Cognitive profiles in children and adolescents with Down syndrome.

The Down syndrome (DS) phenotype is usually characterized by relative strengths in non-verbal skills and deficits in verbal processing, but high interindividual variability has been registered in the syndrome. The goal of this study was to explore the cognitive profile, considering verbal and non-verbal intelligence, of children and adolescents with DS, also taking into account interindividual variability. We particularly aimed to investigate whether this variability means that we should envisage more than one cognitive profile in this population. The correlation between cognitive profile and medical conditions, parents' education levels and developmental milestones was also explored. Seventy-two children/adolescents with DS, aged 7-16 years, were assessed with the Wechsler Preschool and Primary Scale of Intelligence-III. Age-equivalent scores were adopted, and Verbal and Non-Verbal indices were obtained for each individual. The cognitive profile of the group as a whole was characterized by similar scores in the verbal and non-verbal domain. Cluster analysis revealed three different profiles, however: one group, with the lowest scores, had the typical profile associated with DS (with higher non-verbal than verbal intelligence); one, with intermediate scores, had greater verbal than non-verbal intelligence; and one, with the highest scores, fared equally well in the verbal and non-verbal domain. Three cognitive profiles emerged, suggesting that educational support for children and adolescents with DS may need to be more specific.

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.

"It's ok, mom. I got it!": Exploring the experiences of young adults with intellectual disabilities in a postsecondary program affected by the COVID-19 pandemic from their perspective and their families' perspective.

Students' resilience in a postsecondary program for individuals with an intellectual disability impacted by the COVID-19 disruption and the challenges they faced during this time was captured in the context of social network analysis interviews that included students' and families' experiences as they managed the pandemic. Students' experiences spoke to their resilience in using the skills they gained through the program to navigate the COVID-19 disruption even though it was sometimes tricky. Parents' experiences revealed their increased confidence and sense of pride in their adult children when they observed growth in independence, self-determination, and familiarity with technology. Innovative and engaging instructional practices and e-mentoring support offered by peer mentors motivated students in their academics and encouraged their social development during this time. Student and parent experiences offer hope that young adults with an intellectual disability can gain skills in a postsecondary program that better prepares them to meet life's challenges.

Perceptions of people with intellectual and developmental disabilities about COVID-19 in Spain: a cross-sectional study.

BACKGROUND: As the world battles COVID-19, there is a need to study the perceptions of people with intellectual and developmental disabilities (IDD) about the effects of the pandemic and associated lockdown on their lives. This work explores the perceptions of Spaniards with IDD during the lockdown with respect to four topics: access to information, emotional experiences, effects on living conditions and access to support. METHODS: The topics were explored using a subset of 16 closed-ended questions from an online survey. In total, 582 participants with IDD completed the survey. The frequencies and percentages of responses to the questions were calculated, and chi-square tests performed to explore the relationship between participants' sociodemographic characteristics and responses. Given that people differed in the way in which they completed the survey, the relationship between participants' responses and completion method was also analysed. RESULTS: Participants reported that the pandemic and subsequent lockdown have had a deleterious effect on their emotional well-being (around 60.0% of participants) and occupations (48.0% of students and 72.7% of workers). Although access to information and support was reportedly good overall, being under the age of 21 years and studying were associated with perceptions reflecting poorer access to information (V = .20 and V = .13, respectively) and well-being support (V = .15 and V = .13, respectively). Being supported by a third party to complete the survey was consistently related to perceptions of worse outcomes. CONCLUSIONS: The study yielded data on the perceptions of people with IDD regarding the effects that COVID-19 and the subsequent lockdown have had on their lives. Suggestions on how to overcome the difficulties reported and future lines of research are discussed.

Conceptual model of sport-specific classification for para-athletes with intellectual impairment.

The present paper describes the conceptual basis of evidence-based classification of para-athletes with intellectual impairment (II). An extensive description of the theoretical and conceptual foundation of the system as currently conceived is provided, as are examples of its applications in the three sports included in the Paralympic programme for II-athletes in 2020 (i.e., athletics, swimming and table tennis). Evidence-based classification for II-athletes is driven by two central questions: i. How can intellectual impairment be substantiated in a valid and reliable way, and ii. Does intellectual impairment limit optimal sport proficiency? Evolution of the system and current best practice for addressing these questions are described, and suggestions for future research and development are provided. Challenges of understanding and assessing a complex (multifaceted and intersectional) impairment in the context of sport also are considered.

Identifying Individuals With Intellectual Disability Within a Population Study.

