Assessment of Caregivers and Their Children With Cancer Regarding Information Provided by Healthcare Teams: Advancing Stages Toward the Creation of a Structured Education Program at the National Level

Verónica De la Maza*, Virginia Fierro, Carolina Facusse, Daniela Carvajal, Tiare Pavez, Karen Méndez, María Barra, Juan P. Torres, Daniela Torres, Paz Moscoso, María Santolaya, Claudia Paris

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: The dissemination of information to caregivers of pediatric cancer patients in Chilean hospitals is now sporadic and contingent upon available time, underscoring the need for a systematic education program. This study assesses caregivers’ perceptions of the information provided by healthcare teams to support the development of a national education program tailored to their needs. Methods: A descriptive, prospective, multicenter study was conducted from June 2021 to March 2022 across six public hospitals in Chile. The study included caregivers of children undergoing cancer treatment. Caregivers completed a survey assessing the education received and their preferred educational methods. Data were analyzed using STATA 18 and Graph Pad 6.0, with qualitative responses analyzed through an iterative coding process. Results: Of 173 respondents, 94% rated the education received as very good or good. While 51% felt well-informed at hospital discharge, 28% desired more information. Caregivers preferred information from healthcare teams (88%), websites (55%), and written materials (51%). Significant differences were found in preferred educational content based on cancer type and the time elapses since diagnosis. Conclusion: Caregivers generally rated the education provided positively but expressed a need for more structured and targeted information. The findings inform the design of a national education program, emphasizing the need for tailored content and improved communication strategies to enhance caregiver support.

Original languageEnglish
Article numbere31577
Pages (from-to)e31577
JournalPediatric Blood and Cancer
Volume72
Issue number4
DOIs
StatePublished - Apr 2025

Bibliographical note

Publisher Copyright:
© 2025 Wiley Periodicals LLC.

Keywords

  • cancer
  • caregivers
  • children
  • education
  • oncology
  • parents
  • Caregivers/education
  • Prospective Studies
  • Follow-Up Studies
  • Humans
  • Middle Aged
  • Patient Care Team
  • Child, Preschool
  • Male
  • Neoplasms/therapy
  • Adolescent
  • Female
  • Adult
  • Surveys and Questionnaires
  • Chile
  • Child
  • Health Education

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