JMIR Publications

ABSTRACT

Background:

Premature infants are at increased risk of developing chronic disease, including chronic kidney disease (CKD). The risk of CKD in prematurely born infants is under-recognized by healthcare teams and caregivers. Understanding how to communicate the risk of CKD to caregivers is essential for longitudinal clinical follow-up and adherence.

Objective:

To determine caregiver attitudes toward kidney health and risk communication during a neonatal intensive care admission. We also sought to understand caregiver preferences for communication of information surrounding the risk of CKD in premature infants.

Methods:

We augmented standard qualitative group sessions with human-centered design methods to assess parent preferences and medical provider perspectives. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods.

Results:

Overall, 15 individuals (7 providers and 8 parents) participated in three group sessions. Parents and providers readily acknowledged barriers and benefits to long-term kidney monitoring as well as opportunities for communication of the risk of long-term kidney disease. Parents’ primary concerns were for both the type and depth of information conveyed as well as the time at which it was communicated. Both parents and providers emphasized the importance of collaboration between the team caring for the child during their admission and the primary care provider. Stakeholder input was synthesized into several prototype concepts and, ultimately, into a rough prototype of a website and an informational flyer.

Conclusions:

Families of premature infants are open to communication about kidney health during their neonatal admission. The next phase of this work will translate parents’ preferences into family-centered communication tools and test their efficacy in the neonatal intensive care unit.