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

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.