The effect of a training program on family stress and life satisfaction: A randomized controlled study of mothers of children with disabilities.

OBJECTIVE: This randomized controlled study focused on mothers of children with disabilities to determine the effect of a training program on family stress and life satisfaction. METHOD: The sample consisted of 52 mothers of children with disabilities (intervention group = 26 and control group = 26). The intervention group participated in a five-session training program on coping mechanisms and life satisfaction. Data were collected using the Questionnaire On Resource And Stress (QRS-FT) and the Satisfaction with Life Scale (SWLS). RESULTS: After the intervention, the mean life satisfaction scores of the intervention group participants increased (p < 0.05), while their mean total score of family stress decreased (p > 0.05). In the control group, the mean life satisfaction scores decreased (p > 0.05), while the mean total score of family stress increased (p < 0.05). CONCLUSION: The intervention helped mothers of children with disabilities experience more satisfaction with life and less family stress. Authorities should consider the outcomes of educational intervention studies and formulate training programs for mothers of children with disabilities. PRACTICAL IMPLICATIONS: Nurses can use interactive educational programs as nursing interventions to help mothers of children with disabilities experience less family stress and more life satisfaction.

Implementation of the My Abilities First Tool: A qualitative study on the perceptions of professionals, caregivers, children, and adolescents with disabilities.

OBJECTIVE: To analyze the perceptions of professionals, caregivers, children, and adolescents with disabilities regarding the implementation of the My Abilities First (MAF) tool in Specialized Child Rehabilitation Centers (CERs). METHOD: This is a qualitative research based on Reflexive Thematic Analysis (RTA). The study involved twenty-seven intentionally selected individuals, comprising 12 physiotherapists, 4 occupational therapists, 11 caregivers, 9 children and 2 adolescents. Participants completed sociodemographic and clinical questionnaires and took part in semi-structured online interviews, focusing on two themes: Positive health approaches and the MAF tool. The study was approved by the local ethics committee (opinion 4.779.175). RESULTS: Reflexive Thematic Analysis of the interviews resulted in two themes: (1) Perceptions regarding the MAF tool as an educational and contributory process to enhance the inclusion and participation of children and adolescents with disabilities, and (2) Barriers and facilitators for the implementation process of the MAF tool. The implementation of MAF was identified as a driving factor in promoting equity and increased participation of children and adolescents with disabilities in various settings, including health, education, and leisure. Interviewees highlighted the need to confront attitudinal, communication, and social barriers that may hinder the implementation of the tool. CONCLUSION: The implementation of the MAF tool was perceived as an innovation due to its focus on the abilities of individuals with disabilities. However, there is a need to restructure it to broaden its scope and access to different contexts in order to confront barriers and enhance the inclusion and participation of children and adolescents with disabilities.

Perceptions and behaviors of healthcare providers towards rehabilitation support to children with severe malaria-related disability in Ethiopia: A qualitative descriptive study using the Theoretical Domains Framework.

INTRODUCTION: Severe malaria often results in childhood disability. The prevalence of disability related to severe malaria is significant and is estimated to affect up to 53% of severe malaria survivors. In contrast, information is sparse about how healthcare providers in Africa think about or provide rehabilitation support in acute and post-acute phases respectively. Understanding the perceptions and behaviors of healthcare providers treating malaria could help inform malaria-related disability research, policy, and practice, aimed at the providers themselves. This study explored the perceptions and behaviors of healthcare providers towards rehabilitation for children with severe malaria-related disability. The Theoretical Domains Framework was used to describe the findings relative to wider literature on health provider behavior change. METHODS: A qualitative descriptive approach was used to interview thirteen healthcare providers recruited purposively based on their clinical professions, roles, and settings. Data were analyzed using directed content analysis. We decided on the most prominent theoretical domains considering the frequency of specific perceptions and behaviors across the participants, the frequency of perceptions and behaviors in each domain, and evidence of strong perceptions and behaviors. RESULTS: Nine out of fourteen theoretical domains were identified. These domains were: Beliefs about consequences, environmental context and resources, goals, knowledge, skills, optimism, reinforcement, social influences, and social or professional role and identity. Healthcare providers' beliefs about their roles in screening for disability or referring to rehabilitation were less positive. CONCLUSIONS: The findings of this study suggest the need for interventions to support healthcare providers in acute phases (prevention and control of severe malaria) and post-acute phases (disability screening, referral, and rehabilitation care). Recommended interventions should focus on developing clinical guidelines, training clinicians, addressing institutional factors, and modifying external social influences such as socio-cultural factors.

