Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities.

AIM: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. METHOD: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. RESULTS: Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability-related services. Families of people with extensive support needs have generally experienced greater difficulties. CONCLUSION: Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability.

Psychotropic drugs intake in people aging with intellectual disability: Prevalence and predictors.

BACKGROUND: Psychotropic medication is frequently administered to people with intellectual disability with mental health and/or behavioural problems, instead of other non-pharmacological interventions. This study describes the mental health and behavioural problems of people aging with intellectual disability, their psychotropic medication intake, and the factors contributing to a greater medication intake. METHOD: The sample consisted of 991 people with intellectual disability over 45 years. Descriptive statistics and multinominal logistic regression were carried out. RESULTS: Antipsychotics were the most used psychotropic drug. Older people with mild intellectual disability living in institutions and affected by mental health and behavioural problems were more likely to take larger amounts of psychotropic medication. CONCLUSIONS: Antipsychotics continue to be widely used by people with intellectual disability and mental and behavioural health problems, especially those in institutionalised settings. Future research should consider if medication intake could be reduced providing better supports in the community and non-pharmacological interventions.

Adaptation and validation of the self-report version of the scale for measuring quality of life in people with acquired brain injury (CAVIDACE).

PURPOSE: The disability and resulting dependence after acquired brain injury (ABI) significantly reduces quality of life (QoL), making the correct assessment of QoL important. However, the instruments currently used to assess QoL are either reductionist, including only health-related aspects, or, like the CAVIDACE scale, are based on multidimensional models but ignore the individual's perspective. Therefore, the purpose of this study is to validate the self-report version of the CAVIDACE scale. METHOD: The sample consisted of 345 adults with ABI aged between 18 and 91 years (M = 54.83; SD = 14.91). The participants' QoL was evaluated by professionals and family members and by the participants themselves, using the original version of the CAVIDACE scale and an adapted self-report version. The following complementary variables were also measured: social support, depression, community integration, and resilience. RESULTS: The results supported the internal structure of the scale based on the theoretical model. According to this model, QoL is composed of eight first-order intercorrelated domains (RMSEA = 0.050, CFI = 0.891, TLI = 0.881). The internal consistency, determined by omega rank, was adequate in seven of the eight domains, ranging between 0.66 (PW) and 0.87 (SI). The convergent and discriminant validity of the scale was very good overall. CONCLUSIONS: The self-report version of the CAVIDACE was demonstrated to be a specific instrument with very good psychometric properties and is a very useful complement in the assessment of QoL in people with ABI.

[Early neonatal sepsis, incidence and associated risk factors in a public hospital in western Mexico]. / Sepsis neonatal temprana, incidencia y factores de riesgo asociados en un hospital público del occidente de México.

BACKGROUND: Early neonatal sepsis (EOS) is the second leading cause of death in the first week of life. Epidemiology differs in developed and developing countries. AIM: To describe the epidemiology of EOS among newborn patients in a public hospital in western Mexico. METHODS: A prospective cohort study was performed in newborns of Nuevo Hospital Civil de Guadalajara "Dr. Juan I Menchaca". EOS was diagnosed with blood cultures or cultures of cerebrospinal fluid within the first 72 h of life. We analyzed risk factors (RF) by multivariate analysis with logistic regression. RESULTS: We identified an EOS incidence of 4.7 events per 1,000 live births. Seventy two percent of the isolated bacteria were gram negative bacilli. Factors associated with EOS were maternal age≤15 years (OR 3.50; 95% CI 1.56-7.85), rupture of membranes>18 h (OR 2.65; 95% CI 1.18-5.92), maternal fever (OR 6.04; 95% CI 1.54-23.6), birth weight≤2,500 g (OR 4.82; 95% CI 2.38-9.75) and gestational age<37 weeks (OR 3.14; 95% CI 1.58-6.22). CONCLUSIONS: In addition to the RF known for EOS an independent association was observed with maternal age≤15 years.

From a concept to a theory: The six eras of quality of life research and application.

This article describes the evolution of the quality of life concept through the lens of six distinct eras. Each era reflects a shared process in which multiple stakeholders, including persons with intellectual and developmental disabilities and researchers, have played a significant role. Across these six eras, research on quality of life has evolved from operationalizing a concept to developing a theory. As described in the article, the first three eras resulted in formulating conceptualization, measurement, and application principles; developing quality of life conceptual and operational models; and constructing reliable and valid instruments to assess quality of life domains or domain-referenced indicators. The application era has focused on applying the concept of quality of life and its measurement, supports provision, conceptualization and theory, and systemic change. The final two eras have involved theory development and theory confirmation.

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

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

A Pioneer Tool to Reduce Restrictive Practices toward People with Intellectual and Developmental Disabilities.

