Social skills, behavioral problems, and academic competence of students with intellectual disabilities / Habilidades sociais, problemas de comportamento e competência acadêmica de alunos com deficiência intelectual / Habilidades sociales, problemas de conducta y competencia académica de estudiantes con discapacidad intelectual

This study had as general objective to characterize and associate social skills, behavior problems, and academic competence of students with intellectual disabilities in school inclusion and; as specific objectives to verify predictive values for social skills and differences between groups diagnosed with intellectual disability and other associated diagnoses. This was a quantitative, cross-sectional, descriptive, correlational, predictive, and comparative study. Forty-four students with intellectual disability participated (11 of them presented other associated diagnoses), who were evaluated by 42 guardians and 34 teachers. The instruments used were Social Skills Rating System (SSRS-BR) and the Parental Educative Social Skills Interview Script (RE-HSE-P). The evaluation from guardians and teachers were different. Social skills were negatively associated with behavior problems and positively associated with academic competence; behavior problems and diagnosis were negative predictors to social skills. There were significant differences in the groups. The results highlight the importance of intervention programs to develop social skills.(AU)

O estudo teve como objetivo geral caracterizar e associar habilidades sociais, problemas de comportamento e competência acadêmica de alunos com deficiência intelectual em inclusão educacional e; como objetivos específicos verificar valores preditivos para habilidades sociais e diferenças entre grupos com diagnóstico de deficiência intelectual somente e com outros diagnósticos associados. Trata-se de um estudo quantitativo, transversal, descritivo, correlacional, preditivo e comparativo. Participaram 44 alunos com deficiência (11 apresentavam outros diagnósticos associados), que foram avaliados por 42 responsáveis e 34 professoras. Os instrumentos utilizados foram Social Skills Rating System (SSRS-BR) e Roteiro de Entrevista de Habilidades Sociais Educativas Parentais (RE-HSE-P). A avaliação de responsáveis e professores foi diferente. Habilidades sociais foram negativamente associadas aos problemas de comportamento e positivamente associadas a competência acadêmica; problemas de comportamento e diagnósticos associados foram preditores negativos de habilidades sociais. Houve diferença significativa entre grupos. Resultados evidenciam a importância de programas para promoção de habilidades sociais.(AU)

Este estudio tuvo como objetivo general caracterizar y asociar las habilidades sociales, los problemas de conducta y la competencia académica de estudiantes con discapacidad intelectual en la inclusión escolar; y como objetivos específicos verificar los valores predictivos de las habilidades sociales y las diferencias entre grupos diagnosticados con discapacidad intelectual y otros diagnósticos asociados. Se trató de un estudio cuantitativo, transversal, descriptivo, correlacional, predictivo y comparativo. Participaron 44 estudiantes con discapacidad intelectual (11 de ellos presentaban otros diagnósticos asociados), quienes fueron evaluados por 42 tutores y 34 docentes. Los instrumentos utilizados fueron el Sistema de Evaluación de Habilidades Sociales (SSRS-BR) y el Guion de Entrevista de Habilidades Sociales para Educación de los Padres (RE-HSE-P). Las evaluaciones de los tutores y docentes fueron diferentes. Las habilidades sociales se asociaron negativamente con problemas de conducta y positivamente con la competencia académica; los problemas de conducta y el diagnóstico fueron predictores negativos de las habilidades sociales. Hubo diferencias significativas entre los grupos. Los resultados destacan la importancia de los programas de intervención para desarrollar habilidades sociales con la población estudiada.(AU)

Dyadic Predictors of Willing to Engage in Physical Activity and Emotional Eating in Children and Adolescents with Mild and Moderate Intellectual Disability.

Intellectual disability is associated with increased risk for childhood obesity, and the factors most often associated with this risk are incorrect eating behavior and insufficient amount and intensity of physical activity. As is well known, there area whole range of factors determining lifestyle, but many currently available reports in this field refer to the functioning of children without a diagnosis of intellectual disability, and, as we know, due to numerous individual and environmental barriers, children with ID may function differently in this context than their peers. Therefore, we examined the relationships between the selected variables and divided them into two models: (1) first regression model: child's willingness to engage in physical activity (dependent variable), child's physical limitations related to disabilities and/or comorbidities, child's independence, parents' willingness to engage in physical activity, child's body dissatisfaction (independent variables/predictors); (2) second regression model: child's emotional eating (dependent variable), child's coping with emotions, parents' attitudes, beliefs, and practices about child feeding (restriction and pressure to eat), parents' emotional eating, parents' happiness (independent variables/predictors). A group of 503 parents (of children and adolescents with mild and moderate intellectual disability) completed: the Contour Drawing Rating Scale, the Child Feeding Questionnaire, the Emotional Overeating Questionnaire, the Scale of Experiencing Happiness, and the supplementary survey. Our results allow partial confirmation of the hypotheses related to both of these models: (1) model I: the relationships between the child's willingness to engage in physical activity and all predictors are significant, but the direction of the relationship between the dependent variable and one of the predictors-body dissatisfaction-is opposite to the assumed one (negative relationship); (2) model II: the relationships between the child's emotional eating and almost all predictors are significant, except for the relationship between the dependent variable and pressure to eat. In conclusion, (to the authors' knowledge) this study is the first to assess dyadic predictors of willingness to engage in physical activity and emotional eating in children and adolescents with mild and moderate intellectual disability. It allows for a better understanding of the attitudes, beliefs, and experiences of children with intellectual disabilities and their parents, which gives the opportunity (taking into account factors from both individuals from the child-parent dyad) to better design strategies to support pro-health behaviors in children and adolescents from this group (which may improve the effectiveness of overweight prevention and obesity). These findings emphasize how important it is to consider the dynamic of the child-parent dyad when considering how parenting contributes to a child's willingness to engage in physical activity, as well as thatchild's emotional eating.

