Desafios do familiar cuidador de crianças e adolescentes na convivência com a deficiência e quanto ao acesso aos serviços de saúde: estratégias educacionais para o apoio familiar

Abstract

Disabled children and adolescents naturally demand continuous and longitudinal care, requiring access to health services for comprehensive care. Living with a disability causes changes in the life and routine of the family caregiver, also placing them in need of care and support. Thus, the objective of this research is to know the challenges faced for the inclusion of children and adolescents with disabilities in health services, from the perspective of the family caregiver. Study with a mixed methods approach, carried out in a Specialized Educational Care Center, located in Palmas, Tocantins, Brazil, which offers educational support for students with disabilities and other disorders. In data collection, 49 family caregivers were interviewed. The data collection instruments employed, socioeconomic and demographic questionnaire (general data on family members and health of children and adolescents with disabilities), in-depth interview (experience lived by family members in accessing health services) and PCATool-Brasil in the Child Version Reduced (extension of essential and derived attributes of the APS). Qualitative data were submitted to content analysis and for quantitative data Fisher's exact test was used. The results indicated the main challenges faced by family caregivers: children with disabilities have more health needs; fear and anxiety regarding the treatment of children with disabilities; long waiting time for service in the network; lack of communication and access to information; lack of professional support; lack of involvement in decision-making; organizational barriers to accessing health services; lack of coordinated care with other points in the network, negative attitude on the part of professionals. It signals the design of a Primary Health Care (PHC) with fragmented and disjointed actions, with little guidance for the care of people with disabilities. It is concluded that the challenges of taking care of children and adolescents with disabilities impact family members in their lives in general, making them somehow more susceptible, as well as providing direct support for their children, emphasizing care and support. family members can contribute to improving the health situation of their children, through family support programs that favor inclusion and guarantee rights.