Neves Eliane Tatsch, Silva Júlia Heinz da, Goi Cíntia Beatriz, Kaiser Caren Bertoldo, Machado Thamyres de Lima, Wilhelm Laís Antunes
Universidade Federal de Santa Maria, Programa de Pós-graduação em Enfermagem, Santa Maria, RS, Brazil.
Universidade Federal de Santa Catarina, Programa de Pós-graduação em Enfermagem, Florianópolis, SC, Brazil.
Rev Esc Enferm USP. 2025 Jul 7;59:e20240356. doi: 10.1590/1980-220X-REEUSP-2024-0356en. eCollection 2025.
To interpret the cultural modulation of family care for technology-dependent children in different contexts.
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.
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.
Families need to make cultural adjustments to overcome the challenges of care and improve the quality of life of technology-dependent children.
解读不同背景下对技术依赖型儿童家庭护理的文化调节。
对技术依赖型儿童、他们的家庭以及与之共同生活的人进行人种志研究，共有15名 informant。2019年6月至2020年6月期间，在巴西南部的一个城市通过参与观察、人种志访谈、田野日记、系谱图和生态图进行数据收集。在解读过程中，遵循了民族护理提出的阶段。
家庭根据孩子的需求进行调整和重组。他们采用的策略包括对物理环境的调整、居住地的改变以及为确保治疗连续性而不断做出的努力。他们依靠家庭核心之外的人（包括学校和卫生服务机构）的支持来确保护理。母亲是主要照顾者，而父亲则充当提供者。儿童融入学校以及缺乏倾听也被视为挑战。
家庭需要进行文化调整，以克服护理挑战并提高技术依赖型儿童的生活质量。
