Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.
BakerB.YangI. (2018).
Social media as social support in pregnancy and the postpartum. Sexual & Reproductive Healthcare,
17, 31–34.
2.
BoumaG.AdmiraalJ. M.de VriesE. G.SchroderC. P.WalenkampA. M.ReynersA. K. (2015).
Internet-based support programs to alleviate psychosocial and physical symptoms in cancer patients: A literature analysis. Critical Reviews in Oncology/Hematology,
95(1), 26–37.
3.
CapituloK. L. (2005).
Evidence for healing interventions with perinatal bereavement. MCN: The American Journal of Maternal/Child Nursing,
30(6), 389–396.
4.
CarlsonR.LammertC.O’LearyJ. M. (2012).
The evolution of group and online support for families who have experienced perinatal or neonatal loss. Illness, Crisis & Loss,
20(3), 275–293.
5.
CreswellJ. W. (2015). A concise introduction to mixed methods research.
Thousand Oaks, CA:
Sage.
6.
DavidsonD.LetherbyG. (2014).
Griefwork online: Perinatal loss, lifecourse disruption and online support. Human Fertility,
17(3), 214–217.
7.
De la Torre-DiezI.Diaz-PernasF. J.Anton-RodriguezM. (2012).
A content analysis of chronic diseases social groups on Facebook and Twitter. Telemedicine and e-Health,
18(6), 404–408.
8.
EysenbachG.PowellJ.EnglesakisM.RizoC.SternA. (2004).
Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. British Medical Journal,
328(7449), 1166.
9.
FullwoodC.ChadwickD.KeepM.Attrill-SmithA.AsburyT.KirwanG. (2019).
Lurking towards empowerment: Explaining propensity to engage with online health support groups and its association with positive outcomes. Computers in Human Behavior,
90, 131–140.
10.
GoldK. J.BoggsM. E.MugishaE.PalladinoC. L. (2012).
Internet message boards for pregnancy loss: Who’s on-line and why?Women’s Health Issues,
22(1), e67–e72.
11.
GoldK. J.BoggsM. E.MuzikM.SenA. (2014).
Anxiety disorders and obsessive compulsive disorder 9 months after perinatal loss. General Hospital Psychiatry,
36(6), 650–654.
12.
GoldK. J.LeonI.BoggsM. E.SenA. (2016).
Depression and posttraumatic stress symptoms after perinatal loss in a population-based sample. Journal of Women’s Health,
25(3), 263–269.
13.
GoldK. J.NormandinM. M.BoggsM. E. (2016).
Are participants in face-to-face and Internet support groups the same? Comparison of demographics and depression levels among women bereaved by stillbirth. Archives of Women’s Mental Health,
19, 1073–1078.
14.
GoodwinB. C.FordD. E.HsiungR. C.HoustonT. K.FogelJ.van VoorheesB. W. (2018).
First, do no harm: Referring primary care patients with depression to an Internet support group. Telemedicine and e-Health,
24(1), 37–44.
15.
GriffithsK. M.CalearA. L.BanfieldM. (2009).
Systematic review on Internet Support Groups (ISGs) and depression (1): Do ISGs reduce depressive symptoms?Journal of Medical Internet Research,
11(3), e40.
MilesM. B.HubermanA. M. (1994). Qualitative data analysis.
Thousand Oaks, CA:
Sage.
18.
Niela-VilenH.AxelinA.SalanteraS.MelenderH. L. (2014).
Internet-based peer support for parents: A systematic integrative review.International Journal of Nursing Studies,
51(11), 1524–1537.
PaulusT. M.VargaM. A. (2015). “
Please know that you are not alone with your pain”: Responses to newcomer posts in an online grief support forum. Death Studies,
39(10), 633–640.
21.
PectorE. A. (2012).
Sharing losses online: Do Internet support groups benefit the bereaved?International Journal of Childbirth Education,
27(2), 19–26.
22.
Van VoorheesB. W.HsiungR. C.Marko-HolguinM.HoustonT. K.FogelJ.LeeR.FordD. E. (2013).
Internal versus external motivation in referral of primary care patients with depression to an Internet support group: Randomized controlled trial. Journal of Medical Internet Research,
15(3), e42.
23.
YoungblutJ. M.BrootenD.CantwellG. P.Del MoralT.TotapallyB. (2013).
Parent health and functioning 13 months after infant or child NICU/PICU death. Pediatrics,
132(5), e1295.