Reducing restrictive practices toward individuals with intellectual and developmental disabilities is a globally recognized imperative and human rights priority. This paper presents a novel tool called LibRe for assessing and reducing restrictive practices. This tool involved an instrumental multistage design and collaboration between professionals, individuals with disabilities, family members, and experts from different fields. It addresses diverse restrictive practices in five key domains: physical or mechanical, chemical or pharmacological, structural, relational, and practices related to contexts and supports. It addresses practices that are pertinent to the Spanish context and that existing tools have not covered. Embedded as a step within an organizational approach, LibRe fosters organizational transformation and provides resources to achieve outcomes within reduction plans for restrictive practices. In total, 156 teams comprising 585 professionals, 64 people with disabilities, and 44 family members responded to the tool. In terms of evidence for internal structure validity, the oblique five-factor model exhibited an adequate fit through confirmatory factor analysis, along with satisfactory reliability indices, according to ordinal alpha and omega. Users positively appraised the tool's usefulness and identified its strengths and challenges. Although further research is needed, preliminary evidence frames LibRe as a useful resource for practice and research.

How to Assess Oral Narrative Skills of Children and Adolescents with Intellectual Disabilities: A Systematic Review.

Children and adolescents with intellectual disabilities (ID) often encounter difficulties with narrative skills. Yet, there is a lack of research focusing on how to assess these skills in this population. This study offers an overview of the tools used for assessing oral narrative skills in children and adolescents with ID, addressing key questions about common assessment tools, their characteristics, and reported evidence. A systematic review was conducted of the literature published between 2010 and 2023 in the PsycINFO, ERIC, Education, and Psychology databases. An initial 1176 studies were reviewed by abstract, of which 485 were read in full text, leading to the selection and analysis of 22 studies. Most of the identified tools involve analyzing language samples obtained using wordless picture story books. Three common tools are emphasized. Studies have primarily identified inter-rater reliability and test-criterion evidence for validity. The main tools and their characteristics are discussed in depth to aid readers in discerning suitable options for research or practical applications. The importance of reporting diverse sources of evidence for validity and reliability within this population is highlighted.

The Quality of Life Supports Model as a Vehicle for Implementing Rights.

The Quality of Life Supports Model (QOLSM) is emerging as a new framework that is applicable to people with disabilities in general, but specially to people with intellectual and developmental disabilities (IDD). The aim of this conceptual paper is twofold. Firstly, it aims to show the overlap between the QOLSM and the Convention on the Rights of People with Disabilities (CRPD), highlighting how the former can be used to address many of the goals and rights embedded in the latter. Secondly, the article seeks to illustrate the connection between these two frameworks and highlight the importance of acknowledging and measuring the rights of people with IDD. Therefore, we posit that the new #Rights4MeToo scale is ideal for: (a) providing accessible means and opportunities for people with IDD to identify and communicate their needs regarding their rights; (b) enhancing the supports and services that families and professionals provide to them; and (c) guiding organizations and policies to identify strengths and needs in relation to rights and quality of life. We also discuss future research needs and summarize the main findings of this article, highlighting its implications for practice and research.

A Systematic Approach to Implementing, Evaluating, and Sustaining the Shared Citizenship Paradigm in the Disability Field.

The disability field continues to face challenges in transforming and implementing meaningful and effective changes in person-centered services and supports aligned with the principles of the Convention on the Rights of Persons with Disabilities. To guide this transformative process effectively, a paradigm must be operationalized through a systematic approach. This article outlines such a systematic approach, consisting of two components: (a) aligning the paradigm's foundational pillars to the elements of an explanatory/implementation model (the Quality of Life and Supports Model) to facilitate the paradigm's operationalization, acceptance, and application and (b) aligning implementation, evaluation, and sustainability strategies with ecological systems, implementation targets, and the paradigm's foundational pillars to drive change across systems. The synergy and alignment between these components underscore the importance of linking public policies with professional and organizational practices to promote social inclusion and enhance the quality of life for people with disabilities. We provide practical examples highlighting the collaborative potential of this synergy and emphasize the significance of evidence-based and person-centered practices in promoting equal rights and social inclusion for people with disabilities.

A measurement of self-determination for people with intellectual disability: description of the AUTODDIS scale and evidences of reliability and external validity.

Background: Appropriate supports and instructional practices contribute to the development of self-determination. Also, research shows that the promotion of skills related to self-determination has been linked to the achievement of desired outcomes over the different life stages. Advances in self-determination require the development of assessment instruments because there is a reciprocal relationship between assessment and instruction. The purpose of this paper is to provide a description of the AUTODDIS Scale, along with evidence of its reliability and external validity. Method: A sample of 541 people with intellectual disabilities aged from 11 to 40 was used to validate the scale. Results: The reliability results indicate that the AUTODDIS Scale shows high internal consistency. The total score and subscale scores indicate moderate inter-rater reliability. The scores were also moderately to highly associated with other related measures of self-determination and quality of life (QoL). Conclusion: Our results demonstrate that consistent and valid information can be obtained from the AUTODDIS Scale.

