Parental and Staff Experiences of Participation in the REPORT-BPD Feasibility Study: Insights from an Embedded Qualitative Research

TL;DR

This study explores how parents and healthcare staff experienced a neonatal research trial, finding that trust and communication are key to successful engagement.

Contribution

The study provides novel insights into the emotional and logistical challenges of neonatal research from both parents' and staff's perspectives.

Findings

Parents understood the study and felt confident in its safety, while healthcare professionals had inconsistent awareness.

Both parents and staff valued participation but faced emotional and logistical challenges in the neonatal unit.

Sustained communication and family-centred strategies are essential for ethical recruitment and data quality in neonatal research.

Abstract

What are the main findings?

Parents exhibited a clear understanding of the study’s aims and procedures and expressed confidence in its safety, whereas healthcare professionals displayed inconsistent awareness.

Both parents and staff valued participation, highlighted emotional and logistical challenges in the neonatal unit environment, and offered practical suggestions to improve future neonatal research engagement.

What are the implications of the main findings?

Sustained, multi-directional communication is essential to maintain staff engagement and ensure consistent understanding across all research stakeholders.

Embedding family-centred, emotionally supportive strategies—such as structured reflective tools and timely feedback—can enhance ethical recruitment, retention, and data quality in future neonatal feasibility trials.

Background/Objectives: Family-centred care is key in neonatal practice, yet parents’ and staff’s research experiences are understudied. This study aims to explore their perspectives to improve inclusiveness, communication, and effectiveness in future neonatal research design and implementation. Methods: This embedded qualitative study, conducted within the Right vEntricular function applicability in a Prediction mOdel to identify pReterm infanTs with early BronchoPulmonary Dysplasia (REPORT-BPD) feasibility study, employed a qualitative descriptive design. The sample included 10 healthcare professionals, evenly split between medical and nursing backgrounds, and 10 parents, equally distributed between mothers and fathers of preterm infants enrolled in the REPORT-BPD study. Data were collected through audio-recorded semi-structured interviews, then transcribed into Word, and imported into NVivo 14 for thematic analysis by three researchers. Results: The following four main themes were developed from 11 sub-themes that were initially extracted: (1) Trust and Assurance in the Study, reflecting the overall trust between parents and staff, emphasising its perceived study’s safety and minimal impact on the infant. (2) Emotional and Psychological Considerations, highlighting the emotional landscape of parents, including their anxieties, stressors, and support systems that help ease their concerns. (3) Communication and Engagement, underscoring the importance of effective communication and engagement between researchers and study participants. (4) Value from Participation and Constructive Feedback, capturing the dual focus on the value participants gain from their involvement in the study, and their constructive suggestions. Conclusions: This study highlights trust, communication, and emotional impact in neonatal research, emphasising ethical, family-centred design to improve engagement and recruitment in future studies.