Integrating parent voices into research at the extremes of prematurity: what are we doing and where should we go?

Abstract

When a baby is born premature, a landscape of potential problems replaces an imagined future. Outcomes become the measures of success. Researchers are recognizing that we need the direct input of parents to select meaningful outcomes. In this article, we describe how researchers and clinicians in neonatology have historically defined outcomes and the limitations of these methods. We chart the integration of stakeholders-patients and parents-into outcomes selection. 'Parent-important outcomes' are those deemed most important by parents, as the voices of their children. We outline a path toward determining parent-important outcomes in neonatology through mixed methods research. We conclude by suggesting how parent-important outcomes can be integrated into neonatal follow up research and clinical trial design. Ultimately, all researchers of prematurity aim in some way to improve outcomes that parents and patients care about. We hope this article will remind us of this beacon.