Integrating fathers' lived experience into neonatal care: Q&A with a consumer academic

In neonatal intensive care units (NICUs), parents play a critical role in helping their baby develop and stay well. Research shows this clearly, yet support and involvement for fathers is often overlooked, with most attention going to mothers medically. This project was set up to better understand and improve father involvement in the NICU. To make sure the research reflected real experiences, the team went beyond usual methods like steering committees and hired a father with lived NICU experience, Kabe Redfern, as a “consumer academic,” a paid role that treats personal experience as a genuine form of expertise on an ongoing basis.

Kabe’s own experience showed how easily fathers can be left out of NICU care after having two children born in the NICU. Kabe’s involvement in the research showed clear benefits. When other fathers heard from someone who had lived through similar experiences, they were more willing to open about a difficult topic. His presence also helped clinicians and researchers see the human story behind the project, which led to more open and useful conversations. Along with shaping the research question and overall direction. As a father with community connections, he was also able to help share and recruit more widely through hospital groups, consumer networks, and community events.

For researchers, fathers are more likely to take part in research when they are approached through people they already trust, such as mothers, nurses, workplaces, or community organizations. Offering fair compensation and flexible scheduling matters too, since most fathers are working full time. Services considering a consumer academic role should focus on what motivates a father personally and supports him to grow into the role, rather than expecting a traditional academic background. For clinicians, actively including fathers should become standard practice. This means using thoughtful language, explaining why an engaged father matters for his child’s and partner’s long-term wellbeing, and following up with fathers who cannot attend appointments in person through a phone call, email, video consult, or an out-of-hours meeting.