What are the barriers and facilitators to participation of people with Down syndrome? A scoping review.

AIM: To determine the barriers and facilitators of active community participation of children, adolescents, and adults with Down syndrome. METHOD: Searches were completed in five electronic databases to identify original studies about participation of children, adolescents (ages < 18 years), and adults (ages 18-59 years) with Down syndrome. Barriers and facilitators to participation were categorized into four factors: personal, social, environmental, and policy and programme. Findings were analysed and validated by a young adult with Down syndrome and a family member, using the public and patient involvement strategy. RESULTS: Fourteen studies were included: eight with children and adolescents and six with adults. Of the 14 studies, 10 were qualitative and four quantitative. Most studies (n = 9) investigated participation in physical activities, while only a few examined participation in community/social activities (n = 3), daily activities (n = 2), and leisure activities (n = 1). The most commonly cited barriers and facilitators were the availability of programmes and specialized professionals, transportation, as well as attitudes and behaviours. Physical and psychological characteristics of people with Down syndrome and facilities were also frequently mentioned as barriers. On the other hand, the desire to stay active and personal interest in the activity were among the most frequently reported facilitators. INTERPRETATION: The participation of people with Down syndrome is mainly influenced by physical or psychological factors, the support and attitudes of parents/caregivers, and the availability of specialized programmes. Given the scarcity of research investigating the participation of people with Down syndrome in community activities, daily activities, and leisure, especially in adults, more studies are still needed.

Autism Spectrum Disorder in Down Syndrome: Experiences from Caregivers.

This study aimed to learn about the experiences of families of individuals with a dual diagnosis of Down syndrome (DS) and autism spectrum disorder (ASD) (DS-ASD), and to document the journey from early concerns to diagnosis and intervention. Caregivers completed an online survey describing their journey raising a child with DS-ASD. Survey responses were analyzed qualitatively and coded into categories to highlight common themes. Stereotypy, severe communication impairments, and behavioral difficulties prompted caregivers to pursue further evaluation. There was a mean 4.65-year gap between first noticing symptoms and receiving an ASD diagnosis. Several therapeutic interventions were identified as beneficial, including behavioral and communication support. Caregivers expressed frustration and described high levels of stress and social isolation. The diagnosis of ASD in children with DS is often delayed, and caregivers' initial concerns are frequently dismissed. Raising a child with DS-ASD can lead to social isolation and elevated caregiver stress. More research is needed to tailor diagnostic algorithms and therapeutic interventions to the unique needs of this patient population. Caregivers yearn for improved understanding of DS-ASD, more targeted therapies and educational programs, and more overall support.

Social abilities in young Mexicans with Down syndrome during the COVID-19 pandemic.

Background: Social abilities include interpersonal skills, interaction, and social responsibility. The nature of these abilities has not been explored in young people with Down syndrome (DS) during the social isolation of the COVID-19 pandemic. Method: The aim of this online study was to describe the social profile of a group of 30 Mexican people with DS, with a chronological age of 15-29 years, and explore the variables related to their psychosocial profiles. A sociodemographic questionnaire, mental age examination, and socialization battery were applied. Social behavior was analyzed in domains that facilitate socialization (leadership, joviality, social sensitivity, respect/self-control), in domains that disrupt socialization (aggressiveness/stubbornness, apathy/withdrawal, anxiety/shyness), and on a global scale. Results: Participants' scores in the facilitative domains were above average, and their scores in the disruptive domains were below average, as expected. Scores on the respect/self-control scale were associated with chronological age (CA), and those on the global scale with mental age (MA). Discussion: No impairments were found in the social skills of young people with DS according to the parameters of the scale. The development of the social profile with CA and MA stimulates cognition and promotes independence, autonomy, and proactivity. Parents' role in regulating children's behavior was an important factor in managing their social isolation during the COVID-19 pandemic.

Views of educators working with pupils with Down syndrome on their roles and responsibilities and factors related to successful inclusion.

