Guarantee of the social rights of children with chronic conditions: reinventing care towards civil rights

Abstract

Objective: To analyze the experiences of families in the exercise of the rights of children with chronic conditions in public health, education and social assistance institutions. Method: ethnographic multiple case study, with qualitative approach, following the theoretical approach of Boaventura Santos. Experiences of the families of these children in a city were studied through interviews with family members, managers and professionals from social institutions (35), participant observations in social spaces (13) and creation of eco-maps (3). Critical Discourse Analysis was performed. Results: the offer of services is lower than the demand, and exclusion processes persist. Given the hegemony of neoliberal and normality ideologies, meetings between family members and professionals revealed obstacles to civil rights; however, when these ideologies were challenged, the realization of their rights was enhanced. Final considerations: the care to promote civil rights requires family members, managers and professionals to develop subjectivities that overcome neoliberal and normality ideologies, recognizing these children as subjects of law.

Exploring the Landscape of Eco-Mapping in Health Services Research: A Comprehensive Review

“…Te CFAM is organized into the genogram and the eco-map tools, and there is a heavy emphasis on identifying strengths and weaknesses with the expectation of proposing interventional measures for families. Many authors suggested that through eco-mapping and understanding the family dynamics, bonds, and available sources of support [21,45,48,75,78,83,85,88,95,99,100,102], healthcare professionals can tailor their communication approaches and information [21,22]. With consistent updates, the tool was recognized as a helpful reminder of the available social resources for patients and family members [59,76,98,105].…”

“…Tese studies included the meaning of the lines and arrow directions connected to the center circle, indicating the nature of the interactions (e.g., positive, tenuous, conficted, etc.) [17,48,53,74,78,82,85,95], and two studies designated symbols and colours to represent the types of support received [80,103]. Authors of six studies mentioned that "computer software" (e.g., Edraw Mindmap, Dia, GenoPro, and Corel-DRAW) was used in the eco-map construction [41,51,52,65,84,91].…”

“…Some study authors reported their fndings on a broader system and cultural level. For example, the fndings from several studies highlighted the need for intersectoral and multiprofessional action by healthcare providers to identify existing and potential resources within larger networks of health and social care [22,50,63,85]. At the same time, another study asked about the dominant culture supporting minority cultures to achieve a sense of belonging [53].…”

“…At the same time, another study asked about the dominant culture supporting minority cultures to achieve a sense of belonging [53]. Last, several studies referred to public health and social policies and initiatives to support more vulnerable populations like older adults, children with chronic conditions, and employed mothers by bolstering "health promotion strategies" and resources [48,68,85,102].…”