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 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.

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.

Frecuencia de síndrome hepatopulmonar en pacientes pediátricos trasplantados en un hospital de alta complejidad en Medellín, Colombia / Frequency of hepato-pulmonary syndrome in pediatric transplanted patients in a high complexity hospital in Medellín, Colombia

Introducción. El síndrome hepatopulmonar (SHP) es una complicación grave en los pacientes con enfermedad hepática crónica y/o hipertensión portal. La frecuencia descrita en adultos es entre 4 % y 47 %. En pediatría, los reportes también son muy variables y van desde el 3 % hasta el 40 %, desconociendo la real incidencia de este. El objetivo de esta descripción es conocer la frecuencia del SHP en pacientes pediátricos en un hospital de alta complejidad, por medio de una búsqueda activa del SHP en los estudios pretrasplante hepático hallados en las historias clínicas. Metodolo-gía. Estudio retrospectivo de 5 años, en un hospital de alta complejidad en Colombia, en menores de 15 años con un primer trasplante hepático. Resultados. Se contó con la información de 24 pacientes, se analizaron variables demográficas y se confirmó el SHP en 18 pacientes (75 %), encontrando una gravedad leve o moderada en el 33 % y 44 %, respectivamente, siendo en este grupo la cirrosis con complicaciones por hipertensión portal la indicación más frecuente para el trasplante, y como etiología de base, la atresia de vías biliares en un 61 %. Conclusión. El SHP en nuestra población se encontró con una alta frecuencia de presentación, por encima de lo reportado en la literatura, llevando a recomendar una búsqueda activa, con el objetivo de brindar un manejo integral y oportuno.

Introduction. Hepatopulmonary syndrome (HPS) is a serious complication in patients with chronic liver disease and/or portal hypertension. The frequency described in adults is between 4% and 47%. In pediatrics, reports are also highly variable and range from 3% to 40%, with the real incidence not clear yet. The objective of this study is to know the frequency of HPS in our population through an active search for HPS in pre-liver transplant studies in clinical records. Methodology. This is a 5-year retrospective study, in a reference hospital in Colombia, that included children under 15 years of age with a first liver transplant. Results. In 24 patients, the information was available, demographic variables were analyzed, and HPS was confirmed in 18 patients (75%), finding mild and moderate severity in 33% and 44%, respectively. In this group, cirrhosis with complications due to portal hyper-tension was the most frequent indication for transplantation and biliary atresia was the main etiology in 61%. Conclusion. HPS in our population was found with a high frequency, higher than is described in the literature, leading to the recommendation of an active search, with the aim of providing com-prehensive and timely management.

¿Reconocemos adecuadamente la acolia/ hipocolia en los lactantes?

Objetivo: El objetivo de este estudio fue valorar el nivel de acierto del personal de salud en la identificación de hipocolia/acolia en un escenario simulado. Con respecto a esto afirmamos que la hipocolia/acolia son signos clínicos que indican obstrucción biliar, relacionándose con enfermedades colestásicas obstructivas, siendo la atresia de vías biliares una de las principales causas en los primeros meses de vida; en esta, el pronóstico del manejo quirúrgico depende del diagnóstico temprano. Métodos: Estudio descriptivo/ prospectivo basado en la realización de una prueba virtual al personal de salud de Medellín, dividiéndose según sitio de trabajo, edad, sexo y profesión. Fueron utilizadas cinco imágenes de la tabla de colores de materia fecal, utilizada en Taiwán, previa autorización de sus autores. Se consideró reconocimiento adecuado cuando el participante identificaba como anormales las tres imágenes que representaban la acolia/hipocolia. Resultados: Se obtuvo respuesta de 442 participantes (se excluyeron 53) y solo 253 (65 %) lograron reconocimiento adecuado. En el análisis por subgrupos se encontró que hubo un mayor acierto en los participantes del Hospital Pablo Tobón Uribe con respecto a otras instituciones (69 y 54.6 %, respectivamente - p. 0.005). Los participantes con menor porcentaje de acierto fueron los médicos generales en un (45 %). Conclusión: Durante la valoración simulada sobre la identificación adecuada de acolia/hipocolia se encontró que solo el 65 % de la población participante acertó en la identificación correcta de este signo clínico, lo que sugiere una mayor atención en cuanto al entrenamiento para la identificación de acolia/hipocolia.