BACKGROUND: Whilst the majority of primary-school aged children with Down syndrome are educated in mainstream schools, little is known about the roles of Teachers and TAs in their education provision or their views on issues related to their effective inclusion. AIMS: This study explored the perceptions of Teachers and TAs working with pupils with Down syndrome in mainstream primary schools in the UK using an online survey. METHODS AND PROCEDURES: Responses from 105 TAs and 94 Teachers were collected. OUTCOMES AND RESULTS: Teachers and TAs tended to view themselves as primarily responsible for a range of teaching and learning activities. TAs were more likely to have attended Down syndrome specific training and were frequently viewed as primarily responsible for delivering teaching, alongside other teaching and learning activities. TAs were less likely than Teachers to agree with statements relating to satisfaction with support from internal teaching staff and external agencies, and more likely to disagree with statements relating to sufficient time for planning and preparation. Both Teachers and TAs indicated positive attitudes to inclusion, though TAs felt more confident and competent in meeting the needs of pupils with Down syndrome. CONCLUSIONS AND IMPLICATIONS: Data suggest a lack of clarity and consistency in relation to the roles and responsibilities of Teachers and TAs supporting pupils with Down syndrome, and concerns relating to several factors associated with successful inclusion. These findings are discussed in relation to the Down Syndrome Act (2022) and guidance for educators working with pupils with Down syndrome. WHAT THIS PAPER ADDS: This paper reports the views of teachers and TAs working with pupils with Down syndrome in primary schools across the UK, including their satisfaction with factors which support successful inclusion, gathered through an online survey. The data demonstrates differences in teacher and TA views on who is primarily responsible for teaching and learning activities for pupils with Down syndrome. Factors associated with successful inclusion cover training and support, planning and preparation as well as attitudes, confidence and competence of educators. In general, educators reported the need for Down syndrome specific training and sufficient time to plan and prepare. Overall TAs reported higher levels of confidence, competence and ability to meet pupil's needs. Ultimately this paper highlights the views of those responsible for educating pupils with Down syndrome and the need for clear guidance around roles and responsibilities and training to ensure successful inclusion of pupils with Down syndrome in the UK.

The activity levels and quality of life of physically disabled children who continued or did not continue rehabilitation during the COVID-19 pandemic.

BACKGROUND: Social isolation during the COVID-19 pandemic had a harmful impact on the psychological and physical health of children and teenagers. It is known that interruptions in rehabilitation can cause soft tissue contractures, bone deformities and a decline in motor functions among other complications. OBJECTIVE: The aim of this study was to compare the quality of life and physical activity levels of physically disabled children who continued and did not continue rehabilitation during the COVID-19 pandemic. METHOD: The gross motor levels of 18 children who continued special education and rehabilitation during the COVID-19 pandemic and 18 children who did not continue were determined with the Gross Motor Function Classification System (GMFCS). The International Physical Activity Questionnaire Short Form (IPAQ) and Children's Quality of Life Scale (PedsQL) questionnaires were administered. RESULTS: The study participants comprised 54.1% females and 45.9% males with a mean age of 9.02 years. No significant differences were detected between the two groups in respect of demographic, clinical and functional characteristics (p > 0.05). The walking parameters of PedsQL (p = 0.02) and IPAQ-SF scores (p = 0.03) were determined to be statistically significantly better in the group that continued rehabilitation. CONCLUSION: The results of this study demonstrated that the quality of life and walking capacity of children who continued rehabilitation during the COVID-19 pandemic were better. Methods should be developed to ensure that rehabilitation is not interrupted during isolation periods of any future pandemic.

Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households.

We report on the health care experiences of individuals with Down syndrome (DS) from families who are primarily Spanish-speaking. Data were collected through three methods: (1) a nationally distributed, 20-item survey, (2) two focus groups with seven family caregivers of individuals with DS who self-identified as living in primarily Spanish speaking households, and (3) 20 interviews with primary care providers (PCPs) who care for patients who are underrepresented minorities. Standard summary statistics were used to analyze the quantitative survey results. Focus group and interview transcripts, as well as an open-ended response question in the survey, were analyzed using qualitative coding methods to identify key themes. Both caregivers and PCPs described how language barriers make giving and receiving quality care difficult. Caregivers additionally described condescending, discriminatory treatment within the medical system and shared feelings of caregiver stress and social isolation. Challenges to care experienced by families of individuals with DS are compounded for Spanish-speaking families, where the ability to build trust with providers and in the health care system may be compromised by cultural and language differences, systemic issues (lack of time or inability to craft more nuanced schedules so that patients with higher needs are offered more time), mistrust, and sometimes, overt racism. Building this trust is critical to improve access to information, care options, and research opportunities, especially for this community that depends on their clinicians and nonprofit groups as trusted messengers. More study is needed to understand how to better reach out to these communities through primary care clinician networks and nonprofit organizations.

