The birth of an infant who is preterm or has health problems is a stressful time for parents and other family members. There are increasing numbers of sites that provide information written specifically for parents of infants in the neonatal intensive care unit (NICU). In addition there are several sites that also provide online discussion groups or listservs for parents to interact with parents who currently have infants in the NICU and parents whose children are now at home. This column will describe several established, active sites that provide opportunities for parents, and other family members and friends, to interact online.
Share Your Story: An Online Community for NICU Families (http://www.shareyourstory.org/) from the March of Dimes NICU Family Support project (http://www.marchofdimes.com/prematurity/nicu/5435.asp). The Share Your Story site includes discussion forums; places to share stories and celebrations, read blogs, and find information and resources; and options for participating in live chats. Discussions are organized by theme (folders), and members currently online in the various forums are shown. Parents or other family members can use the site to start their own journals or blogs. The site is searchable, and so specific topics that have been discussed can be easily found. March of Dimes staff members and consultants moderate the site.
Premature Baby Premature Child: Preemie Parent Support for Preemie Special Needs (http://www.prematurity.org/) is a "volunteer website from our family for your family. Our goal is to benefit children by providing parents with information they need to care for their preemies. We believe that by providing high quality information in a supportive atmosphere through our discussion list and website, parents and professionals are encouraged to advocate for their children so they may reach their full potential." The site also provides an online support group and information resources on the long-term impacts of prematurity for parents of school-age children who were preterm infants (http://www.prematurity.org/preemie-child/index.html). The list is for parents of children 4 years of age or older.
Preemie-L (http://www.preemie-l.org/) provides resources for parents of infants born 6 weeks or more early. These resources include the Preemie-L Discussion Forum, a Yahoo group that "supports families of premature babies while the babies are in hospital and as they grow up. Discussions are focused on the experience of prematurity for family, the babies themselves, and friends." Another resource on this site is the Preemie-L List, a moderated peer support list. There are other sites that provide similar opportunities, including several others at Yahoo groups.
A listing of some of these resources can be found at http://www.prematurity.org/preemielists.html.
Susan Blackburn, PhD, RN, FAAN
Professor, Department of Family and Child Nursing, University of Washington, Seattle