Our goal is to improve the health outcomes and quality of life for preterm infants and their families, through interventions to reduce chronic stress and promote resilience and equity.

 

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Family in a NICU

How we work

Breaking down siloes and bringing lived experiences to the table to improve the lives of the tiniest babies and their families

Parent Clinician Advisory Board

The Parent Clinician Advisory Boards (PCAB) are the world’s first, extending our innovative Community Advisory Board model to the NICU setting and engaging parents and front-line health care professionals in a discussion about what research matters most for improving outcomes and equity for preterm infants. Using our novel method of Research Priority Setting, each board has developed their “Top 10” research priorities and are poised to commission, review and collaborate on new research over the coming years. 

 

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Research studies that improve lives
 


Mobile-Enhanced Family Integrated Care (mFICare)


How do NICU parents and their infants' health improve if parents are centered as primary caregivers alongside their baby's care team?

Learn more 

Parents being involved in their child's NICU care team


COVID-19 Hospital Restriction Survey


How have hospital restrictions due to COVID-19 impacted patient and family-centered care? 

Learn more 

A provider with a mask standing in front of a hospital


Understanding Impact of Skin-to-Skin Contact


What happens biologically to a preemie when they receive daily skin-to-skin contact with their parent?  

Learn more 

A preemie lies on it's father's bare chest
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Other Postnatal Intervention Research Projects

Ongoing Projects

Improving Preterm Infant Outcomes with mobile enhanced Family Integrated Care (mFICare)

Linda Franck, PhD, RN | Department of Family Health Care Nursing | UCSF School of Nursing


This project tests the effectiveness of a new model of Family Integrated Care (FICare) care that transforms the culture of the NICU so that parents are more fully integrated as partners in their baby’s care. FICare was recently tested in NICUs across Canada, Australia, and New Zealand in a large cluster randomized controlled trial, which showed that preterm infants enrolled in the FICare intervention had better rates of weight gain and breastfeeding at discharge, while parents displayed lower levels of stress and anxiety, compared to usual family-centered care NICUs. We have enhanced FICare with the addition of a mobile app for the US context where many parents may be unable to be physically present in the NICU during the workday. The NFRC-supported mFICare comparison study has launched and will be conducted at six NICU sites by the end of 2017.

Clinical accuracy of a new method to wirelessly monitor skin temperature in preterm neonates using adhesive-embedded sensors

Linda Franck, PhD, RN | Department of Family Health Care Nursing | UCSF School of Nursing
Todd Coleman, PhD | Institute of Engineering and Medicine | UC San Diego


Hypothermia, hyperthermia and thermal instability are major causes of neonatal mortality and morbidity in preterm infants. Although an essential part of life-saving NICU care, temperature monitoring is a major source of daily stress for vulnerable preterm infants. This pilot study will generate preliminary data on the accuracy and feasibility of the new adhesive-integrated flexible electronic systems (AIFES) temperature sensor—which can be embedded in routinely used medical adhesives, applied to the skin and monitored wirelessly—compared with the ‘gold standard’ digital thermometer in preterm infants 28 to 37 weeks gestational age.

We3Health: A mobile health app for parents of NICU parents and clinicians

Linda Franck, PhD, RN | Department of Family Health Care Nursing | UCSF School of Nursing
Yao Sun, MD, PhD | Department of Pediatrics, Division of Neonatology | UCSF School of Medicine
Scott Bolick and Brittany Lothe | Will’s Way Foundation


Using human-centered design methods, we have co-created with parents of preterm babies a mobile application that facilitates information exchange between healthcare providers and parents, and enables parents to document their experiences and participate in shared decision-making. The We3Health Tracker version facilitates documentation of key parent engagement processes and outcome metrics regardless of the model of NICU care. The We3Health App mFICare version is uniquely designed to support parents in FICare NICUs with its features that educate, encourage, and engage parents as partners in their baby’s care. We3Health gives parents support in the palm of their hand, on demand and wherever they may be. User testing at Benioff Children’s Hospital San Francisco was very positive and the We3health App will be in use to support mFICare research at five other NICU sites in 2017.

Completed Projects 

Milk, growth and microbiota: An RCT of donor milk vs. formula to supplement breastfeeding late preterm newborns

Valerie Flaherman, MD, MPH | Pediatrics | UCSF School of Medicine


Late preterm infants, who are born at 34, 35 or 36 weeks gestation, often have difficulty feeding, establishing growth, and fighting off infection. Breastfeeding provides improved nutrition to help fight infection, in part because breast milk encourages the growth of healthy bacteria (microbiota) in the infant’s intestine. However, when mothers give birth preterm, their breasts are usually not quite ready to make milk; it can take several days to have enough breast milk to match a baby’s nutritional needs. If there is not yet enough breast milk, formula is often used. However, formula can interfere with the growth of healthy intestinal bacteria. An alternate nutritional option is donor milk from a certified milk bank.