Timing of Referrals to a Down Syndrome Parent Group by Race.

The Down Syndrome Association of Central Ohio (DSACO) is a nonprofit organization that supports families, promotes community involvement, and encourages lifetime opportunities for people with Down syndrome. Methods: At DSACO, ongoing efforts for quality improvement included: a Medical Advisory Committee in 2016, the creation of resources groups for Latino families in 2017, for Somali families from 2018 to 2019, and for African American families in fall 2018, presentations at birth hospitals, and close tracking of referrals from hospitals when an infant with Down syndrome is born. In addition, the timing of referrals, either "early" (on the day of birth or the first day after birth) or "late" (2 or more days after birth), were tracked and plotted in p charts. Results: From January 2017 to April 2021, DSACO received 167 referrals; of these, a median of 65% was received "early." When analyzing all referrals to DSACO, no special cause was seen over the time studied. When evaluating the timing of referral to DSACO by race, referrals for 78% of White families were early (105/135 referrals). In comparison, referrals for 9% of minority families were early (3/32 referrals). Conclusions: The timing of DSACO referral differed by race. Outreach efforts did not change referral timing but led to a more diverse DSACO membership. Future study is needed to confirm if there is racial disparity in the timing of referrals to resources nationally and to understand the barriers in referring diverse families to Down syndrome nonprofit organizations.

How to measure ego-resiliency in the face of various life-changing crises: Measurement invariance, convergent and discriminant validity and reliability of the Polish version of the Revised Ego-Resiliency Scale (ER89-R12).

This study examines the generalizability of the latent structure of the Polish version of the Ego-Resiliency Scale (ER89-R12), a brief self-report scale that measures ego-resiliency. We investigated the measurement invariance, validity, and reliability of ER89-R12 among three groups of individuals who were facing various major, long-term, life-changing crises (N = 512): parents of children with Down's syndrome, women with breast cancer, and individuals after divorce. The analysis of the measurement invariance confirmed the two-factor structure of the questionnaire and the high reliability of this measure in those studied groups. A multigroup confirmatory factor analysis provided evidence of configural, metric, scalar, and residual invariance across the three groups. Moreover, the correlation patterns were similar across the groups. Ego-resiliency was strongly and consistently positively correlated with mental health: psychological well-being, perceived social support, self-esteem, and post-traumatic growth, and negatively correlated with perceived stress. The presented results indicate the potential usefulness of the ER89-R12 tool in studies on people experiencing various crises in their lives.

Visual discrimination and inhibitory control deficits in mouse models of Down syndrome: A pilot study using rodent touchscreen technology.

Several non-verbal cognitive and behavioral tests have been developed to assess learning deficits in humans with Down syndrome (DS). Here we used rodent touchscreen paradigms in adult male mice to investigate visual discrimination (VD) learning and inhibitory control in the Dp(16)1/Yey (C57BL/6J genetic background), Ts65Dn (mixed B6 X C3H genetic background) and Ts1Cje (C57BL/6J genetic background) mouse models of DS. Dp(16)1/Yey and Ts1Cje models did not exhibit motivation or learning deficits during early pre-training, however, Ts1Cje mice showed a significant learning delay after the introduction of the incorrect stimulus (late pre-training), suggesting prefrontal cortex defects in this model. Dp(16)1/Yey and Ts1Cje mice display learning deficits in VD but these deficits were more pronounced in the Dp(16)1/Yey model. Both models also exhibited compulsive behavior and abnormal cortical inhibitory control during Extinction compared to WT littermates. Finally, Ts65Dn mice outperformed WT littermates in pre-training stages by initiating a significantly higher number of trials due to their hyperactive behavior. Both Ts65Dn and WT littermates showed poor performance during late pre-training and were not tested in VD. These studies demonstrate significant learning deficits and compulsive behavior in the Ts1Cje and Dp(16)1/Yey mouse models of DS. They also demonstrate that the mouse genetic background (C57BL/6J vs. mixed B6 X C3H) and the absence of hyperactive behavior are key determinants of successful learning in touchscreen behavioral testing. These data will be used to select the mouse model that best mimics cognitive deficits in humans with DS and evaluate the effects of future therapeutic interventions.