Family-centered service through the eyes of insiders: Healthcare providers who are parents speak about receiving and providing healthcare in child health.

BACKGROUND: When healthcare providers (HCPs) become patients, the experience affects their sense of identity, the care they receive, and their clinical practice. In child health, considerably less is known about the experiences of HCP-parents who access the pediatric healthcare system with their own children with disabilities and/or chronic medical conditions. AIMS: This study aimed to examine the experiences of HCPs who have children with disabilities to identify their experiences with healthcare delivery. METHODS AND PROCEDURES: A qualitative descriptive study was conducted with HCP-parents, using focus groups and open-ended interviews. Data were analyzed using reflexive thematic analysis. RESULTS: For HCP-parents, the experience of having a child with a disability affects how they see themselves, their patients, service organizations, and the healthcare system in general. Having medical knowledge and access to networks brings both benefits and unique challenges. HCP-parents also have unique needs that are not currently being addressed. The lived experiences of HCP-parents can contribute to improving patient care. However, the value of this lived experience is unrecognized and underutilized. CONCLUSIONS: The lived experiences of HCP-parents can contribute important insights regarding service delivery, and in particular regarding the application of Family-Centered Service.

A Scoping Review of Pediatric Healthcare Built Environment Experiences and Preferences Among Children With Disabilities and Their Families.

BACKGROUND: Some children with disabilities (CWD) frequently visit pediatric healthcare settings for appointments. Their age, disability, and regular visits mean that they have unique experiences in healthcare settings. While previous research has explored the clinical experiences of CWD, little is known about their experiences of pediatric healthcare built environments, even though these environments may play an important role in shaping their perceptions of care. Given the significant time that some CWD and chronic illnesses (e.g., cancer) spend in healthcare environments and the impact that these settings can have on their experiences, the knowledge gap concerning how they view, and experience healthcare built environments demands attention. OBJECTIVE: To explore how CWD and their families experience pediatric healthcare built environments. METHODS: A scoping review was conducted by searching five health science and interdisciplinary literature databases using terms related to children, disability, healthcare, and built environment. The search identified 5,397 records that were screened independently by three reviewers. RESULTS: Nineteen studies met inclusion criteria and were considered in the final review. Findings indicate that CWD and their families value healthcare built environment features that support social engagement, patient privacy, and parental presence. Further, the age of a child was highlighted as an important factor that influences the built environment preferences of CWD. CONCLUSIONS: CWD and their families prefer certain healthcare built environment features to optimize their experiences in these settings. Healthcare designers can leverage these findings to advance more inclusive pediatric healthcare spaces to improve care and the quality of life for CWD and their families.

Perspectives of Swiss Paediatric Health Care Professionals on Factors Influencing Physical Activity Participation in Children with Disabilities.

AIM: Investigation of the perspectives of paediatric health care professionals (PHCPs) in Switzerland regarding factors that influence participation in physical activity programs for children and adolescents with disabilities or chronic conditions (CADCCs). Evaluation of self-reported exercise counselling behavior of those professionals. METHOD: A cross-sectional survey was used to collect the opinions of 171 PHCPs working with CADCCs using a structured questionnaire. The information obtained was evaluated by performing a combined quantitative and qualitative statistical analysis. RESULTS: PHCPs in Switzerland think that CADCC do not get enough physical activity and see the underlying reasons in lacking information/knowledge and organizational factors. We found that the level of knowledge about disability sports opportunities among PHCPs has a positive influence on their exercise counselling behaviour. CONCLUSIONS: We propose three approaches to increase the level of physical activity in CADCC: Establishing personalized exercise counseling, intensifying information about disability sports programmes towards PHCPs, and improving inclusion and integration in PE lessons or regular sports clubs.

