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

Abstract

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.

Supporting parents of premature infants transitioning from the NICU to home: A pilot randomized control trial of a smartphone application

“…Debate surrounds mhealth initiatives in part due to regulatory concerns (Cortez et al, 2014) and a lack of scientific evidence for improved care, outcomes, or cost savings, especially around newborn health (Agarwal and Labrique, 2014). NICU parents are already using the internet as a resource (De Rouck and Leys, 2011), however, with most agreeing there is useful information available on premature infants (Gabbert et al, 2013). Providing a scientific foundation and evidence of the usefulness of these technologies is therefore incumbent on researchers and health professionals.…”

Online information for parents caring for their premature baby at home: A focus group study and systematic web search

“…One way to achieve this is through the provision of mobile device‐friendly social technology and web‐based content, which are increasingly being used in health care for patient information and support . Gabbert et al surveyed 141 parents of very low birthweight infants in Germany and found all respondents said they used the Internet with 80% using it at least once every day. When searching for information during the stay in the neonatal intensive care unit (NICU) and after discharge, most parents used Google search engines.…”

“…The most frequently searched topics were “specific medical problems associated with prematurity,” “general information on prematurity” and “outcome of preterm infants”. While parents considered the Internet a useful source of information on prematurity after discharge home, only 20% felt that their questions had been fully answered online …”

Learning to parent from Google? Evaluation of available online health evidence for parents of preterm infants requiring neonatal intensive care

“…6 This is not isolated to Canada, as German parents (n = 141) of very low birth weight infants reported to have searched for information online regarding pregnancy or prematurity similarly during pregnancy (75.2%), hospitalization (68.6%), and post-discharge (73.0%). 10 Parents identified searching for information on prematurity, explanations of abbreviations, common medical problems, and available treatments, as well as information on infant care post-discharge. 6,10 While the Internet could be a beneficial resource for parents to access a breadth of information related to prematurity at their own pace, there are significant differences in health and care needs found within this highly sensitive population characterized by gestational age, birth weight, diagnoses, feeding methods, and severity of illness.…”

“…10 Parents identified searching for information on prematurity, explanations of abbreviations, common medical problems, and available treatments, as well as information on infant care post-discharge. 6,10 While the Internet could be a beneficial resource for parents to access a breadth of information related to prematurity at their own pace, there are significant differences in health and care needs found within this highly sensitive population characterized by gestational age, birth weight, diagnoses, feeding methods, and severity of illness. 11 The care required to support an infant born extremely preterm (i.e.…”