Percepção de cuidadores sobre a qualidade de serviços de Fisioterapia Neuropediátrica em Centros de reabilitação no estado da Paraíba, Brasil / Caregiver perception of the quality of Neuropediatric Physiotherapy services at rehabilitation Centers in the State of Paraíba, Brazil

Este trabalho teve como objetivo avaliar a percepção de curadores sobre a qualidade dos serviços de Fisioterapia neuropediátrica ofertados em Centros Especializados em reabilitação (CER) no Brasil. Trata-se de um estudo transversal, quantitativo, de caráter avaliativo, cujo público-alvo foi representado por cuidadores das crianças em reabilitação. O instrumento AQSF-Neuroped foi utilizado para avaliar a qualidade dos serviços de Fisioterapia neuropediátrica em três CER, com base na percepção de 320 cuidadores. Utilizou-se o teste de hipótese para uma proporção a partir de cada item e dimensão do AQSF-Neuroped. Os modelos Weight of Evidence e Análise de Classes Latentes foram usados para avaliar o comportamento de variáveis sobre a percepção de qualidade. Obteve-se um escore médio total de qualidade de 133±14 pontos, implicando uma percepção positiva de qualidade; porém, há aspectos relacionados à estrutura física (dimensão interpessoal) e ao acesso (dimensão organizacional II) que precisam ser aprimorados (p-valores<0,05) para melhor atender às expectativas dos cuidadores. O CER B foi melhor avaliado dentre os demais serviços (IV<0,10). A ACL permitiu identificar, por meio da formação de grupo, características do cuidador que determinaram uma perspectiva positiva ou negativa da qualidade. Assim, disponibilizou-se os resultados para subsidiar as melhores práticas nos serviços.

This study evaluates the perception of caregivers of the quality of neuropediatric physiotherapy services offered at specialized rehabilitation centers (SRC) in Brazil. This is a cross-sectional, quantitative, evaluative study whose target population was caregivers of children in rehabilitation. The AQSF-Neuroped instrument was used to evaluate the quality of three SRC based on the perception of 320 caregivers. The one-proportion hypothesis test was used based on each AQSF-Neuroped item and dimension. The Weight of Evidence and Latent Class Analysis models were used to evaluate the influence of variables on the perception of quality. A mean overall quality score of 133±14 points indicated a positive perception of quality; however, there were aspects related to physical structure (Interpersonal Dimension) and access (Organizational Dimension II) that needed to be improved (p-values<0.05) to better meet the expectations of caregivers. By group formation, the LCA enabled identification of the caregivers' characteristics that determined either a positive or negative perspective of the quality. SRC B was best evaluated among all SRC (IV<0.10). Finally, managers are provided with results to support improvements in services.

Considerações fenomenológicas sobre a percepção de si da criança/adolescente convivendo com irmão com deficiência / Phenomenological considerations regarding the self-perception of children/adolescents living with siblings with disabilities

Resumo O objetivo deste artigo é compreender a percepção de si de crianças/adolescentes que convivem com o irmão com deficiência. Pesquisa qualitativa, com abordagem hermenêutico-fenomenológica e participação de 20 crianças e adolescentes que convivem com o irmão com deficiência em um município do estado do Rio Grande do Sul, Brasil. Utilizou-se entrevista fenomenológica, diário de campo e interpretação hermenêutica. Evidenciaram-se lacunas de cuidado, necessidade de atenção, compreensão por parte da família, visto a atenção ser ao irmão com deficiência. O medo e a angústia da morte dos avós, da morte do irmão com deficiência, a saudade dos avós após sua morte. Percebe-se que essas crianças/adolescentes convivem e questionam o nascimento e a existência do irmão. Desvelou-se, ao dar luz ao mundo vivido da criança/adolescente, lacunas e fragilidades na relação com os pais, na atenção à saúde e nas situações de vulnerabilidades vivenciadas pela criança/adolescente e a família. Dessa forma, é necessário atenção a essa população, considerando que convivem com irmãos com deficiência e apresentam diversas vulnerabilidades que precisam ser discutidas, visando elaborações de estratégias de cuidado inclusivas e eficientes.

Abstract The scope of this article was to understand the self-perception of children/adolescents who live with siblings with disabilities. It involved qualitative research, with a hermeneutic-phenomenological approach, with 20 children and adolescents who live with a disabled sibling from a municipality in the state of Rio Grande do Sul/Brazil. Phenomenological interviews, field diaries and hermeneutic interpretations were used. There were gaps in care, need for attention and understanding on the part of the family, due to the attention given to the disabled sibling. Also, the fear and anguish of the death of the grandparents, the death of the disabled sibling, the nostalgia of the grandparents after their death. It was shown that these children/adolescents live together and question the birth and existence of the sibling. By shining a light on the child/adolescent's life experience, gaps and weaknesses in the relationship with parents, in health care, in situations of vulnerabilities experienced by the child/adolescent and family were revealed. Thus, attention needs to be devoted to this population, considering that they live with siblings with disabilities, and have several vulnerabilities that need to be discussed, aiming at developing inclusive and efficient care strategies.

