“They take the mum off you when you come in

Abstract

Medication safety in healthcare settings is a persistent problem, and children may be at greater risk of harm than adults. Most existing research examining medication safety for hospitalised children is from the perspective of healthcare professionals and organisations. This study aimed to ethnographically explore parent and staff perspectives on the role of parents in medication safety in the paediatric hospital setting. Methods 230 hours of ethnographic observation and 19 semi-structured interviews with clinical staff and parents were conducted over paediatric wards in three acute hospitals in Northern England between October 2020 and May 2022. Data was organised and coded using NVivo and analysed thematically. Results Three main themes were identified; 1) Capacity and Capability: Parents were often assumed to be incompetent by organisational policies and managers but at the same time were co-opted to undertake medication processes to meet operational needs. Parental experience was often ignored or judged negatively. When things went wrong parents were sometimes blamed. 2) Communication: parents were seldom meaningfully involved in decisions about their children’s medication or provided with appropriate information unless requested. Parental medication histories were treated with suspicion and validated against inaccurate records; 3) Agency and Autonomy: parents often wanted to participate in their child’s care but were expected to be passive observers. Conclusions Medication safety for children is a social phenomenon involving healthcare professionals and parents. However, parents are often relegated to a passive role by healthcare staff. We posit that this represents an example of epistemic injustice in the way parents are assumed to be incompetent outsiders with no understanding of the medical care of their children, despite them offering resilience for medicines safety. We recommend further exploration of how parents contribute to resilience and safety for children in hospital and the barriers to this, and how health services can safely support increased engagement and involvement of parents in the care of their children while in hospital. Patient or public contribution Parents contributed to the analysis and interpretation of the data collection and have contributed to the preparation of the manuscript.