Evaluating Medicaid Managed Care Network Adequacy Standards And Associations With Specialty Care Access For Children.

Medicaid managed care plans cover more than 80 percent of Medicaid-enrolled children, including many children with special health care needs (CSHCN). Federal rules require states to set network adequacy standards to improve specialty care access for Medicaid managed care enrollees. Using a quasi-experimental design and 2016-19 National Survey of Children's Health data, we examined the association between quantitative network adequacy standards and access to specialty care among 8,614 Medicaid-enrolled children, including 3,157 with special health care needs, in eighteen states. Outcomes included whether the child had any visit to non-mental health specialists, any visit to mental health professionals, or any unmet health care needs and whether the caregiver ever felt frustrated in getting services for the child in the past year. We observed no association between the adoption of any quantitative network adequacy standard and the above outcomes among Medicaid-enrolled children. Among CSHCN, however, adopting any quantitative standard was positively associated with caregivers feeling frustrated in getting services for the child, especially among CSHCN who visited non-mental health specialists. Without additional interventions, adopting new network adequacy standards may have unintended consequences for CSHCN.

"Kind of empowered": Perceptions of socio-emotional development in children driving ride-on cars.

PURPOSE/OBJECTIVE: Early powered mobility (PM) experiences can be essential facilitators of self-initiated mobility, socialization, and exploration for young children with disabilities. Cerebral palsy (CP) and developmental delay are two of the most common diagnoses associated with motor disability in young children with 1 in 345 children diagnosed with CP and 1 in 6 with developmental delay in the US. The purpose of this study was to explore the longitudinal experiences and caregiver perceptions of socio-emotional development in particular, in young children with disabilities during modified ride-on car (ROC) use. RESEARCH METHOD/DESIGN: A qualitative, grounded theory approach was used. Semi-structured interviews were conducted with 15 families (children ages 1-4 with CP or developmental delay) at baseline, 6 months (as able due to COVID), and 1 year following ROC introduction. Data were coded independently by three researchers using constant comparison until data saturation occurred and themes emerged. RESULTS: Four themes emerged from the data: "Leveling the Playing Field," "Breaking Down Barriers," "Fun and Work: ROC as Toy and Therapy Device," and "Mobility is a Pathway to Autonomy." Conclusions/Implication: Children and caregivers viewed ROCs as both fun and therapeutic, consistently identifying perceived benefits for children's socio-emotional development. This qualitative study provides a better understanding of the complexities and impact of ROCs on children and their families in the socio-emotional domain and may help facilitate clinical decision-making when introducing PM to young children with disabilities as part of a multimodal approach to early intervention. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Meaningful outcomes for children and their caregivers attending a paediatric brain centre.

