines and workflow concerning ID patients and (iv) constraints in the decision-making process. All issues raised were related to the organizational context. CONCLUSIONS: Health care professionals involved in out-of-hours primary care for people with ID indicate that the quality of this care is more influenced by the organizational context than by the medical content. We recommend out-of-hours GP services and care provider services for people with ID to set standards for roles and responsibilities in order to facilitate health care professionals in delivering accessible and high-quality care to this vulnerable population.

The COVID-19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in peoples lives. This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two-step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID-19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID-19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID-19 was exacerbated by sociopolitical, structural, individual and support-related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well-being and autonomy, COVID-19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be

Background The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome. Aim To determine the MCID on the Aberrant Behaviour Checklist–Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities. Method and procedures We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour. Outcomes and results We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6). Conclusions and implications The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

INTRODUCTION. In this investigation, the psychometric properties of the Goratu Questionnaire entitled "Perceptions of people with intellectual disabilities" will be analysed. The investigation was carried out on a non probabilistic sample of 414 students from Compulsory Secondary Education as well as High School, from 5 private/concerted educational centres. METHOD. The questionnaires were carried out during the period 2017-2019 at 15 classrooms. For the elaboration of the questionnaire, an exhaustive bibliographic review was carried out and several areas of inquiry were identified from personal narratives of 8 adults with ID. Its reliability is obtained through the Cronbach a coefficient and its validity through an exploratory factor analysis applying the principal components method for factor extraction and a subsequent factor analysis to determine the optimal number of those factors. RESULTS. The Goratu Questionnaire is comprised of 5 dimensions with a total of 15 items, which explain 52.193% of the total variance and displays an adequate reliability index (a=.719). DISCUSSION. The psychometric results have been adequate obtaining values ​​higher or equal to the recommendations that the tools designed for the evaluation of social realities must satisfy. Therefore, the questionnaire can be considered useful to know the perception of students toward people with ID. The study raises some limitations such as the size and characteristics of the sample, as well as the pertinence of a possible confirmatory analysis., INTRODUCCIÓN. En esta investigación se analizan las propiedades psicométricas del Cuestionario Goratu “Percepciones sobre las personas con discapacidad intelectual” en una muestra no probabilística de 414 estudiantes de Educación Secundaria Obligatoria y Bachillerato, procedentes de 5 centros educativos privados concertados. MÉTODO. Los cuestionarios fueron aplicados durante el periodo 2017-2019 en 15 aulas. Para la elaboración del cuestionario, se realizó una exhaustiva revisión bibliográfica y se identificaron áreas de indagación a partir de narraciones vitales de 8 personas adultas con DI. Se halla su fiabilidad a través del coeficiente a de Cronbach y su validez mediante un análisis factorial exploratorio aplicando el método de componentes principales para la extracción de factores y un posterior análisis factorial para determinar el número óptimo de dichos factores. RESULTADOS. El Cuestionario Goratu consta de 5 dimensiones con un total de 15 ítems, que explican el 52.92% de la varianza y cuenta con un índice de fiabilidad aceptable (a=.719). DISCUSIÓN. Los resultados psicométricos han sido adecuados al obtenerse valores superiores o iguales a las recomendaciones que deben satisfacer los instrumentos diseñados para la evaluación de realidades sociales. Por ello puede considerarse un instrumento útil para conocer la percepción del alumnado en relación con las personas con DI. El estudio plantea algunas limitaciones como el tamaño y características de la muestra, así como la pertinencia de un posible análisis confirmatorio.

