Article Figures & Data
Figures
- Figure 1.
Timeline, survey topic, and PBRN response to electronic parent monthly surveys.
Tables
Characteristic Total n (%) (n = 105) Gender: female 101 (96.2) Age (years) 18–25 0 26–30 6 (5.7) 31–40 64 (61.0) 41–50 28 (26.7) 51 to older than 55 7 (6.6) Race White 89 (84.8) Black 5 (4.8) Native Hawaiian or other Pacific Islander 1 (1.0) Asian 5 (4.8) More than 1 race Hispanic/Latino 0 (0) Marital status Single 9 (8.6) Married 88 (83.8) Living with romantic partner, not married 4 (3.8) Other (divorced, separated) 4 (3.8) Education (n = 103) High school graduate/GED equivalent 4 (3.9) Technical/secretarial/specialized training 1 (1.0) Partial college 6 (5.8) Associate or 2-year degree 7 (6.8) College/university graduate 26 (25.2) Graduate training/degree (Master's, MD, PhD) 59 (57.3) Yearly income (n = 96) Less than $20,000–$40,000 24 (25.0) $40,001–$60,000 18 (18.8) $60,001–$80,000 16 (16.7) $80,001–$100,000 12 (12.5) More than $100,00 26 (27.1) Number of children 1 28 (36.2) 2 42 (40.0) 3 15 (14.3) 4 or more 10 (9.5) Child insurance Private 91 (86.7) CHIP 3 (2.9) Medical assistance 23 (21.9) GED, General Educational Development; CHIP, Children's Health Insurance Program.
Importance of research “I think research into pediatric issues is very important, and I felt that if I could be a part of helping with that, that I should do so.”
“I think research is important so I am happy to help when I can!”Altruistic reasons “I like to assist in making things better in this world, and having more research assists in that.”
“Our family has been part of a research study for many years and anything I can do to help towards helping to improve the research community and families looking for help I'm glad to be a part of. I would want others to be willing to share so if my family were in need someone may have helped toward finding the answers we need.”
“I felt it was an opportunity to support work that could improve health care delivery, that I could fit within my existing life and schedule.”
“I have always been interested in helping to make care for my children, and all children, better in any way possible.”
“I am all for improving the health and well-being of those around me and for future generations. I have always loved science and I believe in it.”
“I enjoy providing my opinion:)! Plus, I've been lucky enough to receive great pediatric care for my child and I'd like to help make sure others also have that experience.”
“I'd like to help other parents!”
“Improving pediatric healthcare.”
“I believe it is important to participate in surveys to further research (in a non-invasive way) to benefit ALL children, including my own. I hope we can really help families with the research with cures and prevention. Being healthy is important. It is so easy to be in contact with people to do this with today's technology.”Unique perspectives “I have children of various ages and interested in what would be helpful to researchers as an 'old mom.'”
“I have 3 kids and I thought I could lend some good insight.”
“Interest in health disparities and things that make some children's immune systems so much stronger than others.”Having a voice “I value the ability to contribute to children's health research by having my voice heard as a parent. It is also a way of staying current with what is happening in kids' health community and learning new things that are gaining interest in the research community.”
“I enjoy having a voice when it comes to my child and their health. I have always said that you can't complain about something if you are not doing anything to make it better.”
“I recognize the importance of good communication between parents and medical staff and wanted to further my participation in this vital conversation in our community.”
“I like sharing my opinion and potentially helping with improving things, especially now that I have a child.”
“I feel that my feedback could be a valuable component of research.”
“Opportunity to provide input that could improve my children's quality of care.”History of health care or research work “I want to help the pediatric population in any way that I can. As a nurse, I value research in the positive outcomes it brings.”
“I work in the field of healthcare (behavioral health) and a strong connection between primary care and behavioral health services has always been a passion of mine. I thought this would be a good place to share my thoughts on that and other things.”
“I used to work in research for 10 years.”
“I work in a health field. I enjoy sharing experiences because as a parent and health provider I can see two perspectives for situations at times.”
“I work in behavioral health research and wanted to contribute to research as a participant.”
“I am an epidemiologist - medical research is an interest of mine.”Previous healthcare experiences with children “My son's condition and NICU experience.”
“I have a medically fragile child with a rare genetic disease that I also have.”
“My family consumes a lot of health care services, and we see a need for the system to improve.”↵* Survey question: What made you interested in joining our Parent Panel?
NICU, Neonatal Intensive Care Unit.
- Table 3.
Parent Responses on How Participating in a Practice-based Research Network Parent Panel Can Improve Children's Health*
Parent responses demonstrating how participation can help research “Better awareness of what is important to parents at the moment means health professionals can address these concerns and better children's health.” “I think it can give researchers and practitioners a better understanding of what we, as parents, have concerns about when it comes to our child's health. I also feel like it might possibly draw attention to issues that aren't generally thought about.” “I think the more you learn about children's health, the more you can positively influence it.” “I hope the collective opinions of the group can influence procedures and policies. If enough of us parents share a similar experience or feeling, I hope it's taken into consideration for future adjustments.” “I hope the collective opinions of the group can influence procedures and policies. If enough of us parents share a similar experience or feeling, I hope it's taken into consideration for future adjustments.” “Our answers will contribute to research that can determine causes, cures, and prevention.” “By giving researchers the insight I have with my child to compare with other kids.” “Provide input as a mom and healthcare provider into programs to help other parents.” “I look forward to contributing a parent's point of view by sharing my opinions, thoughts, ideas and experiences to improve the services that children receive.” “Help guide the choices and priorities of healthcare groups.” “Hopefully with many people participating it will help in some way to improve some child's health and in turn the family and the entire health community.” “The more information that can be captured and utilized to inform the understanding of health, the better.” Parent responses demonstrating how participation can help parents “They can show what might be the best for everyone, and what I can change.” “Having an easy way to reach out to parents to inform them of research opportunities.” “By me having more knowledge.” “Learning what works for others may also help my children.” “If parents have the tools and information they need from their primary care physician, many gaps can be addressed. Parents trust their Pediatrician.” “If we can learn how to reach parents better we can then help kids better.” Parent responses demonstrating how participation can help both parents and research “I believe that it can help those that play a role in my child's healthcare to understand where parents are coming from. It also makes me aware of up and coming ideas or things going on in the healthcare field.” “Again, having insight as a healthcare provider and a mother, I feel sometimes it helps to be able to see both sides of care.” “I am the mom of a son with autism and epilepsy and also a pediatric nurse. I can view information from [different] points.” ↵* Survey question “How do you think your participation in the Pediatric PittNet Parent Panel can improve children's health?”