El desarrollo psicomotor en niños menores de 5 años con cardiopatía congénita, Madre de Dios-Perú

A nivel mundial, la cardiopatía congénita en los niños es la malformación más común que puede tener un bebé al nacer. Objetivo. Analizar el comportamiento del desarrollo psicomotor de los niños menores a 5 años con cardiopatía congénita en la región de Madre de Dios, Perú. Materiales y métodos. Se consideró un enfoque cuantitativo, de tipo observacional analítica con diseño de cohorte prospectivo, con muestreo no probabilístico y una muestra de 6 infantes a quienes se aplicó el instrumento de recolección de información "observación del desarrollo psicomotor en niños con cardiopatía congénita". Resultados. El género del paciente varón en promedio es de 33.33%, la edad en promedio de los pacientes con cardiopatía congénita es de 2 años; el tipo de cardiopatía congénita de los pacientes es atresia pulmonar y estenosis aortica, mostrando un desarrollo psicomotor promedio de nivel medio; el tipo de cirugía desarrollado en el paciente en promedio es de tipo definitivo; alcanzando de esta manera una estancia hospitalaria de 16 a 30 días en promedio y alcanzando un estado nutricional promedio de desnutrición severa. Además, la relación entre el tipo de cardiopatía congénita con el desarrollo psicomotor es positiva, toda vez que, ante un incremento del desarrollo psicomotor de los pacientes, entonces los casos de cardiopatía congénita incrementan (ρ de Pearson =0.6919). Conclusiones. Se determinó que, en los pacientes estudiados el desarrollo psicomotor es de nivel medio; la misma que está relacionado por el tipo de cardiopatía congénita que tiene, donde el 33.33% de los pacientes presentan atresia pulmonar y el 16.67% tiene estenosis aortica; lo que demuestra que la relación entre el tipo de cardiopatía congénita con el desarrollo psicomotor es positiva o directa.

Worldwide, congenital heart disease in children is the most common malformation that an infant may have at birth. Objective. To analyze the behavior of psychomotor development in children under 5 years of age with congenital heart disease in the region of Madre de Dios, Peru. Materials and methods. A quantitative, analytical observational approach with prospective cohort design was considered, with non-probabilistic sampling and a sample of 6 infants to whom the data collection instrument "observation of psychomotor development in children with congenital heart disease" was applied. Results. The average gender of the male patient is 33.33%; the average age of the patients with congenital heart disease is 2 years; the type of congenital heart disease of the patients is pulmonary atresia and aortic stenosis, showing an average psychomotor development of medium level; the type of surgery developed in the patient on average is of definitive type; thus reaching a hospital stay of 16 to 30 days on average and reaching an average nutritional status of severe malnutrition. In addition, the relationship between the type of congenital heart disease and psychomotor development is positive, since, with an increase in the psychomotor development of the patients, the cases of congenital heart disease increase (Pearson's ρ =0.6919). Conclusions. It was determined that, in the patients studied, psychomotor development is of medium level; the same is related to the type of congenital heart disease they have, where 33.33% of the patients present pulmonary atresia and 16.67% have aortic stenosis; which shows that the relationship between the type of congenital heart disease and psychomotor development is positive or direct.

Em todo o mundo, a doença cardíaca congênita em crianças é a malformação mais comum que um bebê pode ter ao nascer. Objetivo. Analisar o comportamento do desenvolvimento psicomotor em crianças com menos de 5 anos de idade com cardiopatia congênita na região de Madre de Dios, no Peru. Materiais e métodos. Foi considerada uma abordagem observacional quantitativa e analítica, com um projeto de coorte prospectivo, amostragem não probabilística e uma amostra de 6 bebês aos quais foi aplicado o instrumento de coleta de dados "observação do desenvolvimento psicomotor em crianças com cardiopatia congênita". Resultados. O sexo médio do paciente masculino é de 33,33%, a idade média dos pacientes com cardiopatia congênita é de 2 anos; o tipo de cardiopatia congênita dos pacientes é atresia pulmonar e estenose aórtica, apresentando um desenvolvimento psicomotor médio de nível médio; o tipo de cirurgia desenvolvida no paciente é, em média, do tipo definitiva; atingindo, assim, uma permanência hospitalar de 16 a 30 dias, em média, e atingindo um estado nutricional médio de desnutrição grave. Além disso, a relação entre o tipo de cardiopatia congênita e o desenvolvimento psicomotor é positiva, pois, com o aumento do desenvolvimento psicomotor dos pacientes, aumentam os casos de cardiopatia congênita (ρ de Pearson = 0,6919). Conclusões. Foi determinado que, nos pacientes estudados, o desenvolvimento psicomotor é de nível médio; isso está relacionado com o tipo de cardiopatia congênita que eles têm, onde 33,33% dos pacientes têm atresia pulmonar e 16,67% têm estenose aórtica; o que mostra que a relação entre o tipo de cardiopatia congênita e o desenvolvimento psicomotor é positiva ou direta.

Preventive program based on multiple intelligences to promote oral health in disabled children from Chiclayo, Peru / Programa preventivo basado en inteligencias múltiples para promover la salud bucal en niños discapacitados de Chiclayo, Perú

Introduction: Children with physical disabilities often present deficient oral hygiene and eating habits that threaten optimal oral health. Objective: To evaluate the result of a preventive program based on multiple intelligences to pro-mote oral health care in children with physical disabilities in Chiclayo - Peru. Materials and Methods: A quasi-experimental, quan-titative, prospective and longitudinal study was carried out from the year 2020, to test a preventive intervention based on multiple intelligences (MI), comparing it with an intervention with traditional methodology, whose purpose was in both cases promote preventive oral health care in 167 boys and girls with physical disabilities from four Special Basic Education Centers (CEBES) in Chiclayo. For the pre- and post-test evaluation using a dental record of oral hygiene practices, oral hygiene index and dietary exposure to sugary carbohydrates, the Mann Whitney U test was required, with a confidence level of 95%. Results: After not very encouraging findings in the pretest for both groups, significant changes were observed in the posttest in favor of the IM-based program, for which 58% of schoolchildren registered an adequate oral hygiene index, 69.2% brushed twice to three times a day and that only 35.8% present regular exposure to carbohydrates. Statistical significance was evidenced in favor of the MI-based intervention for the three indicated variables (p= 0.000). Conclusions: The application of the IM-based program achieved better results in the significant promotion of oral hygiene practices with a favorable record of the IHO and by reducing the exposure to carbohydrates in a vulnerable population.Keywords: Health promotion; Oral health; Preventive dentistry; Health education; Children with disabilities.

