Cuidado domiciliar à criança com necessidades especiais de saúde: características dos serviços em cinco estados brasileiros, organização do fluxo hospital-domicílio e a percepção dos familiares sobre o cuidado recebido

Abstract

Technological development and the qualification of health professionals, in recent decades, have influenced the increase in children's survival rates, with children with special health needs emerging, which could be managed in home care, however, the lack of protocols have hindered their dehospitalization. Objective: To understand the scientific evidence on the organization of care, describe how this has been offered in five Brazilian states, with a view to validating a care flow protocol for children with special health needs in home care, modalities two and three, and understanding the caregivers' perceptions regarding the care received. Methodology:Study of multiple methods, quantitative-qualitative, descriptive and exploratory, methodological, protocol validation. Quantitative for describing services in five Brazilian states and for instrument validation analysis and qualitative for understanding the care received in home care and for analyzing the scoping review. Data collection for the validation study and description of online services using an electronic form, with health professionals from home care services in five Brazilian states. For scoping review, in online databases, the Joanna Briggs Institute methodology was adopted. To understand the care received, a semi-structured face-to-face interview was used with the children's families. Data analysis was performed using descriptive statistics for quantitative data and inductive thematic analysis for qualitative data. Results: In validating the flowchart, the first evaluation of the instrument brought 24 (77%) of the 31 items with 80% agreement. After the adjustments indicated by the judges, in the second round, eight of the 11 items with previous low agreement had a content validity index of 100% and three of 83.3%. Cronbach's alpha was 0.789, considered substantial, and the Kappa coefficient was 83.64%, classified as excellent. In the description of the services, among the 52 participants, 115 children are served, with an average age of 4.8 years, 88 (76.52%) are classified as home care level 2 and the most common diagnosis was neurological diseases (40; 22.22%). The main care demands are food, medication and airway maintenance. Caregivers perceive as positive points of home care the conduct of treatment at home and the ease of access to care, supplies and medications. The literature review produced three themes on the organization of care, including 18 articles. The findings indicate that the dehospitalization of children with special health needs is impacted by aspects related to fragmentation in professional performance during the discharge process, unpreparedness for care with technological health devices and family insecurity regarding the continuity of care after discharge. Conclusion: This research demonstrated the characteristics of home care for children with special health needs and contributes to their organization and efficient care, with potential cost savings, as well as to technological development, as it presents innovative care organization technology, in addition to give family members a voice about their perception of the care received