Families’ situation of caring for a child with a chronic condition: a mixed methods study

Maísa Mara Lopes Macêdo, Melissa Joice de Abreu Felizardo, Nayara Luiza Henriques, Sérgio Deodato, Elysângela Dittz Duarte

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Abstract

Objective: To analyze the meanings attributed by family members to the situation of caring for a child with a chronic condition (CCC), in the light of the Family Management Style Framework (FMSF). Method: A mixed-methods, parallel-convergent study, guided by the FMSF theoretical framework, using the conceptual component “Definition of the Situation”. Fifty-three CCC families took part. Data was collected using a semi-structured interview, a questionnaire to characterize the participants and a Family Management Measure scale. Descriptive and inferential statistical analysis was carried out on the quantitative data and the qualitative data was subjected to deductive thematic analysis. Results: Family members reported a view of normality in relation to CCC, also verified by the Child’s Daily Life scale. However, they indicate the repercussions of the chronic condition on the family, and that they devote more attention and time to meeting the child’s care needs, which was also verified in the View of the Impact of the Condition and Management Effort scales. Conclusion: Families have a positive view of the situation of caring for CCC at home, but point out some negative effects, such as the greater time spent caring for the child.
Translated title of the contributionSituação de cuidar de uma criança com condição crônica pelas famílias: estudo de métodos mistos
Original languageEnglish
Article numbere20230304
Number of pages9
JournalRevista da Escola de Enfermagem da USP
Volume58
DOIs
Publication statusPublished - 2024

Keywords

  • Family nursing
  • Pediatric nursing
  • Family
  • Child care
  • Chronic disease

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