Maternal daily care practices for children with congenital heart disease at home

Authors

DOI:

https://doi.org/10.5902/2179769285955

Keywords:

Mothers, Heart Defects, Congenital, Child, Nursing, Empathy

Abstract

Objective: to analyze maternal care practices in daily activities for children with congenital heart disease at home. Method: descriptive study, with a qualitative approach, carried out in the city of Rio de Janeiro, Brazil. Thirteen mothers of children with congenital heart diseases participated. The interviews took place between March and June 2016, which were audio-recorded, transcribed in full and submitted to Bardin's Content Analysis. Results: the daily activities of the children with heart disease were considered restricted and not restricted. Mothers compared their children with normal children, strategies are used during play to reduce physical effort and understand that the school environment and daycare favor good growth and development. Conclusion: passive games are better tolerated by mothers because they do not require physical effort. Thus, they prevent cardiac decompensation and aggravation of the disease in their children.

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Author Biographies

Flavia Melo de Castro, Federal University of Rio de Janeiro

Nurse. Graduated and licensed by the University of Grande Rio (2006). Specialist in Neonatal Nursing from the Severino Sombra University (2011) and Master in Nursing from the State University of Rio de Janeiro - UERJ (2016). Currently, PhD student in Nursing in the Stricto Senso postgraduate course at the Anna Nery School of Nursing at the Federal University of Rio de Janeiro (EEAN / UFRJ) in the research line Child and Adolescent Health. Member of the Nursing Research Group on Newborn and Family Health registered in the CNPq directory. She worked as an assistant professor I at Estácio de Sá University (2016 to 2022) in care and theoretical practice in the disciplines Child and Adolescent Health, Pharmacology in Nursing and Health of the Elderly Adult and in internships in Child and Adolescent Health, Public Health, Women's Health and High Complexity and at the Augusto Mota University Center (2022) in the discipline Primary Care Practices in Nursing. It has adherence in the area of ​​​​pediatric and neonatal Child Health. Works mainly on the following topics: teaching, students, nursing, congenital heart disease, newborn, at-risk newborn and parental stress in the Neonatal Intensive Care Unit (NICU).

Sandra Teixeira de Araujo Pacheco, Rio de Janeiro State University

Nurse, PhD in Nursing from the Anna Nery School of Nursing/UFRJ (2009). Master's degree in Nursing from the School of Nursing at UERJ. Permanent Professor of the Postgraduate Program of the School of Nursing at the State University of Rio de Janeiro. Associate Professor of the Department of Maternal and Child Nursing of the School of Nursing at UERJ. Pro-scientist at UERJ. Leader of the Research Group: Caring for People's Health: philosophical and bioethical aspects/UERJ and Member of the Research Group Nursing in child and adolescent health/UFRJ/EEAN. Participates as an ad-hoc reviewer for several national journals. Has published several articles in national scientific journals. Develops research in the area of ​​child health with emphasis on Children with Special Health Needs (CRIANES). Supervises theses, dissertations, scientific initiation research and course completion work (lato sensu specialization and undergraduate studies).

Marialda Moreira Christoffel, Federal University of Rio de Janeiro

She holds a degree in Nursing from the State University of Ceará (1987), a Master's degree in Nursing from the Federal University of São Paulo\UNIFESP (1994) and a PhD in Nursing from the Federal University of Rio de Janeiro (2002). Post-doctorate at the Ribeirão Preto School of Nursing - EERP-USP. World Health Organization Collaborating Center for the Development of Nursing Research. She is an ad hoc consultant for nursing journals. She is currently Associate Professor 4 of the Undergraduate Nursing Course at the Macaé Campus\RJ and Permanent Professor at the Postgraduate Anna Nery School of Nursing at the Federal University of Rio de Janeiro. She has experience in care, teaching and research in the areas of newborn health, child health, school health, neonatal nursing and pediatric nursing with an emphasis on translating knowledge into newborn care and development in the following topics: breastfeeding, neonatal unit environment, developmental care, pain management, posture and positioning, family, rooming-in, care practices, intravenous therapy, educational and information technologies, health promotion and education. She coordinates an extension and research project. Member of the Board of Directors of the Center for Nursing Research in Child and Adolescent Health (NUPESC\DEMI\EEAN). Founding member of the Academic League of Neonatal and Pediatric Nursing/LANP-Macaé Campus. She coordinates the Research Group on Nursing of the newborn and their family/GPESRENF/CNPq. Coordinator of REd ENSI Brazil. Gael's grandmother.