Botulinum Neurotoxin Injections in Children with Self-Injurious Behaviors.

Self-injurious behaviors are repetitive, persistent actions directed toward one's body that threaten or cause physical harm. These behaviors are seen within a broad spectrum of neurodevelopmental and neuropsychiatric conditions, often associated with intellectual disability. Injuries can be severe and distressing to patients and caregivers. Furthermore, injuries can be life-threatening. Often, these behaviors are challenging to treat and require a tiered, multimodal approach which may include mechanical/physical restraints, behavioral therapy, pharmacotherapy, or in some cases, surgical management, such as tooth extraction or deep brain stimulation. Here, we describe a series of 17 children who presented to our institution with self-injurious behaviors in whom botulinum neurotoxin injections were found helpful in preventing or lessening self-injury.

Deficiência intelectual grave ou profunda: investigação qualitativa de estratégias maternas de enfrentamento / Discapacidad intelectual grave o profunda: investigación cualitativa de estrategias de afrontamiento materno / Severe or profound intellectual disability: a qualitative investigation of maternal coping strategies

RESUMO Objetivou-se investigar estratégias de enfrentamento relatadas por uma amostra de mães brasileiras de filhos com deficiência intelectual grave ou profunda. Os poucos estudos brasileiros sobre este objeto justificaram a exploração qualitativa do tema. Participaram quinze mães recrutadas por conveniência em serviços de saúde de um município do Estado de São Paulo, Brasil. Foram feitas entrevistas semiestruturadas individuais e uma análise temática de conteúdo. Os resultados compreendem quinze temas, induzidos diretamente do corpus e alocados em três pré-categorias baseadas em estudos teóricos sobre coping. Houve um predomínio de menções a estratégias de enfrentamento centradas no problema e nas relações interpessoais, mescladas com estratégias centradas na emoção. Nossas entrevistadas não pareceram considerar-se alvos das políticas indutoras da atenção integral às pessoas com deficiência do Sistema Único de Saúde brasileiro, vigentes há cerca de duas décadas, e cuja efetiva implementação poderia ajudar a extrapolar o cuidado baseado preponderantemente na responsabilidade parental, em suas visões. Em suas falas, há demandas de maior efetividade também dos setores de serviço social, educação e transporte. Apontaram necessidades de maior interação e apoio sociocomunitário, expressando expectativas de um progressivo redesenho cultural da ética do cuidado que fomente ações no âmbito extrafamiliar, diminuindo suas sobrecargas. Esses aspectos das falas das entrevistadas podem ser abordados no manejo clínico dos filhos. Um enfrentamento progressivamente mais saudável da condição por que passam traria benefícios diretos também aos indivíduos com deficiência.

RESUMEN El objetivo fue investigar las estrategias de afrontamiento reportadas por una muestra de madres brasileñas de niños con discapacidades intelectuales severas o profundas. Los pocos estudios brasileños sobre este objeto justificaron la exploración cualitativa del tema. Quince madres participaron, reclutadas por conveniencia en los servicios de salud de un municipio del estado de São Paulo, Brasil. Se realizaron entrevistas semiestructuradas individuales y un análisis de contenido temático. Los resultados comprenden quince temas, inducidos directamente del corpus; fueron asignados en tres categorías previas teóricamente basadas. Las menciones predominantes de estrategias de afrontamiento se referían a aquellos centrados en problemas y relaciones interpersonales, que se mezclaron con estrategias centradas en la emoción. Nuestras entrevistadas no parecían considerarse objetivos de políticas inductoras de una atención integral para las personas con deficiencia en el Sistema Único de Salud de Brasil, en vigor durante aproximadamente dos décadas, y cuya implementación efectiva podría ayudar a extrapolar la atención basada principalmente sobre responsabilidad parental, en sus opiniones. Expresaron demandas de una mayor efectividad de los sectores de servicio social, educación y transporte. Señalaron la necesidad de una mayor interacción social y apoyo sociocomunitario, y parecían expresar las expectativas de un rediseño cultural progresivo de una ética de la atención que fomente acciones en el ámbito extrafamiliar, reduciendo sus sobrecargas. Estos aspectos de las declaraciones de los entrevistados pueden abordarse en el manejo clínico de sus hijos. Un afrontamiento más saludable de la condición que están experimentando también beneficiaría a las personas con discapacidades.

