During EPIQ (Evidence-based Practice for Improving Quality) CPBF launched 10 family priorities based on our survey of NICU families. Our priorities are listed below.
Our work with EPIQ is so important to ensuring families voices are heard for NICU care and life post-discharge.
Priority 1: Support parents from all walks of life to thrive as PARENTS both inside and outside the NICU
CPBF wants to ensure that NICUs provide a welcoming environment and culture that see access to support as a necessary part of family care. We want to help families be the best parents/caregivers they can be in the NICU and after discharge.
Priority 2: Foster multiple forms of long term and sustainable peer relationships
We would like to build a culture that is encouraging of parents connecting with other parents in the NICU who are dealing with the same challenges at the same time (cultural, emotional, medical, etc.) and with graduate NICU parents who know life after the NICU. We would like to see systems built to allow parents to connect where, how and with whom they want to when they want to.
Priority 3: Facilitate knowledge building through relationships aimed at fostering confident independence
We would like to aim for a relationship that balances power over the duration of the relationship. Who leads and who follows will shift along the way. We would like systems built that allow for parents to both lead, follow, show and recognize growth.
Priority 4: Feeling like parents BELONG, instead of 'being invited in' or just 'visiting'
We want to see systems, policies, rules and environment developed that are based on parental ‘belonging’.
Priority 5: Take the time to develop, understand and support shared priorities and what drives them
We want to see investment in understanding the family’s history, knowledge and values and to apply them to how care is provided and supported. Seeing families as individuals with unique past experiences that have formed their current values, practices and ways of engaging with healthcare allow for true family centered and driven care.
Priority 6: High quality communication between HCP and caregivers, and between HCP and HCP that address the individual family's needs, child's needs, knowledge and goals
Clear and shared expectations should be established that acknowledge the parent as true partners in care, with shared (not oppositional) goals. Setting team goals, that are met with collaborative practices, support parents desire to be a useful and valuable member of the care team.
Priority 7: Consistency in care, with respect to providers (nurses, doctors, etc.)
Parents value a central point of contact (‘quarterback’) who knows their child, family and the journey to-date, so that meaningful trusting relationships can develop and benefit outcomes.
Priority 8: Start supporting discharge, transfers, and care post-NICU early in the admission by developing trusted relationships that continue even after the patient has left the unit
Consider that from the start of the admission, the goal is life after the NICU, in whatever form it takes. It isn’t just being ‘prepared’ for discharge, gut to thrive in their next phase of life.
Priority 9: Listen, value and validate parental knowledge
We want to see a fostered sense of trust in parental capacity and the ability to contribute, learn and grow so that a shared sense of purpose is developed.
Priority 10: Seeing our relationship as the Parent’s child + all our expertise + shared care
We entrust our child into the hospital’s care, but retain our desire to always be the parent, learn without judgement and care for our child in the safest way possible.