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March 14, 2026Revista da Sociedade Brasileira de Enfermeiros Pediatras0 citationsOpen Access

Vivências e estratégias de bem-estar de cuidadores de crianças com cardiopatia congênita

CMCarolina Fagundes MarcelinoCACarla Simone Leite de AlmeidaLALuana Cláudia Dos Passos AiresInstituto Federal de Educação, Ciência e Tecnologia de Santa Catarina

Key Result

Caregivers of children with congenital heart disease reported significant emotional impact characterized by fear and anxiety, and adopted various well-being strategies such as family support and self-care practices to cope with their challenges.

Key Points

  • The aim is to understand caregivers' perceptions and experiences related to congenital heart disease and their adopted well-being strategies.
  • Qualitative, descriptive, and exploratory study design
  • Involvement of 24 caregivers of children with congenital heart disease
  • Data collected through a semi-structured questionnaire
  • Data analyzed using Minayo's Thematic Analysis
  • Four main themes emerged from the data analysis
  • Initial impact noted upon diagnosis
  • Caregivers reported various strategies for coping and maintaining well-being

Study Design

Type

Observational (n=24)

Multicenter

No

Structured PICO

P
Population
24 caregivers of children with congenital heart disease (older than six months), hospitalized in the cardiology unit, who were the child's primary caregiver, and aged 18 years or older. Mean age 36 years, 92% female.
O
Outcome
Caregivers' perceptions and experiences regarding congenital heart disease and the well-being strategies adopted during the children's illness processpatient reported

Caregivers of children with congenital heart disease experience significant emotional burden and lifestyle changes, but utilize family support, spirituality, and self-care practices to maintain their well-being.

Limitations

  • Single point-in-time data collection during hospitalization, limits on evolution of caregiver perceptions over time.
  • Collected information at a single point in time during hospitalization, without tracking whether caregivers' perceptions evolved over time as they adapted to their lived reality.

Abstract

Resumo Objetivo Compreender a percepção e vivência dos cuidadores sobre a cardiopatia congênita e as estratégias de bem-estar adotadas no processo de adoecimento da criança. Métodos Estudo qualitativo, descritivo e exploratório, realizado com 24 cuidadores de crianças com cardiopatia congênita em um hospital público de Santa Catarina. Os dados foram coletados por meio de questionário semiestruturado, incluindo informações sociodemográficas e clínicas, e analisados com base na Análise Temática de Minayo. Resultados Emergiram quatro temas: (1) Impacto inicial com o diagnóstico: ...

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Cite This Study

Marcelino et al. (2025) conducted an observational in Congenital heart disease (n=24). Caregivers of children with congenital heart disease reported significant emotional impact characterized by fear and anxiety, and adopted various well-being strategies such as family support and self-care practices to cope with their challenges.

synapsesocial.com/papers/69b4fc59b39f7826a300d263https://doi.org/10.31508/1676-3793202503
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