Perceptions and self-care practices of children and adolescents with osteogenesis imperfecta

a qualitative study

Authors

Keywords:

Pediatric Nursing, Child, Adolescent, Osteogenesis Imperfecta, Self Care

Abstract

Objective: To understand the perception and self-care practices among children and adolescents with osteogenesis imperfecta.

Method: A qualitative, descriptive study carried out with 14 children and adolescents at a public referral hospital in Brasília, between August 2024 and June 2025, using the Creativity and Sensitivity Dynamics–Body-Knowledge and thematic analysis.

Results: The thematic analysis revealed three categories: (1) activities that promote self-care and participation; (2) recurrent fractures and functional limitations; and (3) activities that sustain self-care.

Final considerations: Even in the face of the restrictions imposed by the disease, the children report strategies of protection, pain management, adaptations to the environment, and organization of activities to reduce risks and preserve autonomy and well-being.

Author Biographies

Tayane de Jesus Resende, University of Brasilia, Brasilia, DF, Brazil.

Nurse. Resident in Cardiovascular Nursing, University of Brasilia, Brasilia, DF, Brazil.

Lara Mabelle Milfont Boeckmann, University of Brasília, Brasília, DF, Brazil.

Nurse. PhD in Nursing, Professor at the University of Brasília, Brasília, DF, Brazil.

Fabíola Mara Gonçalves de Siqueira Amaral, University of Brasília, Brasília, DF, Brazil.

Nurse. PhD candidate in Nursing, Professor at the University of Brasília, Brasília, DF, Brazil.

Luciene Rodrigues Barbosa, University of Pernambuco, Pernambuco, PE, Brazil.

Nurse. PhD in Sciences, Professor at the University of Pernambuco, Pernambuco, PE, Brazil.

Rita de Cassia Melão de Morais, University of Brasília, Brasília, DF, Brazil.

Nurse. PhD in Nursing, Professor at the University of Brasília, Brasília, DF, Brazil.

References

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Published

2026-09-17

How to Cite

Resende, T. de J., Boeckmann, L. M. M., Amaral, F. M. G. de S., Barbosa, L. R., & de Morais, R. de C. M. (2026). Perceptions and self-care practices of children and adolescents with osteogenesis imperfecta: a qualitative study. Cogitare Enfermagem, 31. Retrieved from https://revistas.ufpr.br/cogitare/article/view/102641

Issue

Vol. 31 (2026)

Section

Original Articles

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Copyright (c) 2026 Tayane de Jesus Resende, Lara Mabelle Milfont Boeckmann, Fabíola Mara Gonçalves de Siqueira Amaral, Luciene Rodrigues Barbosa, Rita de Cassia Melão de Morais

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