Vulnerabilidade de Crianças com Necessidades Especiais de Saúde: implicações para a enfermagem / Vulnerability of Children with Special Health Needs: implications for nursing

RESUMO Objetivou-se analisar o perfil social e clínico das Crianças com Necessidades Especiais de Saúde internadas nas enfermarias pediátricas de um hospital materno-infantil do Distrito Federal. Trata-se de pesquisa quantitativa de corte transversal, realizada com 120 crianças e seus familiares/cuidadores principais. Utilizou-se questionário estruturado com 26 itens, que, posteriormente, passou pela análise descritiva e inferencial dos dados. Os resultados apontam a mãe como principal familiar/cuidador (92,5%), com nível médio de escolaridade (58,3%). As crianças eram, majoritariamente, do sexo masculino (63%), com malformações congênitas, deformidades e anomalias cromossômicas (29,1%). Houve correlação positiva entre escolaridade do familiar/cuidador e necessidade de internação na Unidade de Terapia Intensiva (p-valor<0,01) e o número de internações nos últimos 12 meses com as demandas de cuidados tecnológicas (p-valor<0,01). Assim, identificaram-se também a vulnerabilidade social das famílias e a necessidade de estratégias de educação em saúde voltadas para as demandas tecnológicas de cuidado.

ABSTRACT The objective of the study was to describe and analyze the social and clinical profile of Children with Special Health Needs hospitalized in the pediatric wards of a maternal-infant hospital in the Federal District. This is a cross-sectional, quantitative survey carried out with 120 children and their family members/main caregivers. A structured questionnaire with 26 items was used, which later went through a descriptive and inferential analysis of the data. The results point to the mother as the main family member/caregiver (92.5%), with a medium level of education (58.3%). The children were mostly male (63%), with congenital malformations, deformities, and chromosomal anomalies (29.1%). There was a positive correlation between family/caregiver education and need for hospitalization in the Intensive Care Unit (P-Value<0.01) and the number of hospitalizations in the last 12 months with technological care demands (P-Value<.01). Thus, the social vulnerability of families and the need for health education strategies focused on the demands of technological care were also identified.

Direitos e políticas públicas: percepções de famílias de crianças com deficiência / Public rights and policies: perceptions of families of children with disabilities / Políticas y derechos públicos: percepciones de las familias de niños con discapacidad

Objetivo: Identificar o conhecimento das famílias de crianças com deficiência acerca dos direitos e políticas públicas voltadas para as pessoas com deficiência. Métodos: Trata-se de uma pesquisa descritiva de abordagem qualitativa, realizada em um Centro de Reabilitação no interior do Ceará, no período de julho a setembro de 2018 com 12 familiares de crianças com deficiência, por meio de uma entrevista semi-estruturada. Para a análise dos dados foi utilizada a técnica de análise de conteúdo de Bardin, resultando em duas categorias: o conhecimento limitado e a busca de informações acerca dos direitos da criança e o conhecimento inadequado dos direitos da criança. Resultados: As percepções acerca dos direitos das crianças com deficiência, identificou-se conhecimento incipiente acerca dos direitos e políticas públicas voltadas para a criança com deficiência, tanto no que se refere como a acessibilidade, a inclusão social, a saúde, o trabalho, a educação, a isenção de tributos, o transporte, o BPC, entre outros. Conclusão: Faz-se necessário refletir sobre formas de acesso a esse conhecimento para que os direitos assegurados a essas crianças não sejam impedidos ou anulados, dificultando as suas liberdades fundamentais. (AU)

Objective: To identify the knowledge of families with children with disabilities about public rights and policies aimed at people with disabilities. Methods: This is a descriptive research with a qualitative approach, conducted at the Rehabilitation Center of Sobral-CE, from July to September 2018 with 12 family members of children with disabilities. For data analysis, Bardin's content analysis technique was used, resulting in two categories: limited knowledge and the search for information about the rights of the child and inadequate knowledge of the rights of the child. Results: Regarding the perceptions about the rights of children with disabilities, there was a fragility of information and lack of knowledge about rights and public policies aimed at children with disabilities. Conclusion: It is necessary to reflect on ways of accessing this knowledge so that the rights guaranteed to these children are not impeded or annulled, hindering their fundamental freedoms. (AU)

Objetivo: Identificar el conocimiento de las familias de niños con discapacidad sobre los derechos públicos y las políticas dirigidas a las personas con discapacidad. Métodos: Esta es una investigación descriptiva con un enfoque cualitativo, realizada en el Centro de Rehabilitación de Sobral-CE, de julio a septiembre de 2018 con 12 familiares de niños con discapacidades. Para el análisis de datos, se utilizó la técnica de análisis de contenido de Bardin, que dio como resultado dos categorías: conocimiento limitado y la búsqueda de información sobre los derechos del niño y el conocimiento inadecuado de los derechos del niño. Resultados: En cuanto a las percepciones sobre los derechos de los niños con discapacidad, hubo una fragilidad de la información y falta de conocimiento sobre los derechos y las políticas públicas dirigidas a los niños con discapacidad. Conclusión: Es necesario reflexionar sobre las formas de acceder a este conocimiento para que los derechos garantizados a estos niños no se vean obstaculizados o anulados, lo que obstaculiza sus libertades fundamentales. (AU)

Direitos e políticas públicas: percepções de famílias de crianças com deficiência / Public rights and policies: perceptions of families of children with disabilities / Políticas y derechos públicos: percepciones de las familias de niños con discapacidad

Objetivo: Identificar o conhecimento das famílias de crianças com deficiência acerca dos direitos e políticas públicas voltadas para as pessoas com deficiência. Métodos: Trata-se de uma pesquisa descritiva de abordagem qualitativa, realizada em um Centro de Reabilitação no interior do Ceará, no período de julho a setembro de 2018 com 12 familiares de crianças com deficiência, por meio de uma entrevista semi-estruturada. Para a análise dos dados foi utilizada a técnica de análise de conteúdo de Bardin, resultando em duas categorias: o conhecimento limitado e a busca de informações acerca dos direitos da criança e o conhecimento inadequado dos direitos da criança. Resultados: As percepções acerca dos direitos das crianças com deficiência, identificou-se conhecimento incipiente acerca dos direitos e políticas públicas voltadas para a criança com deficiência, tanto no que se refere como a acessibilidade, a inclusão social, a saúde, o trabalho, a educação, a isenção de tributos, o transporte, o BPC, entre outros. Conclusão: Faz-se necessário refletir sobre formas de acesso a esse conhecimento para que os direitos assegurados a essas crianças não sejam impedidos ou anulados, dificultando as suas liberdades fundamentais. (AU)

