Peer-reviewed article

Medication Safety In Pediatric Palliative Care: A Netnographic Analysis Of Online Discussions On Drug Delivery Errors And Concerns

Jestoni Dulva Maniago, Floreliz V. Ngaya-an, Oscar Maramag Turingan, BherlynJoy Leccio, Phildon Jonar M Austria et al. · 14 May 2026

Abstract

Pediatric palliative care has increasingly shifted from acute clinical settings to the home context, in order to optimize quality of life for children with life-limiting conditions and their families. While the premise of providing care to children in their homes promotes comfort for children and family cohesion, this mode of care also goes along with family members managing complicated medical tasks, often involving high-alert medications, such as opioids, sedatives, and chemotherapeutic agents. Safety is of paramount concern for those caring in home settings where the benefit of safety protocols to mitigate risk, or formal professional oversight, are absent. Whereas many safety reporting frameworks may be able to be applied to hospital settings, these systems often do not report on the complexities of drug delivery and medication safety, specifically in home environments. The present study utilizes a netnographic approach to understand how parents exchange their experiences in health communities and discussion forums because these online interactions serve as a platform when parents communicate about drug delivery errors and seek advice about their concerns regarding medications. Through an analysis of the digital narratives, we identify features of drug delivery errors, devices or equipment failing, and how safety incidents affected parents psychologically. Our analysis highlights how online communities serve as a "shadow safety system," where parents share informal strategies to mitigate risks and provide social support. Findings demonstrate the need for stepped up professional guidance and user-centered designs of medical devices or interventions for home care, along with a re-conceptualization of risk and safety frameworks suitable for the socio-technical nature of ppc at home. Our research presents a contribution to the field with a "critical counter-narrative" to traditional safety data in hospitals and highlights the importance of digital health literacy as an essential part of safety in the context of patient safety.