O picadeiro, a Educação Física e a inclusão: estratégias pedagógicas para ensino das atividades circenses para crianças com síndrome de down, TEA e TDAH/hiperatividade / The riding arena, Physical Education and inclusion: pedagogical strategies for teaching circus activities for children with Down Syndrome, ASD and ADHD/Hyperactivity / El picadero, Educación Física e inclusión: estrategias pedagógicas para la enseñanza de actividades circenses a niños con Síndrome de Down, TEA y TDAH/Hiperactividad

Este estudo tem como objetivo apresentar quatro estratégias pedagógicas para ensino de atividades circenses para crianças com Síndrome de Down, TEA e TDAH/Hiperatividade, a serem exemplos de propostas pedagógicas que possam ser adaptadas por profissionais de Educação Física, estabelecendo relações entre o Circo, a Educação Física e a inclusão. Estrutura-se como um ensaio acadêmico, apoiando-se na literatura científica para sugestões na elaboração das estratégias pedagógicas. Foram desenvolvidas adaptações visando as potencialidades de cada tarefa, como o uso das cores e comunicação verbal para atenção, texturas, tamanhos, desuso dos sapatos para percepção sensorial, modificações nos materiais, auxílio com as mãos para hipotonia muscular e, por fim, estímulo à interação coletiva para socialização. A partir da análise das atividades propostas sob a ótica da inclusão, percebe-se que é papel do/a profissional de Educação Física integrar e incluir crianças no âmbito circense, levando em conta seus múltiplos benefícios para o desenvolvimento integral.

This study aims to present four pedagogical strategies for teaching circus activities to children with Down Syndrome, Autistic Spectrum Disorder and Attention Deficit/Hyperactivity Disorder, to be examples of proposes for Physical Education teachers, establishing relationships between Circus, Physical Education, and inclusion. It is structured as an academic essay, relying on the scientific literature. In the activities, adaptations were developed aiming at the potential of each task, such as the use of colours and verbal communication for attention, textures, sizes, disuse of shoes for sensory perception, changes in materials, help with the hands for muscle hypotonia and the stimulus to collective interaction for socialization. From the analysis made and the activities proposed from the perspective of inclusion, it is the role of the Physical Education professional to integrate and include children with intellectual disabilities in the circus, considering its multiple benefits for integral development.

Este estudio tiene como objetivo presentar cuatro estrategias pedagógicas para la enseñanza de actividades circenses a niños con Síndrome de Down, Trastorno del Espectro Autista y Trastorno por Déficit de Atención/Hiperactividad, estableciendo relaciones entre Circo, Educación Física e inclusión. Está estructurado como un ensayo académico, apoyándose en la literatura científica para sugerencias en la elaboración de estrategias pedagógicas. En las actividades se desarrollaron adaptaciones apuntando al potencial de cada área, como el uso de colores y comunicación verbal, texturas, tallas, desuso de zapatos, cambios de materiales, ayuda con las manos y, finalmente, estímulo a la interacción colectiva para la socialización. Del análisis realizado y de las actividades propuestas desde la perspectiva de la inclusión, se desprende que es rol del profesional de la Educación Física integrar e incluir a los niños con discapacidad intelectual en el circo, teniendo en cuenta sus múltiples beneficios para el desarrollo integral.

Sleep Problems Before and During the COVID-19 Pandemic in Children with Autism Spectrum Disorder, Down Syndrome, and Typical Development.