AIM: To identify meaningful outcomes of children and their caregivers attending a paediatric brain centre. METHOD: We compiled a long list of outcomes of health and functioning of children with brain-related disorders such as cerebral palsy, spina bifida, (genetic) neurodevelopmental disorders, and acquired brain injury. We incorporated three perspectives: patients, health care professionals, and published outcome sets. An aggregated list was categorized using the International Classification of Functioning, Disability, and Health: Children and Youth version in a patient validation survey for children and parent-caregivers to prioritize outcomes. Outcomes were considered meaningful when ranked 'very important' by 70% or more of the participants. RESULTS: We identified 104 outcomes from the three perspectives. After categorizing, 59 outcomes were included in the survey. Thirty-three surveys were completed by children (n = 4), caregivers (n = 24), and parent-caregivers together with their child (n = 5). Respondents prioritized 27 meaningful outcomes covering various aspects of health and functioning: emotional well-being, quality of life, mental and sensory functions, pain, physical health, and activities (communication, mobility, self-care, interpersonal relationships). Parent-caregiver concerns and environmental factors were newly identified outcomes. INTERPRETATION: Children and parent-caregivers identified meaningful outcomes covering various aspects of health and functioning, including caregiver concerns and environmental factors. We propose including those in future outcome sets for children with neurodisability. WHAT THIS PAPER ADDS: Outcomes that children with brain-related disorders and their parent-caregivers consider to be the most meaningful cover a wide range of aspects of functioning. Involving these children and their parent-caregivers resulted in the identification of important outcomes that were not covered by professionals and the literature. Parent-caregiver-related factors (coping, burden of care) and environmental factors (support, attitudes, and [health care] services) were identified as meaningful.

Deaf and hearing children: A comparison of face perception.

Deaf and hearing adults perceive faces differently. This study investigates whether these differences are acquired during childhood development. We characterized facial perception in deaf and hearing children aged 7-17 using a perceptual discrimination task. Configural and featural information was manipulated in the eye and mouth facial regions. Participants were asked whether two faces presented simultaneously were different. Deaf and hearing children performed better in featural than configural discriminations and in mouth than eye discriminations. Compared with children with typical hearing, deaf children performed better in featural and mouth judgments but had longer reaction times with strongest effects at 7-8 and 13-14 years old. Type and location contributed jointly in deaf children's face perception with different configural but similar featural discriminations in mouth and eye locations. However, children with typical hearing showed different featural and configural judgments in both locations. Thus, featural and configural information effects on location processing differ between the two groups.

Estigma de cortesia e condições de saúde: revisão sistemática de literatura / Estigma de cortesía y condiciones de salud: revisión sistemática de la literatura / Courtesy stigma and health conditions: systematic literature review

RESUMO A literatura científica aponta consistentemente que grupos historicamente alvos de estigma social experimentam efeitos deletérios, em diversas esferas da vida. A despeito da sua gravidade e pervasividade, ainda existem lacunas na investigação do tema, tais como aquela voltada para o Estigma de Cortesia, que é vivenciado por pessoas que possuem vínculos afetivos ou profissionais com o indivíduo estigmatizado. O presente artigo teve como objetivo apresentar o estado da arte sobre estigma de cortesia, por meio de uma revisão sistemática de estudos empíricos originais publicados em periódicos revisados por pares e indexados nas principais bases relacionadas ao campo de investigação (PsycNET (APA), Pubmed, Bvs Brasil, Periódicos CAPES, SciELO e Pepsic). Como palavras-chave, para a busca dos resumos, utilizou-se: estigma de cortesia, estigma de afiliação e estigma de associação. Ao todo, 94 textos completos atenderam aos critérios de inclusão e exclusão. Os estudos apontaram que o estigma de cortesia tem sido investigado predominantemente entre familiares de pessoas que possuem algum tipo de problema relacionado com sua saúde mental, além de pais de crianças com algum tipo de deficiência.

RESUMEN La literatura científica señala constantemente que los grupos históricamente afectados por el estigma social experimentan efectos nocivos en diferentes ámbitos de la vida. A pesar de su gravedad y omnipresencia, todavía hay vacíos en la investigación del tema, como el centrado en el estigma de cortesía, que experimentan las personas que tienen vínculos afectivos o profesionales con el individuo estigmatizado. Este artículo tuvo como objetivo presentar el estado del arte sobre el estigma de cortesía a través de una revisión sistemática de estudios empíricos originales publicados en revistas revisadas por pares e indexados en las principales bases de datos relacionadas con el campo de investigación (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO y revistas Pepsic). Como palabras clave para la búsqueda de resúmenes, utilizamos: estigma de cortesía, estigma de afiliación y estigma de asociación. En total, 94 textos completos cumplieron con los criterios de inclusión y exclusión. Los estudios han demostrado que el estigma de cortesía se ha investigado principalmente entre miembros de la familia de personas que tienen algún tipo de problema relacionado con su salud mental, además de los padres de niños con algún tipo de discapacidad.