Objective: To identify the knowledge of families with children with disabilities about public rights and policies aimed at people with disabilities. Methods: This is a descriptive research with a qualitative approach, conducted at the Rehabilitation Center of Sobral-CE, from July to September 2018 with 12 family members of children with disabilities. For data analysis, Bardin's content analysis technique was used, resulting in two categories: limited knowledge and the search for information about the rights of the child and inadequate knowledge of the rights of the child. Results: Regarding the perceptions about the rights of children with disabilities, there was a fragility of information and lack of knowledge about rights and public policies aimed at children with disabilities. Conclusion: It is necessary to reflect on ways of accessing this knowledge so that the rights guaranteed to these children are not impeded or annulled, hindering their fundamental freedoms. (AU)

Objetivo: Identificar el conocimiento de las familias de niños con discapacidad sobre los derechos públicos y las políticas dirigidas a las personas con discapacidad. Métodos: Esta es una investigación descriptiva con un enfoque cualitativo, realizada en el Centro de Rehabilitación de Sobral-CE, de julio a septiembre de 2018 con 12 familiares de niños con discapacidades. Para el análisis de datos, se utilizó la técnica de análisis de contenido de Bardin, que dio como resultado dos categorías: conocimiento limitado y la búsqueda de información sobre los derechos del niño y el conocimiento inadecuado de los derechos del niño. Resultados: En cuanto a las percepciones sobre los derechos de los niños con discapacidad, hubo una fragilidad de la información y falta de conocimiento sobre los derechos y las políticas públicas dirigidas a los niños con discapacidad. Conclusión: Es necesario reflexionar sobre las formas de acceder a este conocimiento para que los derechos garantizados a estos niños no se vean obstaculizados o anulados, lo que obstaculiza sus libertades fundamentales. (AU)

Challenges of caregivers providing care to children with disabilities at non-governmental organisations in Tshwane townships, South Africa

Caregivers of children with disabilities are vital stakeholders when it comes to safeguarding the health, well-being and overall survival of the children that they care for. Caregivers, however, face many challenging conditions that make it difficult for them to optimally fulfil their caregiving role. Understanding these challenges is crucial for developing empowerment programmes for caregivers, which will ensure that children with disabilities receive comprehensive, optimal care and that caregivers experience a good quality of life. Objectives: The aim of this study was to explore and describe the experiences of caregivers providing care to children with disabilities at non-governmental organisations (NGOs) in townships of Tshwane, South Africa. Method: This study followed an exploratory, descriptive and contextual research design within a qualitative methodology. The population in this study included caregivers who care for children with disabilities at NGOs (n = 10). Participants for the study were selected using the purposive sampling technique. Data were collected by conducting semi structured interviews with caregivers. Data were analysed according to the six phases of thematic analysis proposed by. Results: The study revealed six themes that represent the challenges experienced by caregivers, namely (1) initial impressions, (2) rendering care, (3) stress, (4) lack of outside support, (5) coping and (6) poor community recognition. Conclusion: Support from the Departments of Health and Social Development and other institutions providing community rehabilitation services to townships should be provided to caregivers in order to empower them with skills and knowledge to effectively address the challenges they face so that they can render optimal care to the children they care for. Contribution: Results of this study could assist in ensuring improved recognition, resilience and supportive resources for caregivers in collaboration with community-based rehabilitation stakeholders in the community that would ultimately lead to improved care for children with disabilities in townships within South Africa.

Psychosocial challenges of children with disabilities in Sekhukhune District, Limpopo province of South Africa: Towards a responsive integrated disability strategy

Disability, and everything it encompasses, presents major challenges to individuals, families and communities worldwide. Children with disabilities (CWD) are marginalised and excluded in most societies. Discrimination and prejudice towards CWD are compounded by poverty, lack of essential services and support and sometimes a hostile and inaccessible environment. Objectives: The study sought to examine the psychosocial challenges experienced by CWD in the Sekhukhune district of Limpopo province, South Africa. Based on the identified, articulated and expressed challenges, the study sought to recommend improvement of the existing Integrated National Disability Strategy (INDS) for greater responsiveness to the needs of CWD at both provincial and local levels. Method: The interpretivist qualitative mode of enquiry was the chosen methodology for this study. Phenomenology and descriptive research designs guided the study. Purposive sampling was employed, and data were collected from 36 participants using three triangulated methods: individual in-depth interviews, focus group discussions and key informant interviews. Thematic data analysis was used to analyze data. Results: The findings revealed that CWD in Sekhukhune experienced numerous challenges which affected their social functioning, development and general well-being. Aggravating factors included stigma, labelling and discrimination; disability-specific discrimination and bullying; exclusive education; sexual exploitation; lack of governmental support and poor implementation of disability-specific policies, amongst others. Conclusion: The provisions of the INDS to promote inclusion, integration, mainstreaming and equitable access to resources and services remained an ideal rather than a reality for CWD in Sekhukhune.