ABSTRACT. The objective was to investigate coping strategies reported by a sample of Brazilian mothers of children with severe or profound intellectual disabilities. The few Brazilian studies on this object justified the present qualitative exploration of the theme. Fifteen mothers participated, recruited by convenience in health services from a municipality in the interior of the state of São Paulo, Brazil. Individual semi-structured interviews and a thematic content analysis were carried out. The results comprise fifteen themes, induced directly from the corpus; they were allocated into three pre-categories based on theoretical studies on coping. Predominant mentions of coping strategies concerned those centered on problem and interpersonal relationships, which were mixed with strategies focused on emotion. Our interviewees did not seem to consider themselves targets of policies that induce a comprehensive care for people with disability in the Brazilian Unified Health System, in force for about two decades, and whose effective implementation could help extrapolate care based predominantly, on parental responsibility in the views of the participants. They expressed demands for a greater effectiveness also from the sectors of social service, education and transport. They pointed out the need for greater social interaction and socio-community support, seeming to express expectations of a progressive cultural redesign of an ethics of care that fosters actions in the extra-family sphere, reducing their overloads. These aspects of the interviewees' statements can be addressed in the clinical management of their children. A progressively healthier coping with the condition they are experiencing would also benefit individuals with disabilities.

Adults with Intellectual Disability and Autism Spectrum Disorder: What Is the Evidence around the Use of Polypharmacy.

A review on the mental health needs of adults with intellectual disability (ID) and autism spectrum disorder (ASD) published just over 10 years ago found a limited evidence base for pharmacological intervention in this group. The aim of this paper was therefore to review the evidence in the subsequent 10 years, with a focus on polypharmacy use in adults who have both ID and ASD. A critical literature review of key papers published from 2009 to 2021 was undertaken on adults with both ID and ASD and related to psychopharmacology, polypharmacy, antipsychotics, antidepressants, mood stabilisers and anxiolytics interventions in improving symptoms. After excluding articles for lack of relevance, a review with a focus on the use of polypharmacy was carried out on the retrieved results. Four papers were identified as relevant to adults with both ID and ASD. Three main themes were identified in the review, including the application of pharmacogenetics, the influence of national policy on prescribing practices and safety concerns in a population with multiple health comorbidities. The past decade has produced a small increase in the evidence base on psychopharmacology use in adults with ID and ASD. However, more evidence on the effectiveness and impact of long-term polypharmacy use is required.

Physical activity and mental health in children and adolescents with intellectual disabilities: a meta-analysis using the RE-AIM framework.

BACKGROUND: Children and adolescents with intellectual disabilities (IDs) tend to have lower levels of physical activity and poorer mental health than their typically developing peers. Studies on the effects of physical activity on the mental health of children with IDs using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework are scarce. METHODS: A systematic literature review using six databases (CINAHL, Eric, PsycINFO, PubMed, SPORTDiscus, and Web of Science) was conducted from January 2000 to September 2021. Studies reporting at least one physical activity intervention and mental health outcome in children and adolescents with IDs aged between 5 and 17 years were included in the meta-analysis. Preferred Reporting Items for Systematic Review and Meta-Analysis guideline, Comprehensive Meta-Analysis, and the RE-AIM framework were utilized. RESULTS: A total of 15 studies that met the inclusion criteria were included in the meta-analysis. The effects of physical activity on mental health in children and adolescents with IDs were significant and large (Hedges' g = 0.897, p < 0.01), with medium effects on psychological health (Hedges' g = 0.542, p < 0.01) and large effects on cognitive function (Hedges' g = 1.236, p < 0.01). Randomized controlled trial (RCT) design and intervention components (> 120 minutes per week, therapeutic, and aerobic exercise) demonstrated the strongest effects. Moreover, study background (publication year, study location, and sample size), participant characteristics (age and sex), and Maintenance (RE-AIM framework) moderated the effects of physical activity on mental health. Based on the RE-AIM framework, there were higher proportions in the dimensions of Reach and Effectiveness than Adoption, Implementation, and Maintenance. CONCLUSIONS: Physical activity appears to have positive effects on mental health, including psychological health and cognitive function, in children and adolescents with IDs. Physical activity interventions using the RE-AIM framework are recommended to assess short- and long-term impacts and translate scientific evidence into practice. TRIAL REGISTRATION: The protocol for this meta-analysis was registered with PROSPERO ( CRD42021256543 ).

Eye-tracking-based experimental paradigm to assess social-emotional abilities in young individuals with profound intellectual and multiple disabilities.

