文章基本信息

标题：Experience of mothers in the care of children and adolescents with special health needs
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作者：Iven Giovanna Trindade Lino ; Patrícia Chatalov Ferreira ; Vanessa Carla Batista 等
期刊名称：Acta Scientiarum. Health Sciences
印刷版ISSN：1679-9291
电子版ISSN：1807-8648
出版年度：2020
卷号：42
页码：1-7
DOI：10.4025/actascihealthsci.v42i1.51311
出版社：Universidade Estadual de Maringá
摘要：To describe the family's experience in home care for children and adolescents with special health needs. Qualitative research supported by the theoretical framework of Patient- and Family-Centered Care, carried out in an Association that serves Children and Adolescents who need special health care in a municipality in the southern region of Brazil. Data were collected through semi-structured interviews with eight mothers of children and adolescents with special health care needs, which were recorded and transcribed verbatim, and subjected to content analysis in the thematic modality. Two categories were identified: Family reorganization to care for children with special health care needs at home; and Invisibility of the woman/mother. Caring for CSHCN at home imposes on families the need to reorganize themselves, so that the mother can dedicate herself, almost entirely, to this function, including neglecting health care. Despite this dedication, mothers do not recognize activities developed as difficult; however they make self-care invisible in relation to child care.
关键词：Chronic disease;caregivers;family nursing.