Needs assessment of caregivers of children with disabilities in resource-limited settings / Journal of Rural Medicine

Objective: This study aimed to identify and classify the needs of caregivers of children with disabilities living in resource-limited settings and develop a framework for need assessment.Participants and Methods: This study was conducted in the Maha Sarakham Province, Thailand, with 15 caregivers caring for children with disabilities recruited from hospitals, the Association for the Disabled, and primary health centers. Semi-structured interviews were conducted in local dialects, recorded, transcribed, converted into standard Thai, and then into English for thematic analysis. Meaning units corresponding to caregivers’ needs were extracted, interpreted, coded, and hierarchically organized into subcategories by comparing similarities and differences among the extracted codes. The subcategories were further grouped and abstracted into categories, and then domains of caregivers’ needs were formed.Results: Nineteen categories were identified across five domains of caregivers’ needs: health and medical, welfare, educational, social, and informational. Although basic medical treatment was covered, specific support, such as referral to a specialist, rehabilitation, or psychological support, was limited. Financial support and relief from the care burden are the main welfare needs. Educational needs were identified to provide knowledge to children and to offer respite to their caregivers. Social needs revealed ethical problems that arose because of strong rural community ties, making it difficult to maintain privacy. Informational needs were intertwined with the other four domains. In rural areas, where parents of children with disabilities migrate to cities to find work, the special needs of grandparents who were primary caregivers of the children needed to be addressed.Conclusion: This study provides a conceptual framework for comprehensive needs assessment and policy development for caregivers of children with disabilities living in resource-limited settings.

Solidariedade, maturidade e ambivalência em avós e mães de crianças com deficiência: potencialidades e recursos nas trocas intergeracionais1 / Solidarity, maturity and ambivalence of grandmothers and mothers of children with disabilities: potentialities and resources in intergenerational exchanges

RESUMO: A literatura consagrou a importância de suporte e de atitudes solidárias na vida de pessoas que enfrentam adversidades. Nesse sentido, este estudo objetivou identificar e discutir o fenômeno da solidariedade intergeracional entre mães e avós de crianças com deficiência em uma amostra brasileira. Trata-se de um estudo descritivo, de caráter quantitativo. Os dados foram coletados com 76 participantes: díades de avós e mães de crianças com deficiência que apresentam dependência de adultos no cotidiano. Instrumentos de autorrelato foram administrados individualmente para apreender dimensões da relação intergeracional, de ambivalência e maturidade das mães e das avós. Os resultados indicam que a ambivalência intergeracional é a dimensão com valores mais baixos nas mães, mas uma das dimensões com valores mais elevados nas avós, juntamente à maturidade parental. Algumas implicações podem ser retiradas para a necessidade de levar em consideração a riqueza e a complexidade existente na reciprocidade das relações intergeracionais no geral e, em particular, entre cuidadoras de crianças com elevado nível de dependência. As intervenções, que visem colaborar para a coesão e bem-estar dessas famílias, devem considerar o papel desempenhado não só pela mãe e pelo pai, como cuidadores principais, mas também pelos avós, atendendo tanto ao apoio que prestam como às suas próprias necessidades de apoio, de informação e de autonomia. Estudos futuros podem tentar esclarecer, do ponto de vista qualitativo e quantitativo, essas relações diádicas, assim como introduzir outros indicadores de risco e de ajustamento adicionais, como outras pessoas que podem ser fontes de apoio, sejam ou não membros da família biológica.

ABSTRACT: Literature has established the importance of support and solidary attitudes in the lives of people facing adversity. In this sense, this study aimed to identify and discuss the phenomenon of intergenerational solidarity between mothers and grandmothers of children with disabilities in a Brazilian sample. This is a descriptive, quantitative study. Data were collected from 76 participants: dyads of grandmothers and mothers of children with disabilities who are dependent on adults in their daily lives. Self-report instruments were administered individually to apprehend dimensions of the intergenerational relationship, ambivalence and maturity of mothers and grandmothers. The results indicate that intergenerational ambivalence is the dimension with the lowest values in mothers, but one of the dimensions with the highest values in grandmothers, together with parental maturity. Some implications can be drawn from the need to take into account the richness and complexity existing in the reciprocity of intergenerational relationships in general and, in particular, between caregivers of children with a high level of dependency. Interventions aimed at contributing to the cohesion and well-being of these families must consider the role played not only by the mother and father, as the main caregivers, but also by the grandparents, attending both the support they provide and their own needs support, information and autonomy. Future studies may try to clarify, from a qualitative and quantitative point of view, these dyadic relationships, as well as to introduce other additional risk and adjustment indicators, such as other people who can be sources of support, whether or not they are members of the biological family.

Outlining the therapeutic itineraries of children with disabilities in the professional health care subsystem / Construcción de los itinerarios terapéuticos de niños con discapacidad en el subsistema profesional de cuidados en salud / Construção dos itinerários terapêuticos de crianças com deficiência no subsistema profissional de cuidados em saúde

ABSTRACT Objectives: to identify the outlining of therapeutic itineraries of families of children with disabilities in the professional health care subsystem. Methods: qualitative research carried out in two specialized services in the state of Ceará, with 41 family members interviewed using the life path technique and reports submitted to descending hierarchical classification and similitude analysis, with the help of the IRaMuTeQ software and the theoretical framework of health care systems. Results: the classes described the families' itineraries in five paths, related to faith, support structures, medical behaviors, professionals, and health services. The professional subsystem stood out as deficient in outlining the therapeutic itinerary for access to health care for children with disabilities, without promoting integration between services in the Care Network. Final considerations: the families' therapeutic itineraries showed homogeneous discourse with themes related to the care of professionals and spiritual aspects.

RESUMEN Objetivos: identificar la construcción de itinerarios terapéuticos de familias de niños con discapacidad, en el subsistema profesional de cuidados con la salud. Métodos: investigación cualitativa realizada en dos servicios especializados en Ceará, con 41 familiares entrevistados por la técnica de trayectoria de vida, con relatos sometidos a clasificación jerárquica descendente y análisis de similitud, con auxilio del software IRaMuTeQ y del referencial teórico de los sistemas de cuidados con la salud. Resultados: las clases describieron el itinerario de las familias en cinco trayectos, relacionados a fe, estructuras de soporte, conductas médicas, profesionales y servicios de salud. El subsistema profesional se destacó como deficitario en el itinerario terapéutico para acceso al cuidado con la salud de niños con discapacidad, sin promover integración entre servicios de la Red de Atención. Consideraciones finales: el itinerario terapéutico de las familias presentó discurso homogéneo con temas relativos al cuidado de los profesionales y aspectos espirituales.

