Therapeutic Journeys of family members of children with Congenital Zika Syndrome in the metropolitan region of Salvador/Bahia
DOI:
https://doi.org/10.23925/2176-2724.2022v34i1e54103Keywords:
Zika Virus Infection, Microcephaly, Delivery of Health CareAbstract
Introduction: The living and health conditions of children with Congenital Zika Syndrome (CZS) are an important public health issue. Neurodevelopment changes impact family life and imply multi and interdisciplinary care. Therefore, studies on the therapeutic journeys of family members in search for health care and education are needed. Objective: To investigate the therapeutic journeys of family members of children with SCZV in the metropolitan region of Salvador/Bahia. Methods: Descriptive and cross-sectional study with a qualitative approach, including recording, transcribing and analyzing videos of interviews with eight family members. The following thematic axes were defined: knowledge and impact of diagnosis, search and support in healthcare and educational inclusion. Results: Most family members became aware of the diagnosis of CZS only after the birth. All received guidance and referrals, mainly from public health professionals. The children were referred to different specializations and received priority assistance. Some participants reported anguish receiving the diagnosis, changes in dynamics and family life, long waiting for a wheelchair, difficulties to access specialized institutions due to distance and lack of transportation, and problems in educational inclusion due to the lack of classroom assistants. Most family members reported having support from relatives and friends. Conclusion: The findings show the impacts of therapeutic journeys on the lives of these families and the difficulties faced due to the effects on the neurodevelopment of children in search for assistance. The results suggest the need to formulate public policies in line with the needs of these children.
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Copyright (c) 2022 Ana Carolina Girardo, Paula Mello Pereira Passos, Regina Yu Shon Chun
This work is licensed under a Creative Commons Attribution 4.0 International License.
