Social media and peer-to-peer support for individuals with health care needs and their caregivers: a scoping review (Preprint)

Abstract

BACKGROUND Individuals with health care needs and their caregivers require substantial informational and emotional support. Providing this support