Individuals with Profound Intellectual and Multiple Disabilities (PIMD) experience a combination of severe cognitive and motor impairments frequently associated with additional sensory deficits and numerous medical disorders. The purpose of the present study was to propose an experimental paradigm based on eye-tracking that combines various pre-existing tasks from infancy research as an assessment tool. This would enable the investigation of social-emotional abilities in nine young individuals with PIMD through their visual preferences for different types of stimuli. The first objective was to test the feasibility of this paradigm, by expecting individuals to look more at the tasks' presentation screen than elsewhere during its implementation. The second objective was to investigate whether PIMD individuals exhibit visual preferences for (a) biological (vs. non-biological) motion, (b) socially salient (vs. non-social) scenes, (c) the facial area of the eyes (vs. the mouth), (d) happy (vs. angry) faces, (e) objects of joint attention (vs. non-looked at ones), and for (f) prosocial (vs. anti-social) behaviors similar to those of a control group of typically developing children aged two years on average. Overall, the feasibility of this paradigm proved to be good, resulting in high individual looking rates that were not affected by the presentation or the content of the tasks. Analyses of individual social-emotional abilities, supported by the visual preference patterns of each PIMD individual, firstly revealed strong-but expected-variability both within and between subjects, and secondly highlighted some individual task-specific abilities although few similarities between these individual results and those of the control group were found. These findings underline the great relevance of using this type of paradigm for assessing PIMD individuals and thus contribute to a better understanding of their social and emotional development.

Systemic Review and Meta-analysis of the Intellectual Integrity of Children with Neurofibromatosis Type 1.

BACKGROUND: Cognitive impairment is a common neurologic complication of neurofibromatosis type 1 (NF-1) in childhood. A great number of learning disabilities appear in 30%-65% of children with NF-1. The aim of the study is to compare intelligence quotient (IQ) scores between children with NF-1 and comparable control groups. METHODS: A literature review was conducted using the following databases: Cochrane, PubMed, Wiley, Microsoft Academic, and Google Scholar. We identified 180 papers. The pertinence of any study to the inclusion criteria was determined by assessing the title, key words, and abstracts. Data were extracted using multiple variables that were formulated incongruent with the study aim and then further analyzed. RESULTS: Eleven articles met our criteria, with the highest level of evidence of 3c. A total of 483 NF1 and 443 control participants were included in this meta-analysis. The average and standard deviation of the age was 9.15 ± 3.15 years with an age range of 3.3-18 including 488 male and 438 female. The pooled estimate of the mean difference in all 3 parameters used full-scale IQ, verbal IQ, and performance IQ. Statistically, there was a significantly lower IQ in the NF-1 group compared with the control group with a 95% CI and (P < 0.00001). CONCLUSION: The current meta-analysis illustrated a significant intellectual deficit in children with NF-1 compared with their typically developed peers who were matched by age. Performance IQ was significantly impaired compared with verbal IQ in NF-1 children. The current findings may guide experts to tailor individualized educational programs for children with NF-1.

Predictors of community-based employment for young adults with intellectual disability and co-occurring mental health conditions.

PURPOSE: To identify predictors of community-based employment and employment quality for young adults ages 23-30 with intellectual disability and co-occurring mental health conditions (YA-ID-MH). METHODS: We conducted secondary analysis of the 2017-2018 National Core Indicators® (NCI®) In-Person Survey. The NCI® survey was conducted in 35 states and Washington DC. Participants: YA with ID, ages 23-30 who had complete data. We conducted multiple regression analyses to examine demographic and environmental predictors of community-based employment, in addition to employment quality indicators: hourly wages, hours worked, and job duration. We also descriptively examined job satisfaction. RESULTS: YA-ID-MH were somewhat less likely to be employed per record review and self-report than YA with ID only, but these findings did not reach statistical significance. On average, YA with ID only had higher hourly wages and worked more hours than those with ID-MH, but there were no significant differences in job duration. For YA-ID-MH, predictors of employment included gender, race, level of ID, and residential setting. Multiple demographic and environmental factors predicted employment quality. CONCLUSIONS: YA-ID-MH experience employment disparities compared to YA with ID only. Service providers should specifically attend to those at the highest risk of unemployment/low quality employment.IMPLICATIONS FOR REHABILITATIONYoung adults with intellectual/developmental disabilities and co-occurring mental health conditions (ID-MH) experience employment disparities.Young adults with ID-MH who are non-white and female may have particularly low employment rates and employment quality.Societal-level interventions to address racial and gender-based bias may support individuals with ID-MH to acquire and maintain jobs by addressing disparities in social networks/social capital and ensuring equitable service provision and supports for those at the highest risk for unemployment.Policy makers should consider additional funding for employment services for transition-age youth with ID-MH, particularly those from marginalized populations.

Para Além do QI: Avaliação do Comportamento Adaptativo na Deficiência Intelectual / Beyond IQ: Assessing Adaptive Behavior in Intellectual Disability / Más Allá del Coeficiente Intelectual: Evaluación del Comportamiento Adaptativo en la Discapacidad Intelectual

A Deficiência Intelectual (DI) é caracterizada por limitações de inteligência e comportamento adaptativo, que se originam no período desenvolvimental. O comportamento adaptativo (CA) representa o conjunto de habilidades conceituais, sociais e práticas que são aprendidas e executadas por pessoas em suas atividades diárias. Este estudo teórico objetiva discutir a importância do exame do CA na avaliação psicológica de pessoas com DI. É abordado o papel desse exame no diagnóstico, na classificação de gravidade e no planejamento de intervenções e são fornecidas orientações sobre procedimentos e ferramentas de avaliação do CA. As considerações finais situam o conhecimento sobre o CA como uma ferramenta indispensável ao psicólogo que trabalha com a avaliação psicológica da DI e aponta a necessidade de pesquisas de adaptação ou construção de medidas de CA validadas para o Brasil. (AU)

