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.

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.