BACKGROUND: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge. OBJECTIVE: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID. METHODS: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III. RESULTS: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation. DISCUSSION: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

Factors related to preventive COVID-19 infection behaviors among people with mental illness.

BACKGROUND/PURPOSE: Because of the spread of novel coronavirus disease 2019 (COVID-2019), preventive COVID-19 infection behaviors become important for individuals, especially those who are vulnerable. The present study proposes a model to explain the preventive COVID-19 infection behaviors among people with mental illness in Taiwan. METHODS: A cross-sectional design was carried out and 414 patients with mental illness (230 males [55.6%]; mean age = 46.32 [SD = 10.86]) agreed to participate in the study. All the participants completed the Preventive COVID-19 Infection Behaviors Scale, Self-Stigma Scale-Short, Believing COVID-19 Information Scale, Fear of COVID-19 Scale, and Depression Anxiety Stress Scale-21. Regression models and structural equation modeling (SEM) were applied to examine the factors associated with preventive COVID-19 infection behaviors. RESULTS: Both regression models and SEM showed that trust in COVID-19 information sources (standardized coefficient [ß] = 0.211 in regression; ß = 0.194 in SEM) and fear of COVID-19 (ß = -0.128 in regression; ß = -0.223 in SEM) significantly explained preventive behaviors among individuals with mental illness. The SEM further showed that fear of COVID-19 was significantly explained by trust in COVID-19 information sources (ß = 0.220) and self-stigma (ß = 0.454). CONCLUSION: Based on the results, healthcare providers should help individuals with mental illness reduce self-stigma and fear of COVID-19 which would consequently improve their preventive COVID-19 infection behaviors. Moreover, improving trust in COVID-19 information sources for individuals with mental illness may be another method to improve their preventive behaviors.

Medication management in the context of mental illness: an exploratory study of young people living in Australia.

BACKGROUND: Young people face significant challenges when managing a mental illness, such as acquiring treatment autonomy, being inexperienced users of the healthcare system and associated peer-related stigma. While medication use can be challenging in its own right, there is comparatively little information about the associated experiences and needs of young people with mental illness, particularly in the Australian context. This exploratory study will provide valuable insight into how this group is currently supported in relation to medication use. METHODS: Young people (aged 14-25 years) who had used a prescription medication for any mental illness for a minimum of 2 months were eligible to participate in this qualitative exploratory study. Semi-structured interviews were conducted between October 2017-September 2018 in consultation rooms at two youth-focused mental health support organisations in Brisbane, Queensland. Interview questions explored how participants managed their medication and related experiences. Interviews were transcribed verbatim and descriptively analysed using thematic analysis. RESULTS: Eighteen young people discussed their lived experience during interviews averaging 50 min in duration. Finding the right medication that reduced symptom severity with minimal side-effects was identified as a complex experience for many, particularly when there was a lack of information, support or reduced financial capacity. Young people described a range of strategies to manage medication side-effects, changes and to support routine medication use. CONCLUSIONS: Young people persevered with taking medication to manage a mental illness within a healthcare system that does not adequately support this vulnerable population. There remains a clear directive for healthcare professionals to provide credible information that proactively engages young people as healthcare participants, and for policy makers to consider financial burden for this population with limited financial capacity.

Re: AB (Termination of Pregnancy) [2019] EWCA CIV 1215: 'Wishes and Feelings' Under the Mental Capacity Act 2005.

In Re: AB (Termination of Pregnancy), the Court of Appeal was asked to consider an assumption made about the future living arrangements of a pregnant patient, and the weight to be ascribed to her wishes and feelings when she had no real understanding of her predicament. This commentary explores the importance of taking into account the perspective of the patient, even if suffering from a mental disorder, and it will analyse the existing common law to show that the weaker the ability of the patient to form her own wishes and feelings, the more appropriate it would be to rely on the remaining evidence.

'We need to share our stories': the lives of Pakistanis with intellectual disability and their guardians.

INTRODUCTION: The experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically. METHOD: The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice. FINDINGS: Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians. DISCUSSION: We discuss implications for research and practice.