We randomly assigned 20 late preterm, breastfeeding newborns to either donor milk or formula and collected subsequent weights as well as bowel movements for analysis of microbiota. Infants lost weight for the first 2 days after enrollment and were gaining weight by the end of the first week. There were no differences in the rate of weight gain between newborns who received formula and those who received donor milk. Analysis of microbiota is not yet complete. This small study provides estimates of weight gain for late preterm newborns requiring supplementation. These estimates may inform the design of a future, larger study to determine whether donor breast milk is better than formula for late preterm newborns.

Eliciting the family experience to plan an outcome evaluation: a pilot study of the Special Start neonatal follow up program

Laura Frame, PhD | UCSF Benioff Children’s Hospital Oakland


Infants born prematurely face many challenges during hospitalization, through the transition process from hospital to home. Caring for a premature baby at home can be further complicated for parents grappling with poverty, violence, migration and other stressors. For 20 years, UCSF Benioff Children’s Hospital Oakland has operated a specialized home-based program, Special Start, for families of premature babies at high social risk.

The aims of this study were to (a) describe the Special Start intervention model in detail, and (b) describe families’ experiences of premature birth and coping with stressors; bringing these together in a program manual and proposal for outcome evaluation.

This qualitative study used a theory of change approach that visually outlines the “how” and “why” a service model is believed to be effective in reaching its goals. Two rounds of focus groups and interviews were conducted with 10 former Special Start participants and 17 staff members, each. These were audiotaped and transcribed, and narratives were analyzed for key themes.

The perspectives of families and staff converged around a core set of intervention principles. At the foundation of Special Start’s model are 6 basic tenets: it is relationship-based; trauma-informed; flexible and family-driven; race, place and class matter; it is multidisciplinary; and interventions reach “beyond baby”. From there, interventions address a range of basic, psychosocial, and health/developmental needs, supporting parents to become confident experts on their own child; establish a strong, positive parent-child relationship; and to have the tools to handle future challenges. The ultimate goal is that children are healthy and developing well in strong, healthy families.

The study resulted in a detailed program manual for Special Start, in which interventions are described and illustrated in the words of former Special Start participants. A proposal for further evaluation of Special Start is provided.

Learn more about Laura Frame's work with Special Start Programs from our September 2018 Collaboratory

Evaluating the effect of San Francisco’s Paid Parental Leave Ordinance on preterm birth and associated maternal and newborn outcomes

Deborah Karasek, MPH, PhD | Obstetrics, Gynecology and Reproductive Sciences | UCSF School of Medicine
Julia Goodman, MPH, PhD | Division of Public Administration | Portland State University

Most women in the US work during pregnancy, yet only 13% of workers in the US have access to paid parental leave, forcing parents to return to work sooner than they would like, or face the financial burden of forgoing pay while on leave. Understanding that these conditions create stress and physical strain that may contribute to high rates of preterm birth among economically vulnerable populations, our study seeks to examine whether changes in parental leave policies improve outcomes. We used an experimental design to evaluate the impact of San Francisco’s recently enacted Paid Parental Leave Ordinance (PPLO), which provides new parents with 6 weeks of full wage replacement. This is the first study to examine the effect of the PPLO on preterm birth as well as potential mediating mechanisms. This study provides an important opportunity to understand policy levers to reduce preterm birth among women at highest risk.​

We used a multiple-methods approach, including a subset of the 2016-2017 Bay Area Parental Leave Survey of Mothers (analytic sample = 1,007) and interview data from mothers who stayed at a neonatal intensive care unit in 2019 (n = 7). All participants resided at that time in California, a state that offers PPL. The independent variable for the survey analysis was a composite measure of perinatal complications, quantified as binary with a value of 1 if respondents reported experiencing any of the four complications: poor maternal mental health during or after pregnancy, premature birth, or poor infant health. Dependent variables for the survey analysis measured lack of support or information for accessing PPL. We used linear probability models to assess the relationship between perinatal complications and PPL support. Thematic analysis was conducted with the interview data to understand how perinatal complications shape the process of accessing PPL.

Survey results revealed that parents with perinatal complications had a lower understanding of PPL benefits and low overall support for accessing leave, including from employers, compared with parents without perinatal complications. From interviews, we learned that perinatal complications present unique challenges to parents navigating PPL. There were multiple entities involved in managing leave and providing information such as the benefits coordinator and employers. Supervisors were reported as providers of critical emotional and financial support.

Read the full publication "Barriers to Accessing Paid Parental Leave Among Birthing Parents With Perinatal Health Complications: A Multiple-Methods Study" at Women's Health Issues.   

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News from our Postnatal Research