Intellectual Disability (ID) is characterized by limitations of intelligence and adaptive behavior originating in the developmental period. Adaptive behavior represents the set of conceptual, social and practical skills learned and used by people in their daily activities. This theoretical study aims to discuss the importance of examining adaptive behavior in the psychological assessment of people with ID. The role of this examination in the diagnosis, severity classification, and intervention planning is also addressed. Guidance on procedures and tools for assessing adaptive behavior is provided. Final considerations place knowledge about adaptive behavior as an indispensable tool for the psychologist that works evaluating ID and emphasize the need for adaptation or construction of validated adaptive behavior measures for Brazil. (AU)

La Discapacidad Intelectual (DI) se caracteriza por limitaciones de inteligencia y conducta adaptativa (CA) que se originan en el período de desarrollo. La CA representa el conjunto de habilidades conceptuales, sociales y prácticas que las personas aprenden y realizan en sus actividades diarias. Este estudio teórico tiene como objetivo discutir la importancia de examinar la CA en la evaluación psicológica de las personas con DI. Se discute el papel de este examen en el diagnóstico, la clasificación de la gravedad y la planificación de la intervención; asimismo, se proporciona orientación sobre procedimientos y herramientas para evaluar la conducta adaptativa. Las consideraciones finales sitúan el conocimiento sobre la CA como una herramienta indispensable para el profesional que trabaja con la evaluación psicológica de la DI y señala la necesidad de investigación de la adaptación o construcción de medidas de CA validadas para Brasil. (AU)

[Cancer in children with intellectual disabilities: Questioning and ethical issues]. / Cancer chez un enfant porteur de handicap intellectuel : questionnement et enjeux éthiques.

The Parents and Caregivers group in the face of ethics in pediatrics of the Île-de-France Ethics Area wondered about the association of the words Disability and Cancer by focusing on the study of the course of children with intellectual disability, treated for cancer. These situations are exceptional, the number of cases in France must not be more than fifty per year. We gathered the testimony of five families of children using a semi-directive survey taking up the journey from birth, announcement of the handicap, the diagnosis of cancer and its treatment. The verbatim show that each story is unique and rich in lessons, despite the feeling of "double penalty": "He did not deserve this, a handicap plus cancer is a lot for one person", "the shot moreover." A healthcare team was also interviewed and raised an additional question: "First, the double penalty… then, what's the point?" Through these testimonies, we sought to question the ethical principles of care, which can be shaken up in these extraordinary supported.

A pessoa com deficiência intelectual e a compreensão de sua existência / The person with intellectual disability and the understanding of their existence / La persona con discapacidad intelectual y la comprensión de su existencia

Frequentemente as pessoas com deficiência intelectual (DI) não são reconhecidas como capazes de atribuírem significados a sua existência, por apresentarem uma limitação intelectual. Contudo, elas podem compreender diversas questões psicológicas em sua vida. Embasado na Psicologia Existencial Sartriana, o objetivo deste estudo é investigar como a pessoa com DI compreende sua existência, a partir dos sentidos que atribui a si e as suas relações. O método fenomenológico foi escolhido para a coleta e a análise dos dados. Participaram dez adultos com DI, estudantes de uma Escola Especial de Curitiba. Os resultados evidenciaram sentimentos de solidão e abandono por parte dos participantes, decorrente da ausência afetiva e do diálogo com outras pessoas; a angústia diante da sua liberdade, em um contexto onde não lhes são permitidos fazerem escolhas autênticas; a dificuldade de compreensão de seus sentimentos e o desejo de valorização de suas emoções; a escola como o local onde encontram maiores oportunidades de relacionamentos, mas onde a reflexão sobre as situações cotidianas que vivenciam apresentam-se de modo limitado. Reflete-se que estes aspectos existenciais devem ser considerados nos estudos e nos serviços direcionados às pessoas com DI, para que sua liberdade seja reconhecida, viabilizando a construção de seu projeto existencial.

Often people with intellectual disabilities (ID) are not recognised as capable of attributing meanings to their existence because they have an intellectual limitation. However, they can understand various psychological issues in their lives. Based on the Sartrian existential psychology, the objective of this study is to investigate how the person with ID understands his/her existence, from the meanings they attribute to themselves and their relationships. The phenomenological method was chosen for data collection and analysis. Ten adults with ID participated, students of a Special School in Curitiba. The results showed feelings of loneliness and abandonment on the part of the participants, resulting from absence of affect and dialogue with others; the anguish before their freedom, in a context where they are not allowed to make authentic choices; the difficulty of understanding their feelings, and the desire to value their emotions; the school as the place where they find greatest opportunities for relationships, but where reflection on the everyday situations they experience is limited. It is argued that these existential aspects must be considered in the studies and services directed to people with ID, so that their freedom is recognized, enabling the construction of their existential project.