A community living experience: Views of people with intellectual disability with extensive support needs, families, and professionals.

BACKGROUND: Despite the benefits of community living for people with intellectual disabilities (ID) and extensive support needs, they remain highly institutionalized. AIMS: To qualitatively analyze the perceptions of people with ID, including those with extensive support needs, professionals, and family members six months after the implementation of 11 community homes for 47 people in different regions of Spain METHODS: Thematic analysis of 77 individual interviews conducted with 13 people with ID, 30 professionals and 34 family members was performed using Nvivo12. RESULTS: Seven themes were found: (1) "the room as I like it", (2) "sometimes I don't obey", (3) "here I do a bit of everything", (4) "lots of people love me here", (5) "all thanks to them, who have helped me" (6) "I miss my mom", and (7) "I'm happy here". IMPLICATIONS: Transitioning into the community has shown a clear positive change in emotional well-being, opportunities to participate in activities or exercise control over one's life. Nevertheless, certain restrictions were still present in people's lives, which significantly limit their right to independent living. While many of these restrictions may disappear, professional practices typical of a medical model can be recreated in services located in the community.

Application of the Rasch rating scale model to the assessment of quality of life of persons with intellectual disability.

BACKGROUND: Most instruments that assess quality of life have been validated by means of the classical test theory (CTT). However, CTT limitations have resulted in the development of alternative models, such as the Rasch rating scale model (RSM). The main goal of this paper is testing and improving the psychometric properties of the INTEGRAL Quality of Life Scale (i.e., fit statistics, person and item reliability coefficients) with RSM. METHOD: The sample comprised 271 Spanish adults with intellectual disability. RESULTS: The results showed that the data fitted the model, point-biserial correlations were adequate, items showed precision, reliability of items (.98) and persons (.89) were adequate, and the response categories were suitable (thresholds were ordered). However, one item ("I feel excluded from society") did not fit the model and a few items were too easy for participants to achieve. CONCLUSIONS: Although it seems necessary to include more difficult items and to delete one, the INTEGRAL Scale is a useful instrument with evidence of validity.

Predictors of individual quality of life in young people with Down syndrome.

PURPOSE/OBJECTIVE: Although the concept of quality of life (QoL) has become a reference framework for the provision of support and services to people with intellectual disability (ID), its conceptualization and application for persons with Down syndrome (DS) have received little attention. This study analyzed QoL outcomes in children and young people with DS and examined the influence of several individual and environmental variables on QoL. RESEARCH METHOD/DESIGN: A cross-sectional study was conducted. Participants were 404 children and young people with DS aged 4 to 21 who were users of 73 organizations providing services to people with ID. The KidsLife-Down Scale was used to assess QoL-related personal outcomes perceived by professionals and relatives. Descriptive statistics were calculated. Correlation coefficients were computed and multiple regression analyses were conducted for each QoL domain and for the composite score. RESULTS: The highest scores were obtained in material well-being, physical well-being, and rights, whereas the lowest scores were observed in self-determination and social inclusion. Multiple regression analyses showed that age, level of ID, level of support needs, degree of dependency, type of schooling, and size of organization were predicting factors of scores in QoL domains. CONCLUSIONS: This study underlines priority areas and relevant variables that must be considered when planning, implementing, and assessing supports and services to improve the QoL of children and young people with DS. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

The predictors of proxy- and self-reported quality of life among individuals with acquired brain injury.

PURPOSE: Acquired brain injury (ABI) diminishes quality of life (QoL) of affected individuals and their families. Fortunately, new multidimensional instruments such as the calidad de vida en daño cerebral (CAVIDACE) scale are available. However, differences in self- and proxy-reported QoL remain unclear. Therefore, this study examined these differences and identified predictors of QoL among individuals with ABI. MATERIALS AND METHODS: This cross-sectional study comprised 393 adults with ABI (men: 60%; Mage= 54.65, SD = 14.51). Self-, family-, and professional-reported QoL were assessed using the CAVIDACE scale. Other personal and social variables were assessed as predictors of QoL. RESULTS: Professionals had the lowest QoL scores (M = 1.88, SD = 0.45), followed by family members (M = 2.02, SD = 0.44) and individuals with ABI (M = 2.10, SD = 0.43). Significant differences were found for almost all QoL domains, finding the highest correlations between family and professional proxy measures (r = 0.63). Hierarchical regression analysis revealed that sociodemographic, clinical, rehabilitation, personal, and social variables were significant predictors of QoL. CONCLUSIONS: It is necessary to use both self- and proxy-report measures of QoL. Additionally, the identification of the variables that impact QoL permits us to modify the interventions that are offered to these individuals accordingly.Implications for rehabilitationAcquired brain injury (ABI) causes significant levels of disability and affects several domains of functioning, which in turn can adversely affect quality of life (QoL).QoL is a multidimensional construct that is affected by numerous factors: sociodemographic, clinical, personal, social, etc; and also, with aspects related to the rehabilitation they receive after ABI.Rehabilitation programs should address the different domains of functioning that have been affected by ABI.Based on research findings about the QoL's predictors, modifications could be made in the rehabilitation process; paying special attention to the depressive- and anosognosia process, as well as the importance of promoting social support, community integration, and resilience.

