“Whenever you need support, you first turn to the group”: motivations and functions of WhatsApp groups for youth living with HIV

ABSTRACT

Social support is a critical component of achieving positive health outcomes for youth living with HIV (YLWH). Mobile health (mHealth) has significant potential for providing social support to YLWH. However, little is known about the domains of social support most needed by YLWH which mHealth interventions might address. Drawing on the spontaneous creation of WhatsApp support groups by YLWH in Nairobi, Kenya, we characterized Kenyan YLWH’s social support needs and potential roles of social media groups in meeting them. We conducted interviews and focus-groups with 68 YLWH, 24 caregivers and 20 healthcare workers, and observed two YLWH-led WhatsApp groups for 6 weeks. Youth reported that existing support systems, including family and healthcare workers, already provided informational and instrumental support. However, they emphasized unmet companionship and emotional support needs, leading to isolation, hopelessness, and medication adherence challenges. Participants identified connection with other YLWH as a unique source of emotional and companionship support that allowed them to feel more secure and less isolated. Interviews and observed WhatsApp chats demonstrated that WhatsApp groups were a desirable medium for companionship support that overcame barriers to in-person connection.

KEYWORDS:

• Youth living with HIV
• mHealth
• social support
• WhatsApp
• social media

Acknowledgements

We gratefully acknowledge Vijana-SMART study participants and facility staff for facilitating participant recruitment. We also acknowledge support from the University of Washington’s Global Center for Integrated Health of Women, Adolescents and Children (Global WACh).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethics approval

Ethical approval was obtained from the institutional review boards at University of Washington (study 00002554) and University of Nairobi / Kenyatta National Hospital (study P296/06/2017).

Consent to participate

Informed consent was collected from all individuals who participated in this study, except non-administrator members of the WhatsApp groups observed by the study, for whom consent was waived.

Availability of data and material

Data are available from the corresponding author upon request.

Code availability

Code is available from the corresponding author upon request.

Additional information

Funding

This work was supported by the National Institutes of Health (grant numbers P30AI027757, K18MH122978, K24HD054314), as well as the University of Washington Global Center for Integrated Health of Women Adolescents and Children (Global WACh).