CN5 - Journeying through the landscape of home-based pediatric cancer care: Needs and expectations from the insights of children and parents

Background

The home care journey for children with cancer and their parents presents unique challenges that require attention. Despite this, there is limited evidence on home-based pediatric cancer care. This study aims to explore the experiences and expectations of children with cancer and their parents during home care.

Methods

This qualitative study was conducted with children aged 8-18 years with cancer and their parents in the pediatric oncology ward of a university hospital. Purposive sampling was used to reach potential participants and obtain rich data related to the research question. The data were collected between November 2022 and April 2023 through the “Characteristic Information Form” and “Semi-Structured Interview Form”. Interview recruitment continued until the researchers revealed that the collected data no longer yielded new information. A total of 18 children with cancer and 18 parents participated in the semi-structured interviews. The data was analyzed using a comprehensive reflexive thematic analysis. Several strategies were implemented to enhance the study's trustworthiness and confirmability. The theoretical framework of this study is based on Psychological Empowerment Theory. The Consolidated Criteria for Reporting of Qualitative Research (COREQ) checklist was adhered to in reporting the study.

Results

In the study, eighteen children with cancer and eighteen parents (15 mothers, 3 fathers) participated. The mean age of the participating children was 12.50±3.05 years, and 55.6% were girls. Leukemia was diagnosed in 30% of the children, and the mean duration of treatment was 5.94±3.07 months. The mean age of the parents was 37.16±4.98 years. Two main themes and five sub-themes were identified. These main themes are titled; Navigating Challenges in Home-Based Pediatric Cancer Care and The Lighthouse of Empowerment: Guiding Support for Children and Their Families.

Conclusions

The findings highlight the comprehensive challenges and empowerment needs of children with cancer and their parents during home-based pediatric cancer care. This study may provide evidence-based insights into the scope and content of home-based pediatric cancer care and provide implications for health policy.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

Has not received any funding.

Disclosure

All authors have declared no conflicts of interest.