Sleep problems are common in children and adolescents, particularly those with Neurodevelopmental Disorders. With the changes in daily habits resulting from the COVID-19 pandemic, we have analyzed sleep characteristics, during social isolation, in Brazilian children and adolescents aged between 4 and 12 years with Autism Spectrum Disorder (N = 267), Down Syndrome (N = 74), and typical development (N = 312). The ASD group presented with worse indicators of sleep habits in the Children's Sleep Habits Questionnaire (CSHQ-BR) and fell asleep later during the pandemic. The entire group started fall asleep and waking up later during the pandemic - as well as waking up more often during the night. These results may contribute to parental guidance and sleep habit-related interventions during and after the COVID-19 pandemic.

Biochemical Discrimination of the Down Syndrome-Related Metabolic and Oxidative/Nitrosative Stress Alterations from the Physiologic Age-Related Changes through the Targeted Metabolomic Analysis of Serum.

Down Syndrome (DS) is a neurodevelopmental disorder that is characterized by an accelerated aging process, frequently associated with the development of Alzheimer's disease (AD). Previous studies evidenced that DS patients have various metabolic anomalies, easily measurable in their serum samples, although values that were found in DS patients were compared with those of age-matched non-DS patients, thus hampering to discriminate the physiologic age-related changes of serum metabolites from those that are truly caused by the pathologic processes associated with DS. In the present study we performed a targeted metabolomic evaluation of serum samples from DS patients without dementia of two age classes (Younger DS Patients, YDSP, aging 20-40 years; Aged DS Patients, ADSP, aging 41-60 years), comparing the results with those that were obtained in two age classes of non-DS patients (Younger non-DS Patients, YnonDSP, aging 30-60 years; Aged-nonDS Patients, AnonDSP, aging 75-90 years). Of the 36 compounds assayed, 30 had significantly different concentrations in Pooled non-DS Patients (PnonDSP), compared to Pooled DS Patients (PDSP). Age categorization revealed that 11/30 compounds were significantly different in AnonDSP, compared to YnonDSP, indicating physiologic, age-related changes of their circulating concentrations. A comparison between YDSP and ADSP showed that 19/30 metabolites had significantly different values from those found in the corresponding classes of non-DS patients, strongly suggesting pathologic, DS-associated alterations of their serum levels. Twelve compounds selectively and specifically discriminated PnonDSP from PDSP, whilst only three discriminated YDSP from ADSP. The results allowed to determine, for the first time and to the best of our knowledge, the true, age-independent alterations of metabolism that are measurable in serum and attributable only to DS. These findings may be of high relevance for better strategies (pharmacological, nutritional) aiming to specifically target the dysmetabolism and decreased antioxidant defenses that are associated with DS.

Ableism at the Bedside: People with Intellectual Disabilities and COVID-19.

People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comorbidities for this population; however, the disparity in mortality persists even when controlling for comorbidities. We review the current policies and practices that may be contributing to this higher level of mortality. We contend that pervasive ableism among medical providers leads to a variation in the medical care options that are provided to people with intellectual disabilities and their families. Due to this bias, poor outcomes for people with intellectual disabilities may become a self-fulfilling prophecy. We make recommendations to address the modifiable factors that are contributing to the higher level of mortality for people with intellectual disabilities who are infected with COVID-19, provide strategies to combat ableism within the medical field, and discuss the unique role of the primary care physician as an advocate.

Modelling quality of life in children with intellectual disability using regression trees.

AIM: To identify factors associated with quality of life (QoL) in children with intellectual disability. We aimed to identify patterns of association not observable in previous hypothesis-driven regression modelling using the same data set from a cross-sectional observational study. METHOD: A questionnaire was completed by 442 caregivers of children with confirmed intellectual disability and a diagnosis of autism spectrum disorder, cerebral palsy, Down syndrome, or Rett syndrome. The Quality of Life Inventory-Disability (QI-Disability) questionnaire was used to assess child QoL. Independent variables described the child's health, functional abilities, community participation, and sociodemographics. The R package rpart was used to build the regression trees. RESULTS: The mean total QI-Disability score was 69.2 out of a maximum 100. The subgroup with the lowest QoL scores comprised children with a high degree of daytime sleepiness (n=74, mean 57.5) while the subgroup with the highest QoL scores (n=91, mean 80.3) comprised children with little daytime sleepiness who participated more frequently in community activities and displayed good eye contact while listening. INTERPRETATION: Regression tree analysis provides insights into the relative importance of associated factors. Sleep problems and community participation were more important than functional abilities in accounting for differences in QoL. WHAT THIS PAPER ADDS: A hypothesis-free regression tree analysis enables examination of multiple factors potentially influencing quality of life (QoL) in children with intellectual disability. Functional abilities were less strongly associated with QoL than sleep problems and community participation.