ABSTRACT The scientific literature consistently points out that groups historically targeted by social stigma experience deleterious effects in different spheres of life. Despite its gravity and pervasiveness, there are still gaps in the investigation of the topic, such as that focused on the Courtesy Stigma, which is experienced by people who have affective or professional ties with the stigmatized individual. This article aimed to present the state of the art on Courtesy Stigma through a systematic review of original empirical studies published in peer-reviewed journals and indexed in the main databases related to the research field (PsycNET (APA), Pubmed, Bvs Brasil, CAPES, SciELO, and Pepsic journals). As keywords for the search for abstracts, we used: courtesy stigma, affiliate stigma and associative stigma. Altogether, 94 complete texts met the inclusion and exclusion criteria. Studies have shown that the Courtesy Stigma has been investigated predominantly among family members of people who have some type of problem related to their mental health, in addition to parents of children with some type of disability.

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.

Photovoice Lessons from a Peruvian Program in Combatting Stigma for Caregivers of Children with Disabilities.

BACKGROUND: Access to resources for children with disabilities and their caregivers are lacking worldwide, especially for low-and middle-income countries, especially those of Latin origin. Furthermore, decreased social visibility coupled with minimal support available for caregivers can negatively affect their overall mental well-being. Limited community-based participatory research has been done to understand the experiences of caregivers and identify effective measures of support. OBJECTIVES: To explore the impact of childhood disabilities on caregiver well-being and to assess how interactions between caregivers and their community affect their mental well-being. METHODS: This study used photovoice and community-based participatory research methodology. We recruited participants who had children enrolled in a rehabilitative program called Rehabilitation with Hope, located in Huancayo, Peru. Participants were given three photo assignments concerning their experiences as caregivers and they presented their photos at photo discussions after each assignment. We used thematic analysis to identify the main themes that arose from the discussions. RESULTS: Four main themes were identified: stigma, social support, self-esteem, and effects of photovoice. Caregivers often felt stigmatized by the community due to their child's disability. However, they found a stronger sense of social support and overall improved sense of self-esteem through the program and participation in photovoice. CONCLUSIONS: The results of this study suggest the effects of stigma on caregivers may be mitigated through enhanced social support and self-esteem. Additionally, photovoice is an effective tool to combat community stigma by allowing caregivers to share their narratives.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study.

OBJECTIVE: To describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in Germany. DESIGN: This is the second of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤18 years since the onset of the COVID-19 pandemic, administrated between 2 April 2021 and 31 July 2021. MAIN OUTCOME MEASURES: Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire and WHO-5 Well-being index. Children with Special Healthcare Needs (CSHCN) were identified using the CSHCN-Screener. Descriptive statistics, linear and hierarchical logistic regression modelling assessed associations between parent-reported child mental health problems and measures of pandemic burden, disease complexity, caregiver mental well-being and socioeconomic status. RESULTS: 521 participants were included in the final sample. There was a high prevalence of parent-reported mental health problems in n=302 (66.7%) children, particularly in CSHCN. Among caregivers, n=372 (72.5%) screened positive for depression. Logistic regression modelling showed a strong association of child mental health problems and disease complexity, parental mental well-being, increase in family conflict and inadequate social support. CONCLUSIONS: Our study identifies CSHCN as a particularly vulnerable group in terms of mental health outcomes. Psychosocial factors were important predictors of parent-reported child mental health problems. Policy measures should consider the importance of social support systems for vulnerable children and their families, and aim to provide accessible mental health support for caregivers.

A Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families.