A menudo las personas con discapacidad intelectual (DI) no son reconocidas como capaces de atribuir significados a su existencia por su limitación intelectual. Sin embargo, pueden comprender diversas cuestiones psicológicas en su vida. Basado en la Psicología existencial Sartriana, el objetivo de este estudio es investigar cómo la persona con DI comprende su existencia, a partir de los sentidos que se atribuye a sí mismo y sus relaciones, por medio del el método fenomenológico. Participaron diez adultos con DI, estudiantes de una escuela especial de Curitiba. Los resultados evidenciaron sentimientos de soledad y abandono por parte de los participantes, resultante de la ausencia afectiva y del diálogo con otras personas; la angustia ante su libertad, en un contexto donde no se les permite hacer elecciones auténticas; la dificultad de comprender sus sentimientos y el deseo de valorar sus emociones; la escuela como el lugar donde encuentran mayores oportunidades de relaciones, pero donde la reflexión sobre las situaciones cotidianas que experimentan se presentan de modo limitado. Se refleja que estos aspectos existenciales deben ser considerados en los estudios y en los servicios dirigidos a las mismas, para que su libertad sea reconocida, permitiendo la construcción de su proyecto existencial.

Collecting to understand: the art of children and the medical-pedagogical approach in twentieth-century Portugal.

In this essay I look at the art of children as a tool in the medical-pedagogical approach, as proposed by the founder of child psychiatry in Portugal, Vítor Fontes (1893-1979). First, the topic of the art of children is introduced, and the second part focuses on the model of medical pedagogy as it was practised in Portugal. The third and fourth parts present Fontes's own investigations on the drawings of children with intellectual disabilities under observation at the Instituto Médico-Pedagógico António Aurélio da Costa Ferreira (IAACF) in Lisbon. In the conclusion it is argued that Fontes contributed to the development of child psychiatry in Portugal by showing that children's art can mirror their cognitive and emotional development.

Epilepsy in adult patients with tuberous sclerosis complex.

OBJECTIVES: Little is known about the evolution of epilepsy in individuals with tuberous sclerosis complex (TSC) in adulthood. This study aims at describing the characteristics of epilepsy in adult TSC patients attending a single multidisciplinary clinic. MATERIALS AND METHODS: We collected data about epilepsy (age at onset, seizure types, history of infantile spasms (IS), epilepsy diagnosis and outcome), genetic and neuroradiological findings, cognitive outcome and psychiatric comorbidities. RESULTS: Out of 257 adults with TSC, 183 (71.2%) had epilepsy: 121 (67.2%) were drug-resistant; 59 (32.8%) seizure-free, at a median age of 18 years. 22% of the seizure-free patients (13/59) discontinued medication. Median age at seizure onset was 9 months. Seventy-six patients (41.5%) had a history of IS. TSC2 pathogenic variants (p = 0.018), cortical tubers (p < 0.001) and subependymal nodules (SENs) (p < 0.001) were more frequent in those who developed epilepsy. Cognitive functioning was lower (p < 0.001) and psychiatric disorders more frequent (p = 0.001). We did not find significant differences regarding age, gender, mutation and tubers/SENs in seizure-free vs drug-resistant individuals. Intellectual disability (p < 0.001) and psychiatric disorders (p = 0.004) were more common among drug-resistant patients. CONCLUSIONS: Epilepsy in TSC can be a lifelong disorder, but one-third of individuals reach seizure freedom by early adulthood. In the long term, age at epilepsy onset has a crucial role in drug resistance and in developing intellectual disability, both in drug-resistant and drug-sensible patients. Patients with drug-refractory seizures tend to develop psychiatric issues, which should be recognized and adequately treated.

Swallowed partial denture in severe intellectual disability patient.

Swallowed partial dentures in elderly patients is an emergency situation that requires a swift response. Here, we report a case involving a patient with severe intellectual disability who swallowed his denture, which lodged at the oesophagus inlet. After failure of endoscopic removal, denture with clasp was removed using long forceps through intraoral approach under intravenous sedation. At the pharynx and oesophagus inlet level, removal of foreign body via intraoral approach should be preferentially considered over open surgery for faster patient recovery.

Psychotropic medication use for adults and older adults with intellectual disability; selective review, recommendations and future directions.

A growing expert consensus has emerged to guide prescribing behavior and monitoring of psychotropic medications in adults and older adults with intellectual disability (ID). However, there is little empirically-derived evidence to inform physician selection of specific categories of psychotropic medication for treatment of "challenging" behaviors in this vulnerable population (such as aggression to self, others and objects; self-injurious behaviors; repetitive stereotypic behaviors; and hyperactivity). Difficulties with application of formal definitional diagnostic criteria and reliable assignment of psychiatric diagnoses to adults with ID, which is often difficult due to their poor communication skills, contribute to confusion and uncertainty surrounding medication selection. Long-term administration of antipsychotic medications are commonly prescribed for challenging behaviors in spite of their questionable long-term efficacy, leading some to suggest that their "episodic" short-term administration for imminent dangerousness to self and others or when difficult-to-find residential placements are threatened is preferred to their long-term administration. Further, literature supports engagement of interdisciplinary treatment teams to seek causes for challenging behaviors, formulate non-pharmacological psychosocial and behavioral plans for their amelioration and, if medications are initiated, convene regular medication monitoring to identify "drug-related problems". Medication monitoring is important because medication-related adverse events cause or contribute to challenging behaviors, which can sometimes be improved by dose reduction, medication discontinuation and/or elimination of polypharmacy and co-pharmacy. Importantly, medications themselves may interfere with self-reported measures of Quality of Life. The data clearly highlight the need for well-designed randomized controlled clinical trials in samples that are homogeneous with respect to severity of ID and residential setting; moreover, they should include a wider variety of clinical and safety outcome measures. Preclinical studies have suggested novel pharmacological strategies to prevent progressive worsening of adaptive function in adults with Down syndrome in particular, and improvement of cognition in adults with ID in general, irrespective of the etiopathogenesis of the ID. Translational clinical trials to address pathogenic mechanisms of ID, as well as challenging behaviors, are anticipated but raise societal issues pertaining to protection of this vulnerable population enrolling in clinical trials and prioritization of urgent therapeutic targets (e.g., amelioration of challenging behaviors versus improving or preserving intellectual functioning).