RESUMO Objetivos: identificar a construção dos itinerários terapêuticos das famílias de crianças com deficiência no subsistema profissional de cuidados com a saúde. Métodos: pesquisa qualitativa realizada em dois serviços especializados no estado do Ceará, com 41 familiares entrevistados pela técnica de trajetória de vida, com relatos submetidos à classificação hierárquica descendente e análise de similitude, com auxílio do software IRaMuTeQ e do referencial teórico dos sistemas de cuidados com a saúde. Resultados: as classes descreveram o itinerário das famílias em cinco percursos, relacionados a fé, estruturas de suporte, condutas médicas, profissionais e serviços de saúde. O subsistema profissional destacou-se como deficitário no itinerário terapêutico para acesso ao cuidado com a saúde de crianças com deficiência, sem promover integração entre serviços da Rede de Atenção. Considerações finais: o itinerário terapêutico das famílias apresentou discurso homogêneo com temas relativos ao cuidado dos profissionais e aspectos espirituais.

Coping Behaviors and Its Influential Factors for Caregivers of Children with Disabilities in Developed Areas in China / 中国康复理论与实践

Objective:To investigate the current status of coping behaviors among caregivers of children with disabilities in the context of rehabilitation and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 358 caregivers (parents) of children with disabilities were surveyed in Shanghai. They were evaluated in the context of rehabilitation of children with disabilities with Coping Health Inventory for Parents (CHIP). Multiple linear stepwise regression analysis was used to explore the influencing factors. Results:The total score of CHIP was (106.00±23.45) and the average score of CHIP was (2.36±0.52). Among the caregiver factor, mothers (B = 7.607, 95%CI 2.477 to 12.737, P = 0.004), and caregivers who didn't need to care for others (B = 5.758, 95%CI 1.174 to 10.343, P = 0.014) reported higher CHIP score. Among the child factors, higher CHIP score was reported in caregivers who had more partners (B = 2.925, 95%CI 1.233 to 4.618, P < 0.001), participated in public space activities more frequently (B = 3.906, 95%CI 1.743 to 6.068, P < 0.001) and perceived changes in rehabilitation outcomes (B = -16.832, 95%CI -31.471 to -2.193, P = 0.024); CHIP score was lower in thoses of 3 to < 6 years old (B = -7.914, 95%CI -15.157 to -0.671, P = 0.032) and with intellectual disability children (B = -11.153, 95%CI -21.360 to -0.947, P = 0.032). Among the environmental factors, caregivers who perceived more friendly social attitude (B = 2.560, 95%CI 0.615 to 4.505, P = 0.010) reported higher CHIP score. Conclusion:It is proposed to learn the coping needs of caregivers of children with disabilities in the context of rehabilitation. The coping behaviors of caregivers are influenced by multiple factors, such as children's individual, caregivers and environment.

Depression and Its Influencing Factors of Caregivers for Children with Disabilities / 中国康复理论与实践

Objective:To investigate the depression status of caregivers of children with disabilities and analyze the influencing factors. Methods:From August to September, 2020, a one-to-one interview was conducted using a convenience sampling method to determine the depression status of 334 caregivers of children with disabilities in Shanghai. Patient Health Questionnaire 9 Item (PHQ-9) was used to evaluate the depression status. The data were analyzed with univariate analysis from three aspects: caregiver, care recipient and environment. Then, the statistically significant variables were included in a dichotomous logistic regression. Results:The depression rate of 334 caregivers of children with disabilities was 35.9%. Among the caregiver factors, female caregivers had a higher risk of depression than male (OR = 2.193, 95%CI 1.131 to 4.254, P = 0.002). Among the care recipient factors, poor sleep quality (OR = 1.942, 5%CI 1.113 to 3.386, P < 0.05), emotional instability (OR = 17.456, 95%CI 2.534 to 120.240, P < 0.05) and types of disability (ORintelligence = 5.401, 95%CI 1.995 to 14.624; ORmental = 3.712, 95%CI 1.615 to 8.530; ORphysical = 2.913, 95%CI 1.330 to 6.379; P < 0.05) were associated with the depression of caregivers. Among the environmental factors, caregivers in rented housing had a higher risk of depression than those in owner-occupied housing (OR = 1.727, 95%CI 1.135 to 2.627, P < 0.05). Conclusion:The depression status of caregivers of children with disabilities is not optimistic, with higher rates of reported depression among female caregivers, caregivers in rented housing; caregivers of children with intellectual, mental and physical disabilities, and poor sleep quality and emotional instability.

Anxiety and Its Influencing Factors of Caregivers for Children with Disabilities / 中国康复理论与实践

Objective:To investigate the anxiety state and its influencing factors for caregivers of children with disabilities. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. Crosstab was used to analyze the anxiety state and binary logistic regression analysis was used for identifying key factors. Results:There were 73.2% parents and 26.8% grandparents among 496 caregivers. Physical disabilities accounted most (26.0%) in the children. About 35.1% caregivers reported their anxiety state, and more than 10% reported moderate to severe anxiety. The results of logistic regression analysis showed that grandfather reported 0.318 times anxiety to mother (OR = 0.318, 95%CI 0.113 to 0.900, P = 0.031). Sleep problems (OR = 1.713, 95%CI 1.046 to 2.805, P = 0.032) and emotional functioning (ORgenerally = 0.057, 95%CI 0.009 to 0.340, P = 0.002; ORstable = 0.031, 95%CI 0.005 to 0.205, P < 0.001) of children were associated with the rate of caregiver-reported anxiety. Among family environment factors, monthly per capita household income (OR5000-< 10000 Yuan = 0.463, 95%CI 0.236 to 0.909, P = 0.025; OR≥ 10,000 Yuan = 0.325, 95%CI 0.160 to 0.660, P = 0.002) and housing status (OR = 0.356, 95%CI 0.208 to 0.608, P < 0.001) were associated with the rate of caregiver-reported anxiety. Among social environment factors, caregivers who were satisfied with current accessibility reported lower rate of anxiety (ORsatisfied = 0.136, 95%CI 0.031 to 0.602, P = 0.009). Conclusion:The anxiety state of caregivers of children with disabilities is higher than that of the general population. When caregivers are caring for a child with sleep problem or emotional issue, have low household income, or dissatisfied with the barrier-free environment, they may face higher risk of anxiety.

