AUTONOMY WITH SAFETY

SELF-CARE PRACTICES IN PEDIATRIC OSTEOGENESIS IMPERFECTA

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Authors

DOI:

https://doi.org/10.56579/rei.v8i3.3031

Keywords:

Osteogenesis Imperfecta;, Self Care, Child, Hospitalized, Comprehensive Health Care

Abstract

Introduction: Children with osteogenesis imperfecta (OI) face the challenge of reconciling safety and autonomy in daily life. Objective: To understand the meanings, practices, and strategies of self-care among children and adolescents with OI. Methods: Descriptive, cross-sectional, qualitative study conducted at the University Hospital of Brasília (Aug/2024–Jun/2025) with eight participants (6–15 years). Data collection comprised a sociodemographic questionnaire and audio-recorded semi-structured interviews; lexical analysis was performed using IRaMuTeQ (Descending Hierarchical Classification, similarity analysis, and Correspondence Factor Analysis), triangulated with analytic reading. Results: Four categories emerged: (1) meanings of health and self-care; (2) needs, rules, and therapeutic routines; (3) negotiation of risk and autonomy in Activities of Daily Living (ADLs) and leisure; and (4) experiences of hospitalization and support network. The narratives indicate self-care as a situated practice co-produced by children, family members, and the care team, guided more by participation (school, play, task performance) than by strictly biomedical markers. Final considerations: Environmental adaptations, adapted physical activity, and structured health education—organized as “rules and routines”—function as practical supports to enhance functional performance and maintain safe autonomy.

 

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Author Biographies

Tayane de Jesus Resende, University of Brasília

Nursing student at UnB (University of Brasília). Experience as a participant in UnB’s PEACs: LAETE (Academic League of Urgency and Emergency), LAPED (Academic League of Pediatrics), LADEC (Academic League of Scientific Dissemination and Education), SAEE (Systematization of Nursing Care in Enterostomal Therapy), RONDON Project 2023, and Student Mentorship Project.

Lara Mabelle Milfont Boeckmann, University of Brasília

She is an Assistant Professor at the University of Brasília – UnB. She completed postdoctoral studies at the Federal University of Pernambuco (UFPE – Brazil) and at the University of Granada (UGR – Spain) from 2024 to 2025. She holds a PhD in Nursing from the University of Brasília (UnB) – 2016, including a Sandwich Doctorate at University College London (UCL) in 2015. She has been an “Ad Hoc” reviewer for national and international scientific journals since 2017. She is Vice-Coordinator of the Extension Project Humanization of Childbirth and Birth League. She supervises undergraduate final papers, scientific initiation, and graduate-level research. She develops research in the areas of Women’s Health, Maternal and Child Health, Patient Safety, and Research Methodologies.

Fabíola Mara Gonçalves de Siqueira Amaral, University of Brasília

PhD candidate in the Graduate Program in Nursing at the University of Brasília (PPGENF-UnB), Master’s Degree in Health Sciences Teaching (2018) from the Federal University of Rondônia, specialization in Advanced Life Support: Emergency and ICU (2009) from the University of Pernambuco, and Bachelor’s Degree in Nursing from the Federal University of Mato Grosso (2005). Has experience in healthcare practice, management, and academia, with emphasis on Pediatric and Neonatal Nursing. Conducts research mainly on the following topics: care for newborns in Neonatal ICUs and their families, prematurity, and the humanization of nursing care.

Luciene Rodrigues Barbosa, University of Brasília

PhD in Sciences (EPE/UNIFESP) and Master’s Degree in Nursing (UnG). She is a professor in the Department of Nursing at the University of Brasília (UnB).

Rita de Cassia Melão de Morais, University of Brasília

She holds a Bachelor’s Degree in Nursing from the School of Nursing of the University of São Paulo (EEUSP), as well as a Master’s Degree and PhD in Nursing from the Anna Nery School of Nursing (EEAN) at the Federal University of Rio de Janeiro (UFRJ). She is currently an Associate Professor Level I in the Department of Nursing at the University of Brasília (UnB). She has experience in the field of Nursing, with emphasis on Child and Adolescent Health Nursing, working mainly on the following themes: pediatric nursing, hospitalized children, children with chronic health conditions, and families.

References

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Published

2026-05-25

How to Cite

Resende, T. de J., Boeckmann, L. M. M., Amaral, F. M. G. de S., Barbosa, L. R., & Morais, R. de C. M. de. (2026). AUTONOMY WITH SAFETY: SELF-CARE PRACTICES IN PEDIATRIC OSTEOGENESIS IMPERFECTA. Interdisciplinary Studies Journal, 8(3), 01–12. https://doi.org/10.56579/rei.v8i3.3031

Issue

Vol. 8 No. 3 (2026): REVISTA DE ESTUDOS INTERDISCIPLINARES

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ARTICLES

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