Estigma, cuidador e criança com síndrome de Down: análise bioética / Stigma, caregivers and the child with Down syndrome: a bioethical analysis / Estigma, cuidador y niño con síndrome de Down: análisis bioético

Resumo Objetivou-se analisar a percepção de pais de crianças com síndrome de Down acerca de estigma social e refletir sobre o tema à luz da bioética. Trata-se de estudo de elaboração e validação de instrumento de medida cujo teste-piloto contou com 106 participantes. Os resultados apontaram que o estigma inferioriza os afetados, acarretando desvantagem social, desemprego, diminuição de recursos financeiros, não aceitação, intolerância, invisibilidade social, menor acesso a serviços de saúde e piora da qualidade de vida. Isso gera efeitos negativos na saúde dos genitores. Concluiu-se que o estigma está presente na sociedade, e por isso faz-se necessário formular políticas públicas que conscientizem os pais e garantam seu direito à saúde. Reconhece-se que apesar de ser mais um elemento de adoecimento, o estigma não deve ser subestimado.

Abstract The aim of this study was to analyze the perception of parents of children with Down syndrome about social stigma and reflect on the theme in the light of bioethics. This study consists of the elaboration and validation of a measurement instrument whose pilot test had 106 participants. Results showed the stigma creates feelings of inferiority on those affected, causing social disadvantage, unemployment, decreased financial resources, non-acceptance, intolerance, social invisibility, less access to health services and worse quality of life. This generates negative effects on the parents' health. It was concluded that stigma is present in society, so public policies that raise awareness among parents and guarantee their right to health are required. Despite being another element of illness, stigma should not be underestimated.

Resumen El objetivo era analizar la percepción de los padres de niños con síndrome de Down sobre el estigma social y reflexionar sobre el tema a la luz de la bioética. Se trata de un estudio de elaboración y validación de un instrumento de medición en cuya prueba piloto contó con 106 participantes. Los resultados señalaron que el estigma inferioriza a los afectados, lo que conlleva desventajas sociales, desempleo, disminución de recursos financieros, no aceptación, intolerancia, invisibilidad social, menor acceso a servicios de la salud y el empeoramiento de la calidad de vida. Esto genera efectos negativos en la salud de los padres. En conclusión el estigma está presente en la sociedad, por lo que es necesario formular políticas públicas que concienticen a los padres y garanticen su derecho a la salud. Hay que reconocer que a pesar de ser un elemento más de enfermedad, el estigma no debe subestimarse.

Modifiable child and caregiver factors that influence community participation among children with Down syndrome.

PURPOSE: To investigate modifiable child and caregiver factors influencing community participation among children with Down syndrome. METHODS: Cross-sectional data from a study investigating quality of life of children with intellectual disability were analysed. Participants were caregivers of 89 children with Down syndrome (54 females; 83 school attenders) (mean age 11 y 1 mo; SD 4 y 1 mo). Components of participation (attendance, involvement) were measured using the Participation and Environment Measure for Children and Youth, community module. Caregiver factors were time, mood, transport, and disability funding. Child factors were sleep, behaviour, communication, and health. Multivariate linear regression analyses examined if (i) caregiver factors were associated with attendance and (ii) child factors were associated with involvement. RESULTS: Increased caregiver time availability was associated with higher frequency of attendance. Higher frequency of attendance was associated with greater child involvement, and having a sleep breathing disorder and less verbal communication ability was associated with less child involvement. These factors combined explained 21% of the variance. CONCLUSIONS: Children with Down syndrome who participated in the community more frequently enjoyed greater involvement. Supporting participation of children with poorer verbal communication and/or sleep breathing disorders could further the participation of children with Down syndrome.Implications for rehabilitationChildren with Down syndrome who more frequently attended opportunities for participation were more likely to be involved in those experiences.Healthcare providers and educators could foster involvement in participation opportunities of children with poorer verbal ability by supporting the development of prerequisite communication strategies.Rehabilitation programs and policies pertaining to accessibility of community activities need to align with modifiable determinants of participation in children, including availability of caregivers' time.

