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Table 4 Top Priority Potential Research Questions By Group

From: Research priorities of women at risk for preterm birth: findings and a call to action

Rank Fresno - Black Infant Health Fresno - Every Neighborhood Partnership Fresno – Spanish only group Oakland - Best Babies Zone Oakland - Black Wellness Zone San Francisco - Black Infant Health San Francisco - Homeless Prenatal Program
1 Why aren’t there more widely available education materials or videos, etc. to help women recognize their own stress? Is it harmful to babies to be separated from mom (family) even if they are sick? Why do we have unpleasant experiences at the hospital? How can women learn about pregnancy risk factors before pregnancy? Why don’t we have alternative options for support during delivery? (For example, doula, midwife) Why are nurses disrespectful and/or do not believe patients? How do negative attitudes among nurses develop? Can they be improved? What are the most effective ways to improve patient-provider communication, particularly when patients perceive insensitive and rude comments from health care workers? How can women report insensitive and rude health care worker communication? How seriously are complaints heard? How does a mother’s stress affect the baby? Does stress cause a preterm delivery? What is the impact of stress on preterm birth and birth?
2 Why aren’t we given tools to reduce stress? How can ER + ambulance staff be better prepared for preterm babies-equipment and training? Including progress, outcomes and understanding families. Is there a connection between autism and certain medications? What are the factors that determine how staff interact with patients? What extra care do preemies need? If AA women are at higher risk, why isn’t there specialized care to improve outcomes? Why is pregnancy care different depending on where you get care? What is the most effective care for pregnancy and high risk pregnancy? How different is the care at different locations and why?
3 How can emergency room and ambulance staff be better prepared for preterm babies-equipment and training? What testing should be done to find blood conditions during pregnancy? If I’ve had a preterm birth in the past, will I have a preterm birth in the future? How accurate is genetic testing? When should it be done? Why do some women make more milk and others don’t? What causes SIDS? Is care different based on insurance status or race? Does the type of insurance you have determine the type of care that you get? Or the quality of care?
4 What mental supports should parents seek after PTB/Birth trauma? What can women do when they have concerns that are not listened to? Why are we not seen promptly in an emergency room if we are having an emergency? How is high risk decided? How are women told about it? So what if MD can’t explain your illness or your condition to you, what are they supposed to do? What workplace supports are effective to prevent preterm birth? How does stressful physical work affect pregnancy? What is the evidence for safety of medicines during pregnancy? What is the impact of fentanyl and other medications during pregnancy and breastfeeding?
5 Why aren’t doulas offered (free/covered by insurance)? What can women do when they disagree with the medical advice? Why are doctors not more careful regarding the medications they are prescribing to us during pregnancy? Are there health risks associated with pregnancy? Why is age a risk factor for problems? What’s the best diet for a breastfeeding mom so the breast milk has the most nutrition? What is the role of Child Protective Services (CPS) and reporting of women during pregnancy care? How do health care providers decide to involve CPS during pregnancy care when abuse and neglect are not clearly present? How do they pick and choose family?
6 Why aren’t there standard pregnancy services the same for all types of insurance What mental supports should parents seek after PTB, birth trauma? I still have pain after being administered my epidural over a year ago. Why is this? Why don’t providers tell you after effects of getting your tubes tied? How can staff provide better communication? How can the health care team better follow and read the birth plan? Why isn’t review of birth plans part of the providers’ script? How do birth plans help? Could train-the-trainer experienced women moms be used more effectively for breast feeding support? (HPP) Why does breast milk dry up? Is pumping and feeding as good as breastfeeding? Should babies be put to breast more than pumping? Study breast milk production.
7 Why is BIH the only Culturally-centered pregnancy support service in Fresno? What kind of follow up and home support can be provided to help parents “take care of their babies at home and” make sure they were given right treatments or know signs of problems? Why did I still feel pain despite having been administered an epidural? Is it normal the doctors tell you that you have to have a C-section? What are the holistic ways I can reduce stress during pregnancy-with work and family stress? Is care different based on insurance status or race? Does the type of insurance you have determine the type of care that you get? Or the quality of care? Why do babies receive morphine medications and fluids and what are the risks? Why is it desirable to not allow babies to move? Why does the NICU team not want babies to move around?
8 What causes pregnancy loss? What support do men need during pregnancy and in the NICU? Why do medical providers hurt us so much when performing physical exams on us during pregnancy and when we come in for our ultrasounds? Why do doctors talk down to patients? Why do a very few women get pregnant while on birth control? Could train-the-trainer experienced women be used more effectively for breast feeding support? (experienced moms) What are the most effective ways to improve patient-provider communication, particularly when patients perceive insensitive and rude comments from health care workers? How can women report insensitive and rude health care worker communication? How seriously are complaints heard?
9 Why are (n’t) more options for birth? (water birth)? Is there risk to extended family bonding in the NICU? Is there something that we can do as mothers to help our babies when they are in the NICU? How real is confidentiality? (between physicians and others) Why would I have a spontaneous pneumothorax? No known risk factors. What are the best “home remedies” for babies and preemies? What are the best at-home formula preps? Does a mother’s age contribute to preterm age?
10 What can friends and families do to support families in the NICU? Why does it take so long doctors to decide to do further diagnostic testing after multiple miscarriages? What level of bleeding is normal during pregnancy? Can the father’s affect, effect the women’s state of pregnancy? When babies smile at young newborn age is it gas or something else? Such as “antho” kicking in spirits, ancestors thoughts? Is marijuana safe during pregnancy? Is it safe/is it beneficial for the baby? What supports are most helpful for moms with children at home (with no support)? What could make hospital visits and in-hospital stays easier for families?
11 Why do I have more than one doctor? What causes placental abruption? Which medicines have both a negative and positive impact on pregnancy? Do men affect a woman’s risk during pregnancy blood type, DNA? Do you have the option to change doctors and nurses?   How do decisions about discharge get made between families, insurance companies, providers, parents? What are the best practices (difference hospital stay)?
12     Why don’t physicians explain what they are doing and when you will see them? What more can be done to allow moms to have skin-to-skin /BF after anesthesia?   How do needed dental procedures during pregnancy affect the baby?
13     Why do we get conflicting advice about diet? What controls weigh gain during pregnancy?   What are the best ways to establish trust between pregnant women and care givers? What are effective strategies to build trust with patients?
14     Why do you have to give birth on your back?    What are the best strategies for emotional support and preparation for parents at risk for preterm parenthood?
15        Why are nurses disrespectful and/or do not believe patients? How do negative attitudes among nurses develop? Can they be improved?