Intervenções Assistidas por Animais na expressão psíquica de Deficientes Intelectuais Adultos (IAA e Deficiência intelectual) / Intervenciones Asistidas por Animales en la expresión psíquica de Deficientes Intelectuales Adultos (IAA e Deficientes Intelectuales) / Animal-Assisted Interventions in the Psychic Expression of Intellectually Disabled Adults (IAA and Intellectually Disabled)

INTRODUÇÃO: Esta pesquisa problematiza a interação entre sujeitos adultos com Deficiência Intelectual e cães, sob a perspectiva das Intervenções Assistidas por Animais (IAA). OBJETIVO: Descrever os efeitos da IAA na expressão verbal e não verbal de conteúdos psíquicos em sujeitos adultos com deficiência intelectual. MÉTODO: Pesquisa de natureza qualitativa. Participaram 04 sujeitos do sexo feminino, idades entre 39 a 63 anos, com deficiência intelectual. Cão co-terapeuta: Amin, da raça Golden Retriever, 7 anos, selecionado de acordo com critérios de protocolos internacionais, conduzido pela pesquisadora. Foram realizadas 07 sessões de IAA, em grupo, com duração de 35 minutos cada, no decorrer de 03 meses. Foram aplicados os testes HTP e Wartegg realizados pré e pós sessões de IAA, cujos resultados foram analisados comparativamente intra sujeito. RESULTADOS: Na população estudada verificou-se em todos os sujeitos a expansão da personalidade e a redução da ansiedade pós IAA, além do aumento de verbalização e o cão como forte instrumento motivador. CONCLUSÃO: Os resultados desta pesquisa indicam a ocorrência de modificações psíquicas, verbais e não verbais, em diferentes graus, nos sujeitos com DI estudados.

INTRODUCTION: This research problematizes the interaction between adult subjects with Intellectual Disability and dogs, from the perspective of Animal-Assisted Interventions (IAA). OBJECTIVE: To describe the effects of IAA on verbal and nonverbal expression of psychic contents in adults with intellectual disabilities. METHOD: Qualitative research. Four female subjects, aged between 39 and 63 years, with intellectual disability participated. Dog co-therapists: Amin, Golden Retriever, 7 years old, selected according to criteria of international protocols, conducted by the researcher. There were 07 IAA sessions, in a group, lasting 35 minutes each, during the course of 03 months. The HTP and Wartegg tests were performed before and after IAA sessions, the results of which were analyzed comparatively. RESULTS: In the studied population, all subjects showed personality expansion and reduction of anxiety after IAA, in addition to increased verbalization and the dog as a strong motivating instrument.. CONCLUSION: The results of this research indicate the occurrence of psychic, verbal and nonverbal expression changes in different degrees in subjects with DI studied.

INTRODUCCIÓN: Esta investigación problematiza la interacción entre sujetos adultos con discapacidad intelectual y perros, desde la perspectiva de las intervenciones asistidas por animales (IAA). OBJETIVO: Describir los efectos de la IAA en la expresión verbal y no verbal de contenidos psíquicos en sujetos adultos con discapacidad intelectual. MÉTODO: Investigación de naturaleza cualitativa. Participaron 04 sujetos del sexo femenino, edades entre 39 a 63 años, con discapacidad intelectual. Perro co-terapeutas: Amin, de la raza Golden Retriever, 7 años, seleccionado de acuerdo con criterios de protocolos internacionales, conducido por la investigadora. Se realizaron 7 sesiones de IAA, en grupo, con una duración de 35 minutos cada una, en el transcurso de 03 meses. Se aplicaron las pruebas HTP y Wartegg realizadas pre y post sesiones de IAA, cuyos resultados se analizaron comparativamente. RESULTADOS: En la población estudiada se verificó en todos los sujetos la expansión de la personalidad y la reducción de la ansiedad post IAA además de una mayor verbalización y el perro como un fuerte instrumento de motivación.. CONCLUSIÓN: Los resultados de esta investigación indican la ocurrencia de modificaciones psíquicas, expresión verbal y no verbal en diferentes grados en los sujetos con DI estudiados.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

"I feel that if I didn't come to it anymore, maybe I would go back to my old ways and I don't want that to happen": Adapted sex offender treatment programmes: Views of service users with autism spectrum disorders.

BACKGROUND: The cognitive and behavioural profile associated with autism spectrum disorders (ASD) includes difficulties with social interaction, communication and empathy. Each of these may present barriers to effective participation in sexual offending treatment, leading to poorer outcomes. METHOD: Semi-structured interviews were conducted with 13 men with autism and an intellectual disability (including the borderline range) who had completed an adapted sex offender treatment programme. Grounded Theory was used to explore the men's experiences of treatment and perceptions of risk. RESULTS: The men's perceptions of sexual risk were inextricably linked to constructs of identity and shaped their opinions of treatment effectiveness. Risk of reoffending was conveyed through narratives of changes in self and circumstances and included notions of blame and culpability. CONCLUSIONS: The findings illustrated some clear benefits for men with ASD associated with attending adapted sex offender treatment programmes, including delivery of treatment within groups and opportunities for social development. The study supports the view that difficulties with empathy and cognitive flexibility complicates treatment for sexual offending.