Emília Gallindo Cursino, Fluminense Federal University

PhD in Health Care Sciences from the School of Nursing of the University of São Paulo (EEUSP). Master in Nursing from the School of Nursing of the State University of Rio de Janeiro - UERJ. Specialist in Public Health Education from the Institute of Community Health of the Fluminense Federal University - ISC / UFF. Bachelor in Nursing from the Federal University of Bahia - UFBA, qualified in Public Health Nursing from the Federal University of the State of Rio de Janeiro - UNIRIO. Retired Associate Professor of the Aurora de Afonso Costa School of Nursing of the Fluminense Federal University (EEAAC / UFF) (1981-2021). She worked in the undergraduate discipline, Child and Adolescent Health in the Department of Maternal-Child and Psychiatric Nursing. Permanent Professor of the Academic Program in Health Care Sciences (PACCS / EEAAC / UFF), 2017-2021), currently she is a collaborating professor. He worked in the area of ​​​​Child and Adolescent Health, with an emphasis on Nursing in Public Health, Care in the Sociocultural Context, Health Promotion, Primary Health Care. Researcher at the Center for Epidemiological Studies from the Perspective of Nursing in Public Health (NEPESC, EEUSP) 2008 - 2018). Leader of the Center for Research and Studies in Comprehensive Health of Children and Adolescents (NUPESICA) from 2013-2021). Currently a researcher at the Center for Research and Studies in Comprehensive Health of Children and Adolescents (NUPESICA). She worked as a monitor in pedagogical training for the implementation of the PSF in the state of Rio de Janeiro from 1998 to 2002. In the university administration, she held the position of deputy head of the Department of Maternal-Child and Psychiatric Nursing and Vice-Coordinator of the Undergraduate Course in Nursing and Licentiate of the EEAAC/UFF. She was a full member of the EEAAC Unit Board. She is currently a member of the Brazilian Society of Pediatric Nursing (SOBEP).

Elisa da Conceição Rodrigues, Federal University of Rio de Janeiro

Elisa da Conceição Rodrigues has a degree in Nursing and a qualification in Obstetrics from the Anna Nery School of Nursing/UFRJ (1991), a specialist in maternal and child nursing from the Fernandes Figueira Institute/FIOCRUZ (1992), a specialist in pediatric nursing from EEAN/UFRJ (1996), and a master's degree in nursing from EEAN/UFRJ (2000). She holds a PhD in science from the Fernandes Figueira Institute/FIOCRUZ (2008). She holds a post-doctorate from the Federal University of Ceará, with a junior post-doctorate scholarship from CNPq. (2015). She was president of the Brazilian Society of Pediatric Nurses (SOBEP) from 2012 to 2015. Coordinator of the Lato-Sensu Specialization Courses at the Anna Nery School of Nursing (2016-2018), occasional substitute (2018-2020) and pro-tempore coordinator of this coordination (2020-2021); Coordinator of the Nursing Residency in Family Health at EEAN/UFRJ (2016-2021); Founding member of the Rio de Janeiro Patient Safety Center (2014). She is currently Associate Professor IV of the Department of Maternal and Child Nursing at the Anna Nery School of Nursing/UFRJ, working in undergraduate and graduate teaching lato and strictu sensu; second leader of the Nursing Research Group on Newborn and Family Health; member of the Board of Directors of the Center for Nursing Research in Child and Adolescent Health (NUPESC); Advisor to the Commission for Postgraduate Teaching and Research in Nursing at EEAN/UFRJ (2022-2024); Member of the Titling Committee of the Brazilian Society of Pediatric Nurses; Member of the Technical Group on Breastfeeding of the State Department of Health of Rio de Janeiro; member of the International Baby Food Action Network (IBFAN); Second Treasurer of ABENFO-RJ (2022-2024); Consultant for the Group Women Supporting Women in Breastfeeding (Grupo MAMA); Founding member of the Network for the Promotion, Protection and Remote Support of Breastfeeding in the Countries of the Portuguese-Speaking Community (2022); Evaluator of the Baby-Friendly Hospital Initiative, certified by the Ministry of Health (2023); Ad hoc consultant for scientific journals; Member of the Mothers for Diversity Group since 2021. Has experience in care, teaching and research in newborn health, child health, neonatal nursing and pediatric nursing, working mainly on the following topics: neonatal care focused on development, breastfeeding, kangaroo method, neonatal and pediatric intensive care, intravenous therapy.

Juliana Rezende Montenegro Medeiros de Moraes, Federal University of Rio de Janeiro

She holds a degree in Nursing from the Federal University of Rio de Janeiro (2000) and a PhD in Nursing from the Federal University of Rio de Janeiro (2009). She is currently an Associate Professor at the Anna Nery School of Nursing, where she works in undergraduate, extension and stricto and latto sensu postgraduate courses. She is a permanent professor in the Stricto Sensu Postgraduate Program at the Anna Nery School of Nursing at UFRJ. She is the leader of the CRIANES Research Group, linked to the CNPQ. She is a member of the Brazilian Society of Pediatric Nurses and a member of the International Network of Nursing in Child Health (Red Ensi). She has experience in Pediatric Nursing, with an emphasis on the theme of children with special health needs (CRIANES), working mainly in the following areas: nursing, pediatric nursing, child health, child health and social network.

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Published

2024-08-19

How to Cite

Castro, F. M. de, Pacheco, S. T. de A., Christoffel, M. M., Cursino, E. G., Rodrigues, E. da C., & Moraes, J. R. M. M. de. (2024). Maternal daily care practices for children with congenital heart disease at home . Revista De Enfermagem Da UFSM, 14, e12. https://doi.org/10.5902/2179769285955

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Vol. 14 (2024): Artigos do volume 14

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Artigos Originais

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