Cuidado realizado pela equipe do serviço de atenção domiciliar às crianças com necessidades especiais de saúde e suas famílias

Abstract

Home Care (HC), considered a health care modality, has dehospitalization as its central axis, and considers home care a strategy that guarantees the continuity of health care. It requires from the professionals the insertion of knowledge and practices in care planning, recognition of family values, and insertion of the family in order to consider it as the main care unit, in order to enable and strengthen it for the management of health care at home. The objective was to describe, from the perspective of family members, the process of home care performed by professionals of the Home Care Services (SAD) to Children and Adolescents with Special Health Care Needs (CHILD) and their families. This is a descriptive and exploratory study, with a qualitative approach. Its theoretical and philosophical framework is the Family-Centered Care Model. Data collection took place in the city of Campo Grande, state of Mato Grosso do Sul, in the first semester of the year 2021. It was done in person, through interviews with semi-structured instruments with the families of CHCN, enrolled in the municipality's HCS. The data was analyzed using inductive thematic analysis. Eight families participated in the study. The results show children with ages ranging from one year to 10 years old, belonging to AD2 and AD3. They demand psychomotor and social rehabilitation care, use technologies and drugs of continuous use as well as modified habitual care at home. The families elect the mothers as the main family caregiver. They experience family reorganization, financial impact, overload, feelings of fear and anguish to the point of doubting their own effectiveness in the care process. Although the families recognize the relevance of the care offered by HCS professionals at home, the care is configured in a disjointed way, due to the devaluation that is given to the families' knowledge, which makes them not feel heard in their needs and, consequently, they distance themselves from the professionals. The health services accessed by families in the care process are identified as fragmented and disconnected from the needs of the child, and disintegrated from other components of the Health Care Networks. Families access support networks, identified as primary and secondary social networks, for support in care demands, sharing information, clarifying doubts and sharing the burden. We conclude that it is necessary to take measures to train professionals to approach children and their families in the care process; to implement a family-centered care model; to establish flows that recognize children throughout the Health Care Network; to include specialties in the teams working in the HCS; and to promote spaces for the strengthening of families in decision making for care. These suggested measures should guarantee the resolution of the needs of children and their families as well as ensure the integrality of care. May this study bring subsidies for the construction of public health policies aimed at children with special health needs and their families in their living conditions.