"Minha filha tem um atraso": considerações sobre uma (pseudo) deficiência intelectual e sua dinâmica familiar / "Mi hija tiene un retraso": consideraciones con respecto a una (seudo) discapacidad intelectual y su dinámica familiar / "My daughter has a backwardness": considerations due to a (pseudo) intellectual disability and its familiar dynamics / "Ma fille a un retard": réflexions sur une (pseudo) déficience intellectuelle et sa dynamique familiale

Este artigo trabalha possibilidades de intervenção com pacientes tidos como deficientes intelectuais. Após apresentar o caso clínico, situamos a noção de deficiência intelectual, seu histórico e lugar no campo das terapêuticas. Em seguida, buscamos os aportes da psicanálise ao tema para compreender os processos psíquicos envolvidos na situação, desde a inibição intelectual até os não ditos familiares e a transmissão intergeracional do traumático. Finalmente, a teoria é articulada aos aspectos do caso. Conclui-se a importância dos psicoterapeutas e equipes de tratamento se familiarizarem com a temática, considerando a relevância dos aspectos psíquicos e relacionais nas produções sintomáticas de aprendizagem. Nos contextos institucionais de tratamento, destaca-se a importância da flexibilidade dos dispositivos clínicos, permitindo intervenções individuais, grupais e familiares, a depender do momento de tratamento

Este artículo trabaja posibilidades de intervención con pacientes tomados como discapaces intelectualmente. Después de presentar el caso clínico, planteamos la noción de discapacidad intelectual, su histórico y sitio en el campo de las terapéuticas. En seguida buscamos los aportes del psicoanálisis al tema, para comprehender los procesos psíquicos involucrados en la situación, desde la inhibición intelectual hasta los no-dichos familiares y la trasmisión intergeneracional del traumático. Por fín, la teoría és articulada a los aspectos del caso. Concluyese la importancia de los psicoterapeutas y equipos de tratamiento familiarizarense con el tema, considerandose el relieve de los aspectos psíquicos y relacionales en las producciones sintomáticas del aprendizaje. En los contextos institucionales de tratamiento, se destaca la importancia de la flexibilidad de los dispositivos clínicos, permitiendo intervenciones individuales, grupales y familiares, de acuerdo al momento del tratamento

This article works possibilities of interventions with patients taken as intellectually disabled. After introducing the clinical case, we present the notion of intellectual disability, its history and place in the therapeutic field. We then highlight psychoanalytical contributions to the subject, to comprehend the psychic processes involved in the situation, from the intellectual inhibition to the unspoken family matters and the traumatic intergenerational transmission. Finally, the theory is articulated with aspects of the case. We conclude about the importance for psychotherapists and treatment teams to be familiar with the subject, considering the importance of psychic and relational aspects on symptomatic productions related to learning. Regarding institutional treatment contexts, we emphasize the flexibility of the clinical settings, allowing individual, group and familiar interventions according to the treatment moment

Cet article traite des possibilités d'intervention auprès de patients considérés comme handicapés mentaux. Après avoir présenté le cas clinique, nous situons la notion de déficience intellectuelle, son histoire et sa place dans le champ thérapeutique. Ensuite, nous recherchons les apports de la psychanalyse au thème pour comprendre les processus psychiques impliqués dans la situation telle que l'inhibition intellectuelle ou le non-dit familier et la transmission intergénérationnelle du traumatique. Enfin, la théorie est articulée aux aspects du cas. Nous concluons qu'il est important pour les psychothérapeutes et les équipes de traitement de se familiariser avec le sujet, compte tenu de la pertinence des aspects psychiques et relationnels dans les difficultés d'apprentissage comme symptôme. Dans les contextes institutionnels de traitement, l'importance de la flexibilité des dispositifs cliniques est mise en évidence, permettant des interventions individuelles, de groupe et familiales, selon le moment du traitement

Effectiveness of a mindfulness-oriented substance use prevention program for boys with mild to borderline intellectual disabilities: study protocol for a randomised controlled trial.

