No abstract

Objectives: to identify aspects that can influence the types of bonds developed in the social support network of family members of children with special health care needs. Methods: qualitative research conducted through interviews with 15 family members/guardians in the city of Rio de Janeiro, from January to February 2020. Sanicola’s theoretical-methodological framework and Bardin’s thematic analysis technique were used. Results: social distancing, lack of responsibility for coordinating care, lack of supplies and lack of individualized care were weaknesses found in the families’ social relationships. However, the bonds were strengthened by the relationship of familiarity and availability of professionals in the care of children with special health needs. Final Considerations: understanding the configuration of primary and secondary social networks and the types of support offered can improve the care of children and strengthen bonds that provide security for families.

Objetivo: Identificar o conhecimento produzido sobre a percepção das famílias e de profissionais acerca da inclusão escolar de crianças com transtorno do espectro autista. Métodos: Trata-se de uma revisão integrativa da literatura publicada no recorte temporal de janeiro de 2016 a janeiro de 2020 nas bases de dados Literatura Latino Americana e do Caribe em Ciências da Saúde (LILACS) e Scientific Electronic Library Online (SCIELO). Resultados: Ainda há fragilidades na inclusão das crianças no ambiente escolar, o que gera sofrimento, estresse e preocupação para os familiares. A falta de uma formação acadêmica adequada reflete na escassez de profissionais qualificados para garantir a manutenção da criança na Escola. Considerações Finais: Constatou-se que há lacunas no conhecimento de familiares e profissionais sobre as formas de inclusão da criança com transtorno do espectro autista na escola necessitando de capacitação profissional para o suporte necessário à família e garantia da aprendizagem e bem-estar das crianças.

No abstract

Introduction The family life of a child with chronic illness is marked by several determinants and demands for care. Within that context, the greater the support received, the greater the resources available to face vulnerability, and to respond positively to guidance and care. Objectives describing the social network of families of children with chronic illness, and understanding the meaning of the relationship of the family caregiver with the members of his/her social network. Methods Qualitative research with nineteen relatives of children with chronic diseases at a rehabilitation center in the city of Rio de Janeiro, Brazil. The theoretical framework of Sanicola's social network was used. Data were collected in November 2019 by semi-structured interviews and analyzed using the content analysis technique. The research was approved by the Ethics and Research Committee of the participating institutions. The social network map showed the presence of few members and mothers as the main caregivers. The main problems among children were: autism, Down syndrome, cognitive disorders and cerebral palsy. Among the most involved people with the caregivers, friends, sisters and grandparents stood out as the ones who offered material, financial and emotional support. Rehabilitation unit support (secondary level) and dissatisfaction with the primary health unit were mentioned. Conclusions The social network of children with chronic illness is a small family network marked by social vulnerability and the female gender as responsible for care. It is noteworthy that the weakness in the relationship with health professionals at primary care level can compromise care continuity. Therefore, it is recommended to professionals to know the social network of the clientele served, as well as interacting and strengthening this network in order to provide more effective actions for health protection, rehabilitation and supported self-care strategies. Key messages Chronic childhood disease is a major public health problem. Being aware of social network favors the implementation of more actions toward health protection, rehabilitation and supported self-care strategies.