Children and youth with special health care needs (CYSHCN) and their families continue to face challenges in accessing health care and other services in an integrated, family-centered, evidence-informed, culturally responsive system. More than 12 million, or almost 86%, of CYSHCN ages 1-17 years do not have access to a well-functioning system of services. Further, the inequities experienced by CYSHCN and their families, particularly those in under-resourced communities, highlight the critical need to address social determinants of health and our nation's approach to delivering health care. To advance the system and prioritize well-being and optimal health for CYSHCN, the Health Resources and Services Administration's Maternal and Child Health Bureau, with input from diverse stakeholders, developed a set of core principles and actionable strategies for the field. This article presents principles and strategies in the Blueprint for Change: Guiding Principles for a System of Services for CYSHCN and Their Families (Blueprint for Change), which acknowledges the comprehensive needs of CYSHCN, a changing health care system, and the disparities experienced by many CYSHCN. Four critical areas drive the Blueprint for Change: health equity, family and child well-being and quality of life, access to services, and financing of services. Although discussed separately, these critical areas are inherently interconnected and intend to move the field forward at the community, state, and federal levels. Addressing these critical areas requires a concerted, holistic, and integrated approach that will help us achieve the goal that CYSHCN enjoy a full life from childhood through adulthood and thrive in a system that supports their families and their social, health, and emotional needs, ensuring their dignity, autonomy, independence, and active participation in their communities.

Representação social sobre a surdez: uma revisão integrativa / Social representation on deafness: an integrative review / Representación social sobre la sordera: una revisíon integradora

O presente estudo teve como objetivo realizar uma revisão integrativa da lite-ratura referente aos estudos científicos que envolvessem a representação social e a surdez. Para isso, realizou-se uma busca nas bases de dados SciELO.org, PePSIC, LILACS, PsycINFO (APA) e Scopus (Elsevier), por meio da plataforma Periódicos CAPES no mês de setembro do ano 2020. Os descritores foram: representação social, surdez, surdo e deficiente auditivo, na língua portuguesa, inglesa e espanhola. Foram analisados 11 artigos e com resultados acerca das populações surda e ouvinte. Nos artigos com pessoas surdas observam--se temáticas sobre identidade, cultura e direitos enquanto cidadãos para dirimirem e modificarem os estereótipos acerca da surdez. As pesquisas com os ouvintes foram realizadas com os familiares e a sociedade de modo geral, tendo como destaque representações baseadas em estereótipos negativos e aspectos limitantes. Ademais, sugerem-se novas produções cientificas que deem continuidade à teoria das representações sociais associadas com outros aspectos que envolvam a surdez e tenham como amostra, a comunidade surda.

The present study aimed to carry out an integrative review of the literature regarding scientific studies involving social representation and deafness. For this, a search was carried out in the databases SciELO.org, PePSIC, LILACS, PsycINFO (APA) and Scopus (Elsevier), through the platform Periodicals CAPES, in September 2020. The descriptors were: representation social, deaf, deaf and hearing impaired, in Portuguese, English and Spanish. Eleven articles were analyzed with abouth the deaf, and hearing populations. In the articles with deaf people, themes about identity, culture and rights as citizens are observed to resolve and modify stereotypes about deafness. Surveys with listeners were carried out with family members and society in general, highli-ghting representations based on negative stereotypes and limiting aspects. Furthermore, new scientific productions are suggested that give continuity to the theory of social representations associated with other aspects that involve deafness and have the deaf community as a sample.

El presente estudio tuvo como objetivo realizar una revisión integradora de la literatura sobre estudios científicos que involucran la representación social y la sordera. Para ello, se realizó una búsqueda en las bases de datos SciELO.org, PePSIC, LILACS, PsycINFO (APA) y Scopus (Elsevier), a través de la plataforma de Publicaciones CAPES, en septiembre de 2020. Los descriptores fueron: representación social, sordo, sordo y con discapacidad auditiva, en portugués, inglés y español. Se analizaron once artículos con resultados sobre la población sorda y auditiva. En los artículos con personas sordas se observan temas sobre identidad, cultura y derechos como ciudadanos para resolver y modificar estereotipos sobre la sordera. Se realizaron encuestas con los oyentes a familiares y sociedad en general, destacando representaciones basadas en estereotipos negativos y aspectos limitantes. Además, se sugieren nuevas producciones científicas que dan continuidad a la teoría de las representaciones sociales asociadas a otros aspectos que involucran la sordera y tienen como muestra a la comunidad sorda.