BACKGROUND: Boys with mild to borderline intellectual disabilities (MBID) are at particular risk to drink in harmful ways once they start to consume alcohol. Interventions based on mindfulness have been proven to be effective in preventing substance use, but mostly for adults with MBID. A mindfulness oriented intervention targeting 11-17 years old boys will be tested in a randomised controlled trial. Study aim is to investigate the benefits of this new intervention compared to an active control condition within a 12 months follow-up. METHODS: In this randomised controlled proof of concept study, 82 boys with MBID who consumed any alcohol during the last year will be randomised either to the 6 week mindfulness oriented intervention or the control group receiving a control intervention equal in dose and length. The intervention group undergoes mindfulness training combined with interactive drug education, while the control group completes a health training combined with the same education. In the intention-to-treat analysis the primary outcome is the self-reported delay of first post-intervention drunkeness within a 12 months follow-up time span, measured weekly with a short app-based questionnaire. Secondary outcome is the use of alcohol, tobacco and other drugs within 30 days post-intervention. Changes in neurobiological behavioural parameters, such as impulse control, reward anticipation, and decision making, are also investigated. Other secondary outcomes regard trait mindfulness, emotion regulation, psychopathological symptoms, peer networks, perceived stress, and quality of life. In addition, a prospective registry will be established to record specific data on the population of 11-17 year old boys with MBID without any alcohol experience. DISCUSSION: This study offers the opportunity to gain first evidence of the effectiveness of a mindfulness-oriented program for the prevention of substance use for boys with MBID. TRIAL REGISTRATION: German Clinical Trials Register, DRKS00014042 . Registered on March 19th 2018.

Clozapine in the management of persistent destructive behaviour in a 17-year-old boy with intellectual disability.

The management of challenging and refractory destructive behaviour in young patients with intellectual disability (ID) is a major issue faced by families, carers and healthcare professionals who support them. Often, paediatricians and psychiatrists use various behavioural and psychopharmacological approaches, including polypharmacy. We report on one such patient who benefitted greatly from a trial of clozapine, resulting in less aggression, improved quality of life and potentially huge cost savings. We conclude that clozapine may represent a beneficial though seldom-used option for severe, destructive behaviour in young people with ID.

Educational social skills of parents of children with and without intellectual disability / Habilidades sociais educativas de pais de crianças com e sem deficiência intelectual / Habilidades sociales educativas de padres de niños con y sin discapacidad intelectual

Intellectual disability (ID) affects the functioning of adaptive behavior and social skills (SS). One way to increase SS can be through parental involvement, as long as parents have sufficient educational social skills (ESS) to favor SS teaching. The objective was to evaluate and compare the ESS of parents of children with and without ID, and to investigate correlations between ESS and age, schooling of the child/parent, and socioeconomic status. Participants included a total of 52 parents of children (26 in each group). Parents responded to the ESS Inventory. The analysis identified that the higher the educational level of the children with ID, the greater the general score and the ability of parents to talk and dialogue with them. The results identified statistically significant differences (p < 0.01) between the ESS repertoire of parents of children with and without ID, suggesting necessary interventions with parents of children with ID, especially for parents with a lower socioeconomic level. (AU)

A deficiência intelectual (DI) acomete o funcionamento do comportamento adaptativo e as Habilidades Sociais (HS). Uma forma de ampliar as HS pode ser por meio do envolvimento dos pais, desde que eles tenham Habilidades Sociais Educativas (HSE) suficientes para o ensino das HS. O objetivo foi avaliar e comparar as HSE de pais de crianças com e sem DI, e investigar correlações entre HSE e idade, escolaridade da criança/pais e nível socioeconômico. Participaram 52 pais de crianças (26 em cada grupo). Os pais responderam ao Inventário de HSE. A análise identificou quanto maior a escolaridade das crianças com DI, maior o escore geral e habilidade dos pais para conversar e dialogar com elas. Os resultados identificaram diferenças estatisticamente significativas (p < 0,01) entre HSE de pais de crianças com e sem DI, sugerindo a necessidade de intervenções com pais de crianças com DI, principalmente, para aqueles com menor nível socioeconômico. (AU)

La discapacidad intelectual (DI) afecta el funcionamiento del comportamiento adaptativo y las Habilidades Sociales (HS). Una forma de ampliar las HS puede ser a través de la participación de sus padres, siempre y cuando disponga de Habilidades Sociales Educativas (HSE) suficientes para favorecer la enseñanza de las HS. El objetivo fue evaluar y comparar el HSE de padres de niños con y sin DI, y evaluar correlaciones entre HSE y edad, escolaridad del niño/padre y nivel socioeconómico. Participaron 52 padres de niños (26 en cada grupo). El análisis identificó cuanto mayor la escolaridad de los niños con DI, mayor el puntaje general y habilidad de los padres para conversar y dialogar con ellas. Los padres respondieron el Inventario de HSE. Los resultados identificaron diferencias estadísticamente significativas (p < 0,01) entre el repertorio de HSE de padres de niños con y sin DI, sugiriendo la necesidad de intervenciones con padres de niños con DI, principalmente para los padres con menor nivel socioeconómico, para favorecer el desarrollo socioemocional de estos niños. (AU)