Cultural modulation of family care for technology-dependent children: an ethnographic study

Abstract

Objective: To interpret the cultural modulation of family care for technology-dependent children in different contexts. Method: Ethnographic study with technology-dependent children, their families and people they live with, totaling 15 informants. Data collection took place from June/2019 to June/2020 in a municipality in southern Brazil, through participant observation, ethnographic interview, field diary, genogram, and ecomap. For the interpretation, the phases proposed by ethno-nursing were followed. Results: Families adapt and restructure based on their children’s needs. They use strategies that include adjustments to the physical environment, changes of residence, and constant efforts to ensure continuity of treatment. They depend on support from people outside the family nucleus, including schools and health services, to ensure care. Mothers are the primary caregivers while fathers act as providers. The school inclusion of children and the lack of listening were also highlighted as challenges. Conclusion: Families need to make cultural adjustments to overcome the challenges of care and improve the quality of life of technology-dependent children.