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On team calls, we’ve been discussing the importance of representing the parent voice in our work. This seems intuitive: If parents are the end users of our services, shouldn’t we be interested in their satisfaction and perspective of that care? If we aim to provide great care (think five stars), how do we define great care? Shouldn’t we ask those receiving the care if they felt it was great, and if not, why?
Admittedly, there is more to quality improvement work than solely adopting evidence-based clinical best practices. There is also the patient side of our work, and that side is often put far down on the priority list or not addressed at all. The voice of the parent can be incredibly valuable and make the improvements you are striving for much more robust and meaningful.
The Institute for Patient and Family-Centered Care provides a framework for family involvement in quality improvement work.
Level I: Families complete surveys or engage in other evaluative activities as respondents. Some teams are using discharge follow-up phone calls to obtain information from parents of late preterm infants about their hospital experience and whether they felt prepared to take their infant home. Providing an opportunity for families to share their experiences can lead to a better understanding of the healthcare system and identify opportunities for improvement.
Level II: Family advisory councils serve as a resource to the quality improvement team. In many hospitals, the NICU may be the only unit that maintains a Family Advisory Council. However, developing a Perinatal Advisory Council to provide insight into the birthing process from labor and delivery through postpartum would allow for patient perspective on the entire delivery process.
Level III: Families participate as occasional reviewers and consultants during an improvement project. They can be called on to help identify opportunities and inform practice changes and enhancements. For Care of the Late Preterm Infant teams, the goal is to have a family representative on the team roster who participates in team meetings and contributes insight to your work.
Level IV: Families participate as active members of improvement teams and/or may serve on unit-based task forces and committees and faculty for staff and clinical education. Sustaining this involvement by providing diverse and flexible opportunities to participate can ensure consistent and ongoing involvement. Teams can offer virtual meetings to include parents at later or earlier hours in the day.
Level V: Families are co-leaders of improvement initiatives and have equal responsibilities related to leading quality improvement projects.
Information on these levels of family engagement and more can be found in the reference article here
For teams that are ardently attempting to find a parent to assist them with improving care for late preterm infants, Bombard et al. (2018) provide some suggestions for recruiting:
• It is important to clarify the objectives, roles, and expectations of parents as quality improvement team members. Parents may not need to attend every team meeting, but clearly define their role when they do attend.
• Help parents understand how they can contribute to the team and to the improvement work. It is helpful to guide parents in discussing what information they wish they had known during their stay or after discharge.
• Having parents engage early in developing the quality improvement initiative provides a sense of importance to the team and works to maintain engagement over time. As you set new aims for the Care of the Late Preterm project, provide an opportunity for the parent representative to contribute to what improvement looks like around that aim.
• Having more than one parent representative on your team is a huge benefit. Each parent will have a different perspective on their experience, and this only serves to make their insight and contribution to the work richer.
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