The COVID-19 pandemic has meant a rapid transfer of everyday activities to the online world. Information and communication technologies (ICTs) have become more embedded than ever in people's lives. This investigation addresses how this change has affected the lives of people with intellectual disabilities (ID). A two-step design was used. A rapid review was conducted on empirical studies published between January 2019 and June 2021. Search terms related to ID, ICT use and COVID-19. A qualitative international bricolage was also conducted corresponding to author nationalities. Data gathered from the review and bricolage were analysed separately using thematic analysis and relationally synthesised. Digital solutions to provide access to COVID-19 information and guidance seemed inadequate but were seldom empirically studied. Digital poverty, literacy and exclusion remain significant issues for people with ID internationally. People and their carers experienced reduced and removed service provision, loneliness and impoverished daily lives during the pandemic; amelioration of which was facilitated by digital solutions. One solution often used was videoconferencing. Prior experience of digital participation, adequate finances, connection, support and digital literacy mentoring for both people with ID and those providing services and support facilitated digital inclusion. Digital exclusion during COVID-19 was exacerbated by sociopolitical, structural, individual and support-related barriers. Although awareness of digital exclusion appears to have been raised, the extent to which this has led to action and change remains unclear. Despite digital exclusion and digital participation benefitting continuation of life, social and emotional well-being and autonomy, COVID-19 has not provided the impetus to eradicate digital poverty for people with ID. Governmental support, digital education, creativity and problem solving are required to enable people with ID the human right to be

ResumenEstudio de enfoque cuantitativo, tipo no experimental y diseño transversal descriptivo-correlacional para determinar las relaciones existentes entre las necesidades de apoyo y calidad de vida familiar de personas con discapacidad intelectual. Los resultados del estudio encontraron una relación lineal y estadísticamente significativa alta y directamente proporcional entre las necesidades de apoyo y la calidad de vida familiar. Las insatisfacciones referidas por las familias deben ser consideradas para elaborar políticas sociales y planes de intervención de manera colaborativa con las familias.Palabras clave: necesidades de apoyo; calidad de vida; familia; discapacidad intelectual AbstractStudy of quantitative approach, non-experimental type and cross-sectional descriptive-correlational design to determine the relationships between the support needs and quality of family life of people with intellectual disabilities. The results of the study found a linear and statistically significant high and directly proportional relationship between support needs and family quality of life. The dissatisfactions reported by the families should be considered to develop social policies and intervention plans in collaboration with the families.Key words: support needs; quality of life; family; intellectual disability

BACKGROUND: The reported prevalence of insomnia symptoms in people with intellectual disabilities varies greatly, possibly due to the lack of a common definition. This article provides an overview of the different definitions used and formulates key points for a general definition.METHODS: A literature search was performed. An overview of the definitions used was given and compared to the third edition of the international classification of sleep disorders.RESULTS: The search yielded 16 studies. No uniform definition was used. Terminology and cut-off points of insomnia symptoms differed. Insomnia symptoms were mostly described as night-time problems. A minority of studies incorporated daytime consequences.CONCLUSION: An insomnia disorder entails more than merely night-time complaints and should include daytime consequences. A general definition is warranted. This definition should focus on night-time and daytime insomnia symptoms, incorporate subjective features, and discuss the use of objective measurements and influence of environmental circumstances.

Background: The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Methods: Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Results: Implementation interventions were widely used in which clients’ perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT’s social mechanisms’ Coherence, Cognitive Participation and Collective Action. Conclusions: The emphasis on consensus and clients’ perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care.

Background: The life expectancy of people with intellectual disabilities has increased. The implications of ageing have resulted in changes in their support needs and challenges to support staff. Access to evidence based strategies for support staff providing care to elderly with intellectual disabilities remains scarce. A systematic review was conducted to provide an overview of available psychosocial interventions. Methods: Four databases were searched and assessed according to the PRISMA guidelines. A narrative, integrative method of analysis was conducted to synthesise quantitative and qualitative data. Results: The 36 studies included in the review reported on interventions aimed at either identifying and meeting the needs or perceptions of older individuals or at improving their behaviour and skills. Furthermore, the role of support staff in the implementation of interventions was either active, assisting or undefined. Conclusions: This overview of studies could contribute to the existing body of knowledge and help to optimise psychosocial support for a growing population.

