https://orcid.org/0000-0002-0829-3122
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ABSTRACT
Third-sector organizations, an important support for people living with HIV, increasingly use digital technology to improve service efficiency and reach. However, there is limited empirical evidence on this use by women living with HIV. The 4M Network (4MNet) is a peer-run UK-wide network of trained Mentor Mothers (MMs) living with HIV; it uses the WhatsApp platform as its primary digital communication tool. We report on a qualitative study about 4MNet MMs’ experiences of using WhatsApp, to inform the design of future digital support services. Seven telephone interviews were conducted with five MMs and two project management team (PMT) members in February 2019. Interviews were analyzed using Interpretive Phenomenological Analysis (IPA). WhatsApp was found to have several key features that provided both positive and negative use considerations. WhatsApp eased communication among MMs and supported participation in group activities despite differing schedules and geographic locations. Challenges encountered with WhatsApp included: financial restrictions to data storage and continual access; self-confidence using technology; and security and privacy concerns. Peer-led digital communication is found to be acceptable and effective for women living with HIV. Understanding barriers and valued features of existing digital platforms increasingly used among potentially marginalized groups is vital for informing inclusive innovation.
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Acknowledgements
We wish to acknowledge the 4MNet members and the Mentor Mothers who participated in the research for their passion and commitment. We also acknowledge the ongoing support of 4M’s Steering Group members: Jane Anderson; Susan Bewley; Laura Byrne; Rageshri Dhairyawan; Gill Gordon; Fiona Hale; Vicky Johnson; Longret Kwardem; Rebecca Mbewe; Angelina Namiba; Shema Tariq; Pat Tookey; Alice Welbourn; and Alison Wright.
Disclosure statement
ST and RD have previously received travel bursaries funded by Janssen-Cilag through the British HIV Association, and speaker honoraria and funding for preparation of educational materials from Gilead Sciences. RD has also previously received speaker honoraria and funding for preparation of educational materials from VIiV Healthcare. ST and RD are members of the steering group of SWIFT, a networking group for people involved in research in HIV and women, funded by Bristol-Myers Squibb.