Adapted remote cognitive behavioural therapy for comfort eating with a woman with intellectual disabilities: Case report.

BACKGROUND: Diagnostic overshadowing can prevent the treatment of comfort eating in people with intellectual disabilities, and the published literature contains few therapeutic examples. This case study reports a relatively novel, promising, and accessible, remote cognitive behavioural intervention. CASE PRESENTATION: This case study documents a therapeutic intervention for comfort eating with a client, Sarah, in a National Health Service adult Community Learning Disabilities Service. Sarah is a white, British woman in her late thirties, with a diagnosis of Down syndrome who experienced significant problems with comfort eating and subsequent weight management. Despite dieting and exercising, Sarah was clinically obese and experienced weight related pain and psychological distress. Systemic intervention between Sarah, her mother, and the therapist formulated Sarah's eating difficulties using a cognitive behavioural framework. This hypothesised how comfort-eating met her emotional needs and maintained her health difficulties. Remote cognitive behavioural therapy interventions included collaborative behavioural experiments, coping strategies, and homework tasks. CONCLUSIONS: The Maslow Assessment of Needs Scale-Learning Disabilities, Glasgow Depression Scale for people with a Learning Disability, Glasgow Anxiety Scale for people with an Intellectual Disability, qualitative feedback from family, as well as frequency data showed significant improvement. Additionally, the case considers the evidence base, assessment, formulation and intervention, before reflecting on its various strengths and limitations. It reflects on the intersectionality of sexuality and intellectual disabilities, and the desire for romantic attachment, which was additionally complicated by the context of coronavirus and social isolation. The environmental influences on comfort eating regarding this case, and in general, the experiences of people with intellectual disabilities are also considered. The potential clinical impact of this case study includes exemplifying an effective comfort eating therapeutic intervention in an often overlooked client group.

The effects of inclusion on academic achievement, socioemotional development and wellbeing of children with special educational needs.