"Choosing where to live and with whom" is a right and for people with disabilities, is established by the UN Convention on the Rights of Persons with Disabilities (2006), the Charter of Fundamental Rights of the European (2009) and, in Italy, by Law 112/2016. However, the issue of self-determined living is complex. For people with disabilities in particular, it involves the micro level of individual stories, the meso level of family stories, professional actions and community relations, and the macro level of the culture of social inclusion within society. The exercise of this right, therefore, does not only concern the educational and social planning of paths to independent living, but also requires critical thinking about some of the concepts involved in this right. What does it mean to live? What makes a context a home? How can autonomy and dependence co-exist with a disability condition? How does all this shape relationships? Questioning personal, family and social stories, reflecting on practices and their implicit premises, composing new meanings around words, are ways to illuminate the dynamics of power in relationships, including those of education and care, and to set actions and reflections in motion in a creative and co-evolutionary dance. Stories can change power relations, modify the relationship with knowledge (Fabbri, Munari, 2005) and contribute to the creation of new landscapes and new relational choreographies. Formenti (2017) writes: "Storytelling, before being a research method, is the most common way to make sense of our lives, (...) it involves mind and body, connects us to the world and to others, stimulates reflection. (...) Research begins when stories open up to multiple interpretations and levels of interpretation. Training begins when we decide to make something of it". (pp.8-9). This contribution describes a cooperative inquiry (Heron, 1996) with social workers, volunteers and family members of people with intellectual disabilities invol

Background During the initial phase of the COVID-19 pandemic, many people with disabilities living in care facilities could not receive visitors. The use of virtual social contact has been recommended by health authorities. This systematic review examined the scientific evidence of the use and feasibility of information and communication technology (ICT) for social contact by people with intellectual disabilities living in care facilities, and potential effects on well-being. Methods Five databases were searched using traditional systematic screening and machine-learning supported screening. Findings are presented in a narrative synthesis using thematic analysis. Results Nine studies were included. We described three themes: means of ICT used for social contact; effects on well-being; and benefits, barriers, and preconditions. Conclusions Engaging in virtual social contact may be feasible for people with severe to mild intellectual disabilities, but there is little concrete evidence that this can be used as an alternative for in-person contact.

People with intellectual disabilities die at much younger ages than the general population, with this gap in life expectancy greater for females than males. This study aimed to seek the views of international experts concerning evidence relating to gender and the premature deaths of people with intellectual disabilities, their views on priorities for future research, and recommendations for future research and policy. Twenty international experts on the health and/or mortality of people with intellectual disabilities were invited to complete an online questionnaire. The questionnaire was based on summary statements from a literature review on gender and premature death among people with intellectual disabilities compared to the general population. Summary statements included general topics such as mortality and specific major causes of death (e.g., cancer). For each summary statement, respondents rated on 5-point scales: their agreement with the statement; the importance of the topic; and the adequacy of the evidence. Participants then indicated their top three priorities for future research, and gave recommendations for future research and policy. Eighteen (90% response rate) respondents from nine countries participated. There was consensus among respondents regarding the greater inequality in intellectual disability vs. general population mortality rates for women compared to men. Evidence was considered inadequate for most topics. Evidence on cause-specific death rates was the most frequently mentioned main research priority, followed by age trends in mortality compared to the general population. Recommendations ranged from the need to use consistent methodology and case definition in future research, to the need for governments to be called to account on the issue. Further evidence on gender and mortality is urgently needed; an international consensus on recommendations for future research pertaining to gender and the premature deaths of people with intellectual

Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India. Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability. Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factors related to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system. Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

People with intellectual disabilities die at much younger ages than the general population, with this gap in life expectancy greater for females than males. This study aimed to seek the views of international experts concerning evidence relating to gender and the premature deaths of people with intellectual disabilities, their views on priorities for future research, and recommendations for future research and policy. Twenty international experts on the health and/or mortality of people with intellectual disabilities were invited to complete an online questionnaire. The questionnaire was based on summary statements from a literature review on gender and premature death among people with intellectual disabilities compared to the general population. Summary statements included general topics such as mortality and specific major causes of death (e.g., cancer). For each summary statement, respondents rated on 5-point scales: their agreement with the statement; the importance of the topic; and the adequacy of the evidence. Participants then indicated their top three priorities for future research, and gave recommendations for future research and policy. Eighteen (90% response rate) respondents from nine countries participated. There was consensus among respondents regarding the greater inequality in intellectual disability vs. general population mortality rates for women compared to men. Evidence was considered inadequate for most topics. Evidence on cause-specific death rates was the most frequently mentioned main research priority, followed by age trends in mortality compared to the general population. Recommendations ranged from the need to use consistent methodology and case definition in future research, to the need for governments to be called to account on the issue. Further evidence on gender and mortality is urgently needed; an international consensus on recommendations for future research pertaining to gender and the premature deaths of people with intellectual

Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. Methods: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. Results: In Round 1, components were rated as (very) relevant by 70–98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67–97% (M = 90%) and feasibility ratings 66–86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. Conclusion: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.

The article considers the problem of social rehabilitation of people with intellectual disabilities: analyzes the category of «disability» as a social phenomenon, summarizes the current approaches and social practices of foreign and Russian scientific schools in the context of the problem being studied, theoretically reveals the potential of art–therapeutic methods in organizing social rehabilitation of people with disabilities in accordance with the specifics of disabilities.The article describes an empirical study, in the course of which the features of social orientation of people with intellectual disabilities, their adaptive mechanisms and creative potential are revealed. The material of the article includes a description of the author's project “Art without Borders”, aimed at the socio–cultural rehabilitation of people with intellectual disabilities and the development of their creative potential using art therapy methods. The results of the study can be the basis for designing a system of social rehabilitation of people with intellectual disabilities.

Progressive resistance exercise training (PRET) reduces cardiovascular risk factors (CVRF) in the general population. It is unknown if PRET also reduces these risk factors in adults with intellectual disabilities (ID). The aim is to present the protocol of an intervention study that investigates the effect of PRET on CVRF in adults with ID. We will use a repeated time series design with one study group. Adults with mild-to-moderate ID and at least two CVRF are eligible (Netherlands Trial Register, NL8382). During a 12-week baseline period, measurements take place at a 6-week interval. After this, the PRET programme starts for 24 weeks, after which all measurements will be repeated. We will use hierarchical regression models, adjusted for sport activity and medication use, to estimate the effect of PRET. After the intervention, the participants will be followed-up for 12 weeks. We will evaluate factors for successful implementation of exercise in daily life. Primary outcomes are: hypertension, obesity, hypercholesterolemia, diabetes, metabolic syndrome. Secondary outcomes are: physical fitness, sarcopenia, physical activity, activities of daily living, falls, challenging behaviour. If our results show that the PRET programme is effective, it may be a promising non-pharmacological intervention to reduce CVRF in adults with ID.

Introduction: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods: Through a participatory research approach, EBCD was adjusted to long-term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results: The participatory research resulted in the development of ‘Ask us!’—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the ‘

Despite many initiatives to reframe and support inclusion for people with disabilities, people with intellectual disabilities continue to experience social exclusion in their local communities. This study shares the perspectives of people with an intellectual disability on what matters to them in their local communities. This study aims to inform local governments of the value of engaging with and listening to local people with intellectual disabilities and is an important exploration of how the social sustainability of cities is framed and valued by people who have historically been socially and geographically excluded. Focus groups and interviews were conducted in six local government areas, with a mix of metropolitan and regional areas, in two states of Australia—NSW and Victoria. The study analysed how 45 Australian adults with intellectual disabilities described their local communities and conceptualised better inclusion. The results were collated and organised by applying an adapted framework of inclusive cities. The participants expressed the need for safe, accessible and clean public amenities; accessible information; appropriate communication; and for people to be more respectful, friendly and understanding of the needs of people with intellectual disabilities. This study suggests that local governments can take action in order to improve social sustainability by engaging with local people with intellectual disabilities as citizens, advisors and employees, and by educating the wider community about respect and social inclusion for all.

Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. Methods: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare profes

26 oktober 2021, Item does not contain fulltext, Background: We sought to assess diet quality among people with intellectual disabilities or borderline intellectual functioning, living in residential facilities or receiving day care. Methods: We measured diet quality using the Dutch Healthy Diet Food Frequency Questionnaire (DHD) and compared this between participants with (n = 151) and controls without intellectual disabilities (n = 169). Potential correlates of diet quality were explored. Results: We found lower mean diet quality among people with intellectual disabilities (M = 80.9) compared to controls (M = 111.2; mean adjusted difference -28.4; 95% CI [-32.3, -24.5]; p < .001). Participants with borderline intellectual functioning and mild intellectual disabilities had lower diet quality and higher body mass index than individuals with severe to profound intellectual disabilities. Being female was a predictor of better diet quality. Conclusions: Overall, we found that diet quality was low in the sample of people with intellectual disabilities or borderline intellectual functioning.

Contains fulltext : 227106.pdf (publisher's version ) (Open Access), Background: Interactions with professional caregivers affect the quality of support and life of people with intellectual disabilities and contribute to the occurrence of challenging behaviour. The present literature review provides an overview of factors facilitating or hindering meaningful staff-client interactions in people with borderline to profound intellectual disabilities and challenging behaviour. Method: Database searches, reference list and citation screening, and expert consultations were undertaken. A thematic synthesis of 28 studies was performed. Results: Factors were identified at the client (i.e. behaviour, emotions and (dis)abilities), staff (i.e. interactive principles, knowledge, psychological resources, attributions, attitudes and (coping with) emotions) and context levels (i.e. group size, team and organization). Conclusions: The present overview provides insights into factors that facilitate or hinder meaningful staff-client interactions with people with intellectual disabilities and challenging behaviour. The results support the need to combine client, staff and contextual factors when considering staff-client interactions in research and practice.

Context: UK austerity measures following the 2008 financial crisis included budget reductions for health and social care. We aimed to investigate the extent to which austerity-measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes. Objectives: We report on what services people with intellectual disabilities were using, whether they had lost care, the costs of their support, and what impact any loss of benefits and services had on individuals’ lives. Methods: 150 participants with intellectual disabilities across England were interviewed about their services and their well-being. Service and individual support costs were calculated. Statistical and thematic analyses were employed. Results: The largest proportion (42%) of our sample had lost care. 14% had experienced changed care, and care had remained the same for 36%. Only 7% said their care had improved. No associations were found between costs and characteristics and needs except for whether the person had mild or severe intellectual disabilities. Those who had lost care engaged in fewer activities and had significantly lower self-esteem and quality-of-life scores compared with those who had not lost care. Loss of care impacted on individuals’ independence and future aspirations. Limitations: A comparative study of austerity impacts across the whole of England was not possible. Our costs data may be underestimated because full information on support from home, key, or support workers was unavailable. Implications: In attempting to mitigate against COVID-19 impacts on people with intellectual disabilities, policy-decisions will need to consider the backlog of a decade of cuts.

Empirical studies on health care utilization by people with disabilities are rare in South Korea. There exist even fewer studies that examine health care utilization by people with intellectual disabilities and that compare the health care utilization pattern by this population vs by population with other types of disabilities. This study investigates the characteristics of people with intellectual disabilities (vs those with non-intellectual disabilities) and evaluates the relationship between the presence/absence of intellectual disabilities and health care utilization. The present study analyzed the 2005 and 2016 Korea Welfare Panel Study data. The final sample included observations from these two years that span over the ten-year period. Health care utilization was operationalized by whether the people with disabilities (intellectual and non-intellectual) participated in health screening, how often they received outpatient physician visits, and how long they received inpatients service. To examine the effect of the types of disabilities on health care utilization, random-effects logistic regression and negative binomial regression models were employed. The present study found that people with intellectual disability showed a much lower attendance rate than both people with non-intellectual disabilities and people without disabilities. The percentage of those who received outpatient service experience was higher for people with non-intellectual disabilities than for people with intellectual disabilities. The mean annual number of outpatient visits was greater for people with non-intellectual disabilities than for people with intellectual disabilities. People with intellectual disabilities also showed a lower rate of inpatient experience compared to those with non-intellectual disabilities. Based on these results, it is suggested that policy-makers should promote fuller access to the use of health care services for people with intellectual disability. In addition