Use of social networking sites by parents of very low birth weight infants: Experiences and the potential of a dedicated site
Abstract
Unlabelled 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…
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The majority of parents reported that neither currently available general social networking sites nor dedicated websites adequately met their need for information exchange.
“However, the majority of parents reported that neither currently available general social networking sites (e.g., Facebook, etc.) nor dedicated websites (e.g., parenting sites, mother-child sites, pregnancy sites, etc.) adequately met their need for information exchange (Gabbert et al., 2013).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
Website/mobile apps and online local social networking moderated by healthcare professionals may offer significant benefits to families with preterm infants.
“Additionally, website/mobile apps and online local social networking moderated by healthcare professionals may offer significant benefits to families with preterm infants (Gabbert et al., 2013; Garfield et al., 2016; Nayak et al., 2019).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
Parents suggested improvements to social networking sites including community non-commercial online networks, opportunity for interpersonal communication with other parents in regional, hospital-based, native-language, a medical expert moderator, general information on prematurity, explanations of commonly used abbreviations in the hospital settings, explanations of common medical problems and the
“Parents’ suggestions to improve social networking sites included: community non-commercial online networks, opportunity for interpersonal communication with other parents in regional, hospital-based, native-language, a medical expert moderator, general information on prematurity, explanations of commonly used abbreviations in the hospital settings, explanations of common medical problems and the”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
Parents did not seem to receive satisfactory support from online social networking sites.
“In addition, parents did not seem to receive satisfactory support from online social networking sites (Gabbert et al., 2013).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
Parents of very low birth weight infants who used internet and online social networking sites described common topics of discussion including individual development of the child in comparison with others, specific prematurity-associated diseases and therapies, and/or follow-up care.
“Parents described common topics of discussion including individual development of the child in comparison with others, specific prematurity-associated diseases and therapies, and/or follow-up care (Gabbert, Metze, Bührer, & Garten, 2013).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert, Metze, Bührer, & Garten, 2013
Parents whose infants died were excluded from the study due to ethical considerations, so no information regarding their use of social networking, experiences and bereavement support could be gathered.
“Parents whose infants died were excluded from the study due to ethical considerations, thus no information regarding their use of social networking, experiences and bereavement support could be gathered (Gabbert et al., 2013).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
In Gabbert et al. (2013), data of only those parents who were willing to take the time to complete the questionnaires was obtained.
“For example, data of only those parents who were willing to take the time to complete the questionnaires was obtained (Gabbert et al., 2013).”
From Scoping review of interventions to support families with preterm infants post-NICU discharge (2022) · cites this paper as Gabbert et al., 2013
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“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).”
BackgroundScoping review of interventions to support families with preterm infants post-NICU discharge
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- Authors
- Gabbert, T. I., Metze, B., Bührer, C., & Garten, L.
- Affiliations
- Charité – Universitätsmedizin Berlin (DE)
- Corresponding author
- Garten, Lars
- Venue
- European Journal of Pediatrics
- Published
- 2013-08-03
- Volume
- 172
- Issue
- 12
- Pages
- 1671-1677
- ISSN
- 0340-6199 (ISSN-L)
- 1432-1076
- OpenAlex
- W2094598428
- Cited by
- 37
- References
- 6
- Citations by year
- 2026: 1 · 2025: 1 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 4 · 2020: 3 · 2019: 4 · 2018: 4 · 2017: 3 · 2016: 6 · 2015: 4 · 2014: 1
- FWCI
- 3.41
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- European Journal of Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Infant Development and Preterm Care
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Keywords
- social networking sites, preterm infants, very low birth weight infants, parental experiences, neonatal intensive care, parent-provider communication, health information needs, neonatal nurses
- MeSH terms
- Adult, Female, Humans, Infant, Infant, Newborn, Infant, Premature, Intensive Care Units, Neonatal, Male, Parents, Surveys and Questionnaires, Self-Help Groups, Social Support, Infant, Very Low Birth Weight, Internet, Information Seeking Behavior, Social Media
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