Background: Considering the rapid global movement towards inclusion for students with special educational needs (SEN), there is a surprising lack of pedagogical or didactic theories regarding the ways in which inclusive education may affect students with SEN. Group composition within the educational setting may play a role in determining the academic achievement, socio-emotional development, and wellbeing of students with SEN. Proponents of inclusion propose that segregated educational placement causes stigmatisation and social isolation which may have detrimental effects on the self-concept and self-confidence of students with SEN. On the other hand, opponents of inclusion for all special needs students suggest that placement in general education classrooms may have adverse effects especially if the time and resources allocated for individualisation are not aligned with student needs. Since the 1980s, a number of reviews on the effects of inclusion have been published. Results are inconsistent, and several reviews point to a number of methodological challenges and weaknesses of the study designs within primary studies. In sum, the impact of inclusion on students with SEN may be hypothesised to be both positive and negative, and the current knowledge base is inconsistent. Objectives: The objective was first: To uncover and synthesise data from contemporary studies to assess the effects of inclusion on measures of academic achievement, socio-emotional development, and wellbeing of children with special needs when compared to children with special needs who receive special education in a segregated setting.A secondary objective was to explore how potential moderators (gender, age, type and severity of special need, part or full time inclusive education, and co-teaching) relate to outcomes. Search Methods: Relevant studies were identified through electronic searches in Academic Search Premier (EBSCO), APA PsycINFO (EBSCO), EconLit (EBSCO), ERIC (EBSCO), International Bibliography of the Social Sciences (ProQuest), Sociological Abstracts (ProQuest), Science Citation Index Expanded (Web Of Science), Social Sciences Citation Index (Web Of Science), and SocINDEX (EBSCO). The database searches were completed on 24 April 2021 and other resources: grey literature repositories, hand search in targeted journals and Internet search engines were searched in August/September 2021. The search was limited to studies reported after 2000. Selection Criteria: The review included studies of children with special needs in grades K to 12 in the OECD countries. Children with all types of verifiable SEN were eligible. Inclusion refers to an educational setting with a mixture of children with and without SEN. Segregation refers to the separate education of children with SEN. All studies that compared inclusive versus segregated educational settings for children with SEN were eligible. Qualitative studies were not included. Data Collection and Analysis: The total number of potentially relevant studies constituted 20,183 hits. A total of 94 studies met the inclusion criteria, all were non-randomised studies. The 94 studies analysed data from 19 different countries. Only 15 studies could be used in the data synthesis. Seventy-nine studies could not be used in the data synthesis as they were judged to be of critical risk of bias and, in accordance with the protocol, were excluded from the meta-analysis on the basis that they would be more likely to mislead than inform. The 15 studies came from nine different countries. Separate meta-analyses were conducted on conceptually distinct outcomes. All analyses were inverse variance weighted using random effects statistical models. Sensitivity analyses were performed to evaluate the robustness of pooled effect sizes across components of risk of bias. Main Results: The average baseline year of the interventions analysed in the 15 studies used for meta-analysis was 2006, ranging from 1998 to 2012. The average number of participants analysed in the interventions was 151, ranging from 10 to 1357, and the average number of controls was 261, ranging from 5 to 2752. The studies included children with multiple types of disabilities such as learning disorders/intellectual disabilities, autism spectrum disorders, ADHD, physical handicaps, visual impairments, and Down syndrome. At most, the results from eight studies could be pooled in any of the meta-analyses. All the meta-analyses showed a weighted average that favoured the intervention group. None of them were statistically significant. The random effects weighted standardised mean difference was 0.20 (95% confidence interval [CI]: -0.01 to 0.42) for overall psychosocial adjustment; 0.04 (95% CI: -0.27 to 0.35) for language and literacy learning outcomes, and 0.05 (95% CI: -0.16 to 0.26) for math learning outcomes. There were no appreciable changes in the results as indicated by the sensitivity analyses. There was some inconsistency in the direction and magnitude of the effect sizes between the primary studies in all analyses and a moderate amount of heterogeneity. We attempted to investigate the heterogeneity by single factor sub-group analyses, but results were inconclusive. Authors' Conclusions: The overall methodological quality of the included studies was low, and no experimental studies in which children were randomly assigned to intervention and control conditions were found. The 15 studies, which could be used in the data synthesis, were all, except for one, judged to be in serious risk of bias. Results of the meta-analyses do not suggest on average any sizeable positive or negative effects of inclusion on children's academic achievement as measured by language, literacy, and math outcomes or on the overall psychosocial adjustment of children. The average point estimates favoured inclusion, though small and not statistically significant, heterogeneity was present in all analyses, and there was inconsistency in direction and magnitude of the effect sizes. This finding is similar to the results of previous meta-analyses, which include studies published before 2000, and thus although the number of studies in the current meta-analyses is limited, it can be concluded that it is very unlikely that inclusion in general increases or decreases learning and psychosocial adjustment in children with special needs. Future research should explore the effects of different kinds of inclusive education for children with different kinds of special needs, to expand the knowledge base on what works for whom.

Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage.

Courtesy stigma, which arises from close connections to people with stigmatized characteristics, negatively affects interpersonal relations. This study aimed to evaluate courtesy stigma and the adaptation process of parents of children with Down syndrome based on semi-structured interviews with 23 Japanese parents. The interview themes were (a) negatively perceived interpersonal experiences and coping strategies; (b) information disclosure and others' responses; and (c) positively perceived interpersonal experiences. The interview data were transcribed and analyzed based on a grounded theory approach. The results suggested that parents perceived and experienced multidimensional courtesy stigma, and they used various coping strategies categorized in combinations of passive-active and internal-external. All parents disclosed information about their child's diagnosis to others, and reverse disclosure (i.e., revealing own relations with people with disabilities) was characteristically observed thereafter. Through active interaction and reflection, the parents cultivated social relationships, compassion, world views, and community involvement, which led to the transcendent stage. However, internal conflict as a mediator between people with and without Down syndrome re-emerged even after achieving the transcendent stage. These findings could help to develop interventions in genetic counseling for parents to deal with interpersonal relationship difficulties.