Quality of Life and It's Influencing Factors for Caregivers of Children with Disabilities / 中国康复理论与实践

Objective:To explore the quality of life of caregivers of children with disabilities and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. The 12-item Short-form Health Survey (SF-12) was used to measure the quality of life of 496 caregivers, and multiple linear regression was performed to analyze the related factors. Results:The score of physical component summary (PCS) of caregivers was (51.67±8.11), and the score of mental component summary (MCS) was (42.10±12.66). The scores of PCS were lower in caregivers with children aged 6 to 18 years (B = -1.783, 95%CI -3.279 to -0.287, P = 0.020), children with emotional instability (B = 2.719, 95%CI 1.254 to 4.184, P < 0.001), female caregivers (B = -3.765, 95%CI -6.578 to -0.953, P = 0.009), and caregivers who were relatively dissatisfied with the policy (B = 1.973, 95%CI 0.367 to 3.578, P = 0.016); and were higher in caregivers with children with speech disabilities (B = 3.463, 95%CI 0.053 to 6.873, P = 0.047). The types of disabilities of children (Bhearing = 9.465, 95%CI 5.107 to 13.823, P < 0.001; Bundetermined = 5.999, 95%CI 1.558 to 10.441, P = 0.008), playmates of children (B = 2.626, 95%CI 0.352 to 4.901, P = 0.024), education level of caregivers (Bhigh middle school = -4.701, 95%CI -8.028 to -1.374, P = 0.006; Bhigh school = -3.610, 95%CI -6.604 to -0.615, P = 0.018), family size (B = 2.616, 95%CI 0.479 to 4.753, P = 0.017) and per capita monthly income (B < 5000 Yuan= -6.572, 95%CI -9.136 to -4.008, P < 0.001; B5000 to < 10000 Yuan = -4.932, 95%CI -7.544 to -2.319, P < 0.001) were associated with the scores of MCS. Conclusion:The quality of life, especially the mental health, of caregivers of children with disabilities is poor. The influencing factors cover multiple dimensions such as caregivers, children, family and social environment.

Nutritional Status of Children with Disabilities in Developed Areas in China: a Case of Shanghai / 中国康复理论与实践

Objective:To explore the nutritional status and influencing factors among children with disabilities in developed areas. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 480 caregivers of children with disabilities aged two to 18 years in Shanghai were investigated their heights and weights, and the body mass index (BMI) was calculated. The influencing factors were analyzed from the dimensions of children's personal, family and social characteristics based on the Ecological System Theory. Chi-square test and binary Logistic regression model were used to analyze the influencing factors associated with the nutritional status of children with disabilities. Results:The prevalence of thinness, overweight and obesity in 480 children was 23.75%, 13.54% and 13.33%, respectively. Multivariate Logistic regression analysis showed that potato intake (OR = 0.420, 95%CI 0.197 to 0.893, P < 0.05) and caregivers' perception of child's weight (OR underweight = 4.188, 95%CI 1.488 to 11.787, P < 0.01) were associated with children's thinness. Types of disability (OR autism= 0.142, 95%CI 0.034 to 0.591, P < 0.01), the role of caregiver (OR father= 5.519, 95%CI 1.110 to 27.440, P < 0.05), and caregivers' perception of the child's weight (OR overweight = 5.669, 95%CI 1.112 to 28.903, P < 0.05) were associated with children's overweight/obesity. Conclusion:The prevalence of malnutrition among children with disabilities in Shanghai is higher than those typically-developing, especially thinness and obesity. The nutritional status is greatly affected by the type of disability, dietary intake and family characteristics.

Quality of Life and Influencing Factors for Children with Disabilities in Developed Areas in China: a Case of Shanghai / 中国康复理论与实践

Objective:To explore the current status of the quality of life of children with disabilities and its influencing factors. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 285 family caregivers of children with disabilities were enrolled in Shanghai. The EuroQol-5 Dimension Questionnaire Youth Version (EQ-5D-Y) was used to measure the quality of life of 285 children with disabilities. The impact of individual factors, caregiver factors, and environmental factors (family factors and social factors) on children's quality of life were analyzed using multiple linear stepwise regression analysis. Results:The score of Visual Analog Scale (VAS) was (71.66±22.33). The quality of life were poorer for children with physical disabilities (B = -13.623, 95%CI -25.282 to -1.965, P = 0.022) or multiple disabilities (B = -14.911, 95%CI -27.445 to -2.377, P = 0.020), combined diseases (B = -8.995, 95%CI -14.780 to -3.210, P = 0.002), emotional instability (B = -4.414, 95%CI -7.433 to -1.395, P = 0.004), poor partnerships (B = 4.965, 95%CI 1.748 to 8.181, P = 0.003), no pre-school education (B = -7.757, 95%CI -12.954 to -2.561, P = 0.004) and grandparents as the main caregiver (B = -7.999, 95%CI -14.288 to -1.710, P = 0.013). Conclusion:The quality of life for children with disabilities is relatively poor and influenced by multiple factors such as children's individual, caregivers, and environment. The main influencing factors are individual factors and caregiver factors.

