Online peer support communities in the infertility journey: A systematic mixed-studies review

Abstract

Background: Infertile individuals desire support, as they are highly vulnerable to multi-dimensional distress. However, support from family, friends and professionals has been found to be inadequate for their needs. Online peer support communities are avenues where infertile individuals come together virtually to share experiences and provide peer support. Though they are known to fulfil the major need of understanding and sharing experiences, little is known about their actual role in supporting individuals struggling with infertility.

Objective: To systematically consolidate and explore the role of online peer support communities for infertile individuals.

Design: This is a systematic mixed-studies review.

Methods: Eight published and unpublished databases were screened for English studies from inception to October 2022: PubMed, EMBASE, Cochrane, PsycINFO, CINAHL, Scopus and ProQuest. Forty-nine studies were included, and quality was appraised using the Mixed Methods Appraisal Tool. Data-based convergent qualitative (narrative and thematic) synthesis was conducted.

Results: An overarching theme titled: Online peer support, a 'double-edged sword' and four themes were identified: 1) Receiving varied types of support with mutual benefits; 2) convenient and "safe haven" with diverse options for struggling couples; 3) herd mentality and negative collective emotions; and 4) credibility, confidentiality, and misinformation. The online communities were mainly utilised by couples in their late 20s to early 30s and the users were predominantly females. Online communities were mostly on forums and popular social media sites, public and unmoderated. Findings revealed that there were two-way benefits for both providers and receivers of peer support. Online communities were also found to be convenient and "safe haven" with diverse options for struggling couples. Conversely for some couples, online communities led to negative collective emotions and feelings of "unrelatedness" despite being among "similar others". Lastly, some couples raised concerns around the credibility, confidentiality, and misinformation from the online communities.

Conclusions: Whilst online communities are crucial in the individuals' journey through infertility, they can act as a 'double-edged' sword if not managed by professionals. Healthcare professionals can monitor online communities to improve fertility care for individuals; advice individuals to use online communities with caution, rain peer volunteers and develop expert-moderated peer support online communities.

Registration number: PROSPERO [CRD42022291461].

Tweetable abstract: Online peer-to-peer support communities may be a double-edged sword for infertile individuals.

Keywords: Communities; Couples; Infertility; Online support; Peer support.