A quality of life supports model: Six research-focused steps to evaluate the model and enhance research practices in the field of IDD.

In the field of intellectual and developmental disabilities (IDD) the constructs of quality of life and supports have been combined into a Quality of Life Supports Model (QOLSM) that is currently used internationally for supports provision, organization transformation, and systems change. With the model's increasing and widespan use in research and practice, there is a need to evaluate the model's impact at the individual, organization, and systems levels. The purpose of this article is to outline six specific research-focused evaluation steps that allow researchers to evaluate the model and thereby enhance research practices is the field of IDD. These steps involve: (1) operationalizing components of the QOLSM; (2) relating QOLSM components to the type of research planned and intended outcome indicators; (3) gathering evidence and establishing its credibility; (4) interpreting and communicating the results; (5) implementing research outcomes at the level of the microsystem, mesosystem and macrosystem; and (6) judging the impact of the model. These steps delineate a research framework that is based on a systematic approach to evidence-based practices and enhanced research practices in the field of IDD.

Empirically supported psychological treatments: The challenges of comorbid psychiatric and behavioral disorders in people with intellectual disability.

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability (ID) at all stages of their life. We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population, along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems. We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID. The review is structured around the three generations of therapies: Applied behavior analysis (e.g., positive behavior support), cognitive behavioral therapies (e.g., mindfulness-based cognitive therapy), and contextual therapies (e.g., dialectical behavior therapy). We conclude with some recommendations for professional practice in the fields of ID and psychiatry.

Operationalisation of quality of life for students with intellectual and developmental disabilities to improve their inclusion.

BACKGROUND: Quality of life (QoL) is regarded as a framework to enhance inclusive education outcomes in different domains for all students, especially for those with intellectual and developmental disabilities (IDD). Assessment tools are needed to implement this framework. Although there is a long trajectory of QoL assessment in people with IDD, we identify a lack of instruments for students with IDD who attend to general education contexts. AIMS: The goal of this study is to produce a pool of items in order to develop a field-test version of a QoL instrument for this target group. METHODS: 14 educational professionals participated in a four-round Delphi study, assessing the content of the items proposed according to four criteria (suitability, importance, observability and sensitivity). RESULTS: The results of this study provided evidence of content validity regarding the pool of items that will be included in a field-test version. CONCLUSIONS: The results obtained are important for the development of a QoL assessment tool to improve the inclusion of students with IDD in general education settings.

Community Living, Intellectual Disability and Extensive Support Needs: A Rights-Based Approach to Assessment and Intervention.

People with intellectual disability (ID) and extensive support needs experience poorer quality of life than their peers whose disability is not as severe. Many of them live in residential settings that limit community participation and prevent them from exercising control over their lives. This work analyzes the extent to which professional practices are aimed at promoting the right to community living for people with ID and extensive support needs, as well as the rights that are particularly linked to it, such as the right to habilitation and rehabilitation and the right to privacy. A specific questionnaire was designed and administered to 729 adults with intellectual disability (M = 37.05; DT = 12.79) living in different settings (family home, residential facilities and group homes). Measurement and structural models were estimated using exploratory structural equation modeling. Results obtained reveal that people with extensive support needs receive less support in terms of guaranteeing their right to independent living and privacy, especially when they live in disability-related services. This study highlights the need to implement and monitor, using valid and reliable indicators, mesosystem strategies that guarantee the right to live and participate in the community, especially for individuals with ID and extensive support needs.

Chronic Health Conditions in Aging Individuals with Intellectual Disabilities.

Life expectancy of people with intellectual disability (ID) has increased in recent decades. However, there is little evidence of whether these extra years of life are spent in good health. The aim of this study, conducted in Spain, is to obtain information about the prevalence of chronic health conditions in people with ID over the age of 44 and compare it with that of their peers without disability. Twenty health conditions were analyzed in 1040 people with ID and 12,172 people without ID through a study of their prevalence. The findings show that chronic constipation, urinary incontinence, thyroid disorders and obesity are the most prevalent chronic diseases among individuals with ID. In addition, this population group suffers these health conditions more frequently than older adults without ID. Detection and early intervention in these health conditions will improve adequate access to social health services and subsequent treatment of aging adults with ID.