Current Situation Analysis of Care Support Needs in Children with Disabilities: from a Comprehensive Rehabilitation Perspective / 中国康复理论与实践

Objective:To investigate the care needs and influencing factors for caregivers of children with disabilities. Methods:From December, 2019 to January, 2020, and August to September, 2020, a total of 496 family caregivers of children with disabilities were surveyed in Shanghai. The Care Needs Assessment Tool for Children with Disabilities was used to measure the care needs rates and satisfaction, and multiple linear regression was performed to analyze the related factors. Results:The rate of total need was 71.8%, which was high in the information support (83.7%), spiritual support (75.9%) and financial support (74.1%), and was at an intermediate level in alternative service support (62.9%) and professional support (62.2%). The satisfaction of total need was 39.4%, which was at a intermediate level in the spiritual support (50.8%) and professional support (45.5%), and was at a low level in alternative service support (32.8%), financial support (32.3%) and information support (30.3%). The caregivers needed less support for thoses with higher public policy satisfaction (B = -3.252, 95%CI -5.370 to -1.134, P = 0.003) and the children with vision and speech disability, and undetermined disability (Bvision disability= -12.160, 95%CI -21.976 to -2.344, P = 0.015; Bspeech disability= -12.754, 95%CI -22.583 to -2.925, P = 0.011; Bundetermined disability= -16.553, 95%CI -24.714 to -8.392, P < 0.001), while mothers (B = 9.071, 95%CI 4.293 to 13.848, P < 0.001) needed more support than grandparents. The caregivers with higher public policy satisfaction (B = 7.392, 95%CI 5.523 to 9.262, P < 0.001), the children with vision disability, hearing disability and speech disability (Bvision disability= 8.612, 95%CI 0.081 to 17.144, P = 0.048; Bhearing disability= 8.686, 95%CI 1.920 to 15.451, P=0.012; Bspeech disability= 9.515, 95%CI 1.184 to 17.846, P = 0.025), lower barriers to social inclusion (B = 1.932, 95%CI 0.457 to 3.408, P = 0.010) and shorter average daily care hours (B = -4.123, 95%CI -6.247 to -1.999, P < 0.001) were more satisfactory for support. Conclusion:The care needs of children with disabilities are diverse, with the highest rate of need for information support and the lowest level of satisfaction. There is some variation in the care needs of children with different types of disabilities, family roles, average daily care hours and social environment characteristics.

Prácticas sobre cuidado de niños con discapacidad construidas por cuidadores del Instituto de Capacitación Los Álamos

Introducción:La labor de cuidado de niños con discapacidad en primera infancia está mediada por muchos elementos, entre ellos, las prácticas. Dada la discapacidad y la edad de los niños, es habitual que sean sus cuidadores los responsables de su bienestar. Comprender las prácticas de los cuidadores permite optimizar e implementar rutinas funcionales, que propendan al bienestar y la calidad de vida de los niños y sus cuidadores. Objetivo: Comprender las prácticas de personas encargadas del cuidado a niños con discapacidad, de 1 a 6 años de edad, en el Instituto de Capacitación Los Álamos (Itagüí, Colombia). Método: Estudio cualitativo enfocado en la teoría fundamentada. Se invitó a participar 12 madres sustitutas del instituto, se realizó un muestreo a conveniencia hasta la saturación teórica. Resultados: Las prácticas se constituyen en rutinas de cuidado que incluyen actividades que son específicas para los niños con discapacidad, tales como masajes, terapias, adaptaciones del espacio para el posicionamiento y la participación, entre otros. Actividades como la alimentación y el masaje son igual de importantes a la hora del cuidado de un niño con discapacidad. Conclusión: El cuidado de niños con discapacidad supone la realización de múltiples actividades y diferentes prácticas específicas para la condición del niño. A pesar de lo difíciles que son, terminan estando inmersas en un compilado de rutinas que se incorporan al día a día de la familia.

Introdução: O trabalho de cuidar de crianças com deficiência na primeira infância é mediado por muitos elementos, incluindo práticas. Dada a deficiência e a idade das crianças, é comum que seus cuidadores sejam responsáveis por seu bem-estar. A compreensão das práticas dos cuidadores permite otimizar e implementar rotinas funcionais que promovam o bem-estar e a qualidade de vida da criança e de seus cuidadores. Objetivo: Compreender as práticas sobre o cuidado de crianças com deficiência física na primeira infância, construídas por cuidadores pertencentes ao Instituto de Capacitación Los Álamos. Método: Estudo qualitativo com foco na teoria fundamentada. Doze mães de aluguel foram convidadas a participar, sendo realizada uma amostragem por conveniência até a saturação teórica. Resultados: As práticas se constituem em rotinas de cuidado, que incluem atividades específicas para crianças com deficiência, como massagens, terapias, adaptações do espaço para posicionamento e participação, entre outras. Atividades como alimentação e massagem são tão importantes quanto ao cuidar de uma criança com deficiência. Conclusão: Cuidar de crianças com deficiência envolve a realização de múltiplas atividades e diferentes práticas específicas à condição da criança. Por mais difíceis que sejam, acabam imersos em uma compilação de rotinas que se incorporam ao dia a dia da família.

Introduction: Many elements, including practices, mediate the work of caring for children with disabilities in early childhood. As a result of the disability and age of the children, their caregivers commonly become responsible for their well-being. Understanding the practices of caregivers allows optimizing and implementing functional routines that promote the well-being and quality of life of children and their caregivers. Objective: To understand the practices of caregivers of children aged 1-6 years with disabilities at the Instituto de Capacitación Los Álamos (Itagüí, Colombia). Method: Qualitative study focused on grounded theory. The participants were twelve surrogate mothers from the institute; a convenience sampling was carried out until theoretical saturation. Results: The practices consisted of care routines, including activities specifically for children with disabilities such as massages, therapies, adaptations of the space for postural control and participation. Moreover, activities such as feeding and massages are equally important when caring for a child with a disability. Conclusion: Caring for children with disabilities involves multiple activities and practices specific to the child's condition. Despite their difficulty, they become immersed in a compilation of routines incorporated into the family's daily life.