Objetive: The objective of this study was to assess the level of success of healthcare worker in the identification of hypocholia / acholia in a simulated scenario. With respect to this, we affirm that hypocholia/acholia are clinical signs indicative of biliary obstruction, related to obstructive cholestatic diseases, being bile duct atresia one of the main causes in the first months of life. In this, the prognosis of surgical management depends on the early diagnosis. Methods: Descriptive and prospective study, based on the analysis of a virtual survey to Medellín's healthcare workers, subgroup analysis was done according to workplace, age, sex and profession. Five images were used from the Taiwan Stool Color Card, with the authorization from their authors. Adequate recognition was considered when the participant identified the three images representing acholia / hypocholia as abnormal. Results: a response was obtained from 442 participants (53 were excluded), and only 253 (65 %) achieved adequate recognition. In the analysis by subgroups, it was found that there was a greater success in the Pablo Tobón Uribe Hospital participants with respect to other institutions (69 % and 54.6 %, respectively - p. 0.005). The participants with the lowest percentage of correct answers were general practitioners (45%). Conclusion: During the simulated assessment on the adequate identification of acholia / hypocolia, it was found that only 65% of the participating population was correct in the right identification of this clinical sign, which suggests greater attention in training for the identification of acholia / hypocolia.

The mental health and well-being of adults with intellectual disability during the COVID-19 pandemic: A narrative review.

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID-related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID-19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self-report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic-based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

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.

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.

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.

[Empirically Supported Psychological Treatments for Children and Adolescents: State of the Art].

Empirically Supported Psychological Treatments for Children and Adolescents: State of the Art. BACKGROUND: The empirical evidence accumulated on the efficacy, effectiveness, and efficiency of psychotherapeutic treatments in children and adolescents calls for an update. The main goal of this paper objective was to carry out a selective review of empirically supported psychological treatments for a variety of common psychological disorders and problems in childhood and adolescence. METHOD: A review was carried out of the psychological treatments for different psychological disorders and problems in social-emotional or behavioral adjustment in the child-adolescent population according to the Spanish National Health System (Clinical Practice Guidelines) levels of evidence and degrees of recommendation. RESULTS: The findings suggest that psychological treatments have empirical support for addressing a wide range of psychological problems in these developmental stages. The degree of empirical support ranges from low to high depending on the phenomenon analyzed. The review suggests unequal progress in the different fields of intervention. CONCLUSIONS: From this update, psychologists will be able to make informed decisions when implementing those empirically supported treatments to address the problems that occur in childhood and adolescence.

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.

Validity of DSM-5 Oppositional Defiant Disorder Symptoms in Children with Intellectual Disability.

Oppositional defiant disorder (ODD) is one of the most frequently diagnosed disorders in children with intellectual disabilities (ID). However, the high variability of results in prevalence studies suggests problems that should be investigated further, such as the possible overlap between some ODD symptoms and challenging behaviors that are especially prevalent in children with ID. The study aimed to investigate whether there are differences in the functioning of ODD symptoms between children with (n = 189) and without (n = 474) intellectual disabilities. To do so, we analyzed the extent to which parental ratings on DSM-5 ODD symptoms were metrically invariant between groups using models based on item response theory. The results indicated that two symptoms were non-invariant, with degrees of bias ranging from moderately high ("annoys others on purpose") to moderately low ("argues with adults"). Caution is advised in the use of these symptoms for the assessment and diagnosis of ODD in children with ID. Once the bias was controlled, the measurement model suggested prevalences of 8.4% (children with ID) and 3% (typically developing children). Theoretical and practical implications are discussed.

Relación entre estrés y malestar psicológico de los padres y problemas emocionales y conductuales en niños preescolares con trastorno del espectro autista / Relationship between parental stress and psychological distress and emotional and behavioural problems in pre-school children with autistic spectrum disorder

INTRODUCCIÓN: Los trastornos del espectro autista (TEA) se caracterizan por deficiencias generalizadas en la comunicación social, estereotipias e intereses restringidos. Los TEA presentan una alta prevalencia de trastornos psiquiátricos adicionales que empeoran su funcionamiento diario y reducen la calidad de vida de ellos y sus familias. MATERIAL Y MÉTODO: En el esfuerzo de identificar características ambientales que expliquen esta alta comorbilidad, esta investigación se ha centrado en la sintomatología de estrés y malestar psicológico de los padres como posibles factores de riesgo. Se realizó un estudio transversal de asociación entre estrés y malestar psicológico de padres de niños preescolares con TEA (2-6 años) y su relación con psicopatología coexistente en niños con TEA. RESULTADOS Y CONCLUSIONES: Altos niveles de estrés y malestar psicológico en los padres están asociados ya desde la primera infancia con psicopatología coexistente en dicha población, específicamente con problemas emocionales y conductuales (p < 0,05). Sin embargo, se necesitan futuros estudios longitudinales para entender mejor la relación causal entre estas variables y su posible relación bidireccional

INTRODUCTION: The Autistic Spectrum Disorders (ASD) are characterised by general deficits in social communication, stereotypes, and restricted interests. The ASD have a high prevalence of additional psychiatric disorders that make their daily functioning worse, and reduces the quality of life of them and their families. MATERIAL AND METHODS: In an effort to identify family environmental characteristics that may influence in the course of additional psychiatric disorders, this study has focused on the symptoms of parental stress and psychological distress as possible risk factors. A cross-section study was carried out on the relationship between the stress and psychological distress of the parents and its relationship with co-existing psychopathology in a population of pre-school children with ASD (2-6 years). RESULTS AND CONCLUSIONS: High levels of stress and psychological distress of the parents arealready associated, since early childhood, with co-existing psychiatric symptoms, specifically with emotional and behavioural problems (p < 0.05). However, further longitudinal studies are needed for a better understanding of the causal relationship between these variables and their possible bidirectional relationship

[Relationship between parental stress and psychological distress and emotional and behavioural problems in pre-school children with autistic spectrum disorder]. / Relación entre estrés y malestar psicológico de los padres y problemas emocionales y conductuales en niños preescolares con trastorno del espectro autista.