[Sleep quality and mental well-being of mothers caring for children with disabilities and requiring oxygen therapy and night care at home].

Objectives　This study aimed to 1) determine what kind of care for children with disabilities is related to the mothers' sleep and mental well-being and 2) objectively measure the sleep state of mothers responsible for children with disabilities.Methods　A self-administered questionnaire was distributed to 180 mothers of children enrolled in the Special Needs Education School in prefecture A. Amongst these, nine who provided consent underwent objective sleep measurements using actigraphy. The questionnaire investigated the lifestyle and the type of care needed for children with disabilities and their influence on the mothers. Subjective sleep quality (Pittsburgh Sleep Quality Index) and mental well-being status (General Health Questionnaire) of the mothers were also evaluated. Logistic regression analysis was performed to analyze the background factors affecting sleep quality and mental health.Results　Of the 180 participants, 84 (46.7%) provided valid responses. Fifty-two (64.2%) and 34 (42.0%) individuals subjectively reported poor sleep quality and poor mental well-being, respectively. Mothers having responsibilities of oxygen therapy and night care reported significantly poor sleep quality and mental well-being. Moreover, objective sleep measurements showed that the changes in the child's physical condition, such as ventilator management, epileptic seizures, and fever, resulted in prolonged waking times and affected the sleep efficiency of the mother.Conclusion　Responsibilities toward providing oxygen therapy and night care for their children with disabilities influenced the sleep quality and mental well-being of the mothers. Thus, it is important to provide support to mothers caring such disabled children.

Association between Participation of Children with Disabilities and the Child, Family, and Environmental Factors in Shanghai, China: A Cross-Sectional Study.

Participation is essential to a child's health and well-being, whereas children with disabilities may lack the associated benefits because of physical restrictions. This study aims to examine the association between the participation of children with disabilities and the child, family, and environmental factors. A total of 433 children with disabilities aged 3-18 and their family caregivers were included. Three binary logistic regression models were respectively established to identify the significant factors associated with children's home, school, and community participation. Our main empirical results showed that among 433 children with disabilities, 44.3%, 47.6%, and 58.7% of them never or seldom participated in home, school, and community activities. Child and family factors were found to be dominantly associated with children's participation, and significant factors associated with the home, school, and community participation of children were different, including children's disability type, sleep problems and emotional stability, caregivers' education, mental HRQOL, rehabilitation belief, and number of children in the family. These results highlight that the participation of children with disabilities in mainland China urgently needs to be enhanced, and further research might be focused on validating the causal relationships between participation and significant child and family factors identified in this study.

The Impact of the COVID-19 Pandemic on Children With Special Needs: A Descriptive Study.

Amid the COVID-19 crisis, children with special needs may have challenges. To determine emotional and behavioral challenges, 116 children aged 4 to 6 years, who received special education, were evaluated. COVID-19 negatively affected the families at a rate of 94.6%; 76.5% of the children's daily routines were worsened. Although the one-on-one time duration with the mother and father increased (73.5% and 66.7%), reading books (40.6%), play (17.2%), and overall activity durations (25.7%) decreased. The median screen time increased from 1 to 3 hours. According to the families, there was a regression in development in 18.8% of children. Special education practices at home were ceased by 17.2% of families, and a significant difference was found between the groups with and without regression in development in terms of the frequency of continuing special education at home. The development of children with special needs is an ongoing urgent situation; thus, besides protecting and promoting physical health during the pandemic, families and children should also be supported for developmental needs.