Remarkable similarities in four list theories of a good life for people with intellectual disability.

A good life is the ultimate goal of a number of theories and approaches to providing supports and services for people with intellectual disability. This article examines four list theories of a good life for people with intellectual disability. Twelve themes of a good life were identified using a basic or conventional content analysis: higher meaning and purpose, respect, rights, social inclusion and belonging, close relationships, contribution, voice and choice, emotional well-being, growth and development, home, materiality, and health. Remarkable similarities in items between these four list theories suggest a broad underlying consensus as to the basic elements a good life for people with intellectual disability.

Peer victimization and its relationship to self-esteem in children with mild intellectual disability and borderline intellectual functioning in regular and special schools: An exploratory study in urban Bengaluru.

The Research in the field of mental health and educational needs of children with intellectual disabilities has increased over the years. However, the focus on milder disabilities such as mild intellectual disability and borderline intellectual functioning (MBID; intelligence quotient: 50-85) is still limited. The current study aimed at understanding peer victimization and its relationship to the self-esteem of children with MBID in regular and special schools. The study utilized a cross-sectional research design with a sample of 40 children who met the inclusion criteria. On analysis, the results showed that peer victimization was more common in regular schools (U = 51, p ≤ 0.001), wherein the peer victimization had a significant negative correlation with their self-esteem (r = -0.536, p ≤ 0.001). Overall, the findings implied the need for promotion of inclusive education in regular schools by sensitization against peer victimization of children with disabilities.

Connectedness and ICT: Opening the door to possibilities for people with intellectual disabilities.

This study aimed to investigate the experiences of people with intellectual disability (ID) using information and communication technologies (ICTs) and the ways these technologies foster social connectedness. In partnership with a community mental health organization, this qualitative descriptive study explored the experiences of 10 people with ID using ICTs. Participants described how ICTs Opened the Door to Possibilities in their life - ICTs provided an avenue for connecting with other people, a means to pursue personal interests and a tool for organizing everyday life. Opening the door to possibilities was further understood as movement towards digital inclusion for people with ID, conceptualized as the fit between social opportunity and personal skills. We have identified the prominent role social supports play in creating (and constraining) opportunities for digital inclusion, and that digital inclusion has the potential to enable social connectedness and the development of agency. Consideration of the complex interaction between social opportunity and personal skills, and the mediating influence of supports, will enhance the inclusion of people with ID.

Life after release from prison: The experience of ex-offenders with intellectual disabilities.

BACKGROUND: In the UK, little is known about the experience of ex-prisoners with intellectual disabilities. METHOD: A qualitative study was therefore conducted to investigate what life is like for ten men with intellectual disabilities who left prison at least 9 months previously. Semi-structured interviews were employed to explore the men's views of post-prison life, including opportunities/challenges and support received from services. RESULTS: Through interpretative phenomenological analysis, four over-arching themes were constructed: the nature of support and services, the difficulty of staying out of trouble, the importance of family and the need to act the "tough guy". The participants reported being extremely under-supported. They were often hostile about staff who they felt were too focused on their previous crime. CONCLUSIONS: In general, men were very under-supported and the upheavals of post-prison lives appeared to be "normalized" by them. Better understanding of their lives within their social context would benefit their community re-entry.

Language nutrition for language health in children with disorders: a scoping review.

The quantity and quality of child-directed speech-language nutrition-provided to typically-developing children is associated with language outcomes-language health. Limited information is available about child-directed speech to children at biological risk of language impairments. We conducted a scoping review on caregiver child-directed speech for children with three clinical conditions associated with language impairments-preterm birth, intellectual disability, and autism-addressing three questions: (1) How does child-directed speech to these children differ from speech to typically-developing children? (2) What are the associations between child-directed speech and child language outcomes? (3) How convincing are intervention studies that aim to improve child-directed speech and thereby facilitate children's language development? We identified 635 potential studies and reviewed 57 meeting study criteria. Child-directed speech to children with all conditions was comparable to speech to language-matched children; caregivers were more directive toward children with disorders. Most associations between child-directed speech and outcomes were positive. However, several interventions had minimal effects on child language. Trials with large samples, intensive interventions, and multiple data sources are needed to evaluate child-directed speech as a means to prevent language impairment. Clinicians should counsel caregivers to use high quality child-directed speech and responsive communication styles with children with these conditions.