INTRODUCTION: The Autistic Spectrum Disorders (ASD) are characterised by general deficits in social communication, stereotypes, and restricted interests. The ASD have a high prevalence of additional psychiatric disorders that make their daily functioning worse, and reduces the quality of life of them and their families. MATERIAL AND METHODS: In an effort to identify family environmental characteristics that may influence in the course of additional psychiatric disorders, this study has focused on the symptoms of parental stress and psychological distress as possible risk factors. A cross-section study was carried out on the relationship between the stress and psychological distress of the parents and its relationship with co-existing psychopathology in a population of pre-school children with ASD (2-6 years). RESULTS AND CONCLUSIONS: High levels of stress and psychological distress of the parents arealready associated, since early childhood, with co-existing psychiatric symptoms, specifically with emotional and behavioural problems (p < 0.05). However, further longitudinal studies are needed for a better understanding of the causal relationship between these variables and their possible bidirectional relationship.

Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective.

BACKGROUND: Individuals with intellectual and developmental disabilities (IDD) represent a particularly vulnerable group to the threats posed by COVID-19. However, they have not yet been given a voice on how their living conditions have been affected by COVID-19. AIMS: This study aims to report the impact on people with IDD of COVID-19 and the response measures applied in Spain during the lockdown. METHOD: Data on 582 individuals with IDD were collected through a survey. Seven open questions were included to capture the perspectives of people with IDD on COVID-19 and its consequences. Content analysis was performed to identify themes and categories across participant responses. Chi-square tests were used to analyze the relationship between reporting a specific category and participants' characteristics. RESULTS: Supports have been conditioned by the living context. People living in specific settings had fewer natural supports, while those living with their family relied heavily on it. Participants also lacked supports considered necessary. It is worth stressing that persons with IDD have also provided support to others. CONCLUSIONS: Although people with IDD have generally received the assistance they need during the lockdown, it must be ensured that appropriate supports are provided regardless of the context in which they live.

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.

Improving healthcare access for older adults with intellectual disability: What are the needs?

This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty-nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open-ended questions included in a general survey about the health status of older individuals with intellectual disability. Most informants were women and professionals who had known the person with intellectual disability for more than 12 months. A system of categories, which showed good inter-rater agreement, was developed to analyse participants' written responses. Both family members and professionals emphasized the need to improve disability training for healthcare practitioners and highlighted the urgent need for flexibility in the structure of a healthcare system that currently overlooks the specific needs of this vulnerable population.

The PI3K and MAPK/p38 pathways control stress granule assembly in a hierarchical manner.

All cells and organisms exhibit stress-coping mechanisms to ensure survival. Cytoplasmic protein-RNA assemblies termed stress granules are increasingly recognized to promote cellular survival under stress. Thus, they might represent tumor vulnerabilities that are currently poorly explored. The translation-inhibitory eIF2α kinases are established as main drivers of stress granule assembly. Using a systems approach, we identify the translation enhancers PI3K and MAPK/p38 as pro-stress-granule-kinases. They act through the metabolic master regulator mammalian target of rapamycin complex 1 (mTORC1) to promote stress granule assembly. When highly active, PI3K is the main driver of stress granules; however, the impact of p38 becomes apparent as PI3K activity declines. PI3K and p38 thus act in a hierarchical manner to drive mTORC1 activity and stress granule assembly. Of note, this signaling hierarchy is also present in human breast cancer tissue. Importantly, only the recognition of the PI3K-p38 hierarchy under stress enabled the discovery of p38's role in stress granule formation. In summary, we assign a new pro-survival function to the key oncogenic kinases PI3K and p38, as they hierarchically promote stress granule formation.

Disability Policy Implementation From a Cross-Cultural Perspective.

Implementation of disability policy is influenced by social, political, and cultural factors. Based on published work, this article discusses four guidelines considered critical for successful policy implementation from a cross-cultural perspective. These guidelines are to: (a) base policy implementation on a contextual analysis, (b) employ a value-based approach, (c) align the service delivery system both vertically and horizontally, and (d) engage in a partnership in policy implementation. Public policy should be understood from a systems perspective that includes cross-cultural issues, such as how different stakeholders are acting and the way they plan and implement policy.