Exploring parents’ perspectives on health technology to support communication in home-based pediatric palliative care: a qualitative study

TL;DR

This study explores how parents of children in home-based palliative care view health technology, focusing on communication with healthcare providers and the role of digital tools in everyday life.

Contribution

The study provides novel insights into parents' perspectives on health technology in home-based pediatric palliative care, emphasizing usability, accessibility, and security.

Findings

Digital consultations help reduce disruptions to family routines.

Parents emphasize the need for simplicity and control over health information access.

Successful health technology requires co-design with families and healthcare providers.

Abstract

Children eligible for palliative care represent a highly diverse population, making comprehensive, family-centered approaches essential. As many families value being at home and maintaining their daily activities and routines, healthcare services need to be tailored to each family’s unique circumstances. Health technology offers promising support for home-based pediatric palliative care and has been suggested to enhance communication, coordination, and continuity of care. Despite growing interest, a significant research gap regarding the systematic integration of health technology into pediatric palliative care, particularly in understanding how digital tools can be meaningfully embedded into everyday life. Given this research gap, this study aimed to explore parents’ perspectives regarding the use of health technology in home-based pediatric palliative care, with a particular focus on facilitating communication with healthcare professionals.

This qualitative exploratory study was conducted with five focus groups comprising 18 Norwegian parents of children aged 1.5–18 years old with life-threatening or life-limiting conditions. Data were analyzed using reflexive thematic analysis.

Three themes were created in the analysis: (1) Digital consultations as tools for reducing disruptions to everyday life; (2) Who needs to know what? Balancing access and security in electronic health records; and (3) Keep the health technology simple.

Health technology has the potential to improve flexibility, reduce travel burdens, and support everyday life for families in which a child is receiving home-based pediatric palliative care. Its effectiveness depends on usability, integration with healthcare systems, and the parents’ ability to control access to their child’s health information. Ensuring both accessibility and security is essential for building trust in health technology. Successful implementation of health technology requires co-design with users and stakeholders to create sustainable solutions that meet the complex needs of children receiving home-based palliative care.

The online version contains supplementary material available at 10.1186/s12904-026-02006-2.

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