Family and Provider Experiences With Longitudinal Care Coordination for Infants With Medical Complexity.
Abbey Dallas, Alexandra Ryan, Karen Mestan and 2 others
PMID 35797366WHAT IT FOUND
Parents and NICU providers described a longitudinal care coordinator program for infants with medical complexity as helpful for discharge planning, appointments, financial and emotional support.
It was well liked, but there was no comparison group, so it does not show better medical outcomes.
Key findings
01Care coordinators were described as helping families maintain continuity through rotating NICU teams, discharge planning, outpatient appointments, financial needs and emotional support.
02Among 23 survey respondents, most reported positive experience, with mean satisfaction 1.2 on a 1 to 4 scale where lower scores indicate higher satisfaction, and 96% felt comfortable advocating for their child in the NICU.
03The evaluation did not include a comparison group and did not assess medical outcomes or cost effectiveness, so it reports acceptability rather than effectiveness.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
This was a descriptive program evaluation without a comparison group, so it cannot show that the program caused better care or outcomes. It did not measure key medical outcomes, readmission, length of stay, or cost effectiveness. Only five parents were interviewed, all were English-speaking mothers, and survey response was 23 of 48 invited families, so the views may not represent all families. The study had a low response rate from Spanish-speaking families despite reminders. The small sample size limited subgroup analyses, including by race. It was a single program at one Level IV NICU, so transportability depends on local resources and staffing. Program funding came from an affiliated non-profit organization, which may shape how the program operates and is evaluated.
Declared interests
The care coordination program was funded by an affiliated non-profit organization, Little Heroes League, with hospital operations covering management time and expenses. The authors reported no competing interests.
The easy way to misread this
Do not read the positive satisfaction ratings and provider comments as evidence that this care coordination program improves infant medical outcomes, reduces readmissions, or saves money. It had no comparison group and did not evaluate medical outcomes or cost effectiveness.