Use of social networking sites by parents of very low birth weight infants: experiences and the potential of a dedicated site

The objective of this study was to study the experiences of parents of preterm infants who use social networking sites and the potential of such sites for gathering information and facilitating personal exchange. An anonymous self-reporting questionnaire was administered to parents of infants below 1,500 g birth weight born between January 1, 2009 and December 31, 2010 in two tertiary neonatal intensive care units. Of the 278 families who were sent a questionnaire, 141 responded; 53.6 % of respondents claimed to be presently members of online social networking sites. However, only 10.7 and 18.6 % used the Internet to exchange information about their infants during the NICU stay and after discharge, respectively. Most (64.0 %) responding parents considered that currently available commercial Internet sites inadequately met their need to exchange information as parents of preterm infants. Overall, 79.1 % of respondents reported that they would be interested in joining a native-language online networking site providing (1) general information on prematurity, (2) explanations of abbreviations commonly used in a hospital setting, and (3) details of common medical problems and the treatment thereof, including the availability of local therapists and follow-up services. Also, parents wanted to engage in personal exchange online not only with other parents but also with medical staff. Conclusion: The support of parents of hospitalized preterm infants by neonatal nurses and doctors could be extended by developing an expert-controlled, online networking site providing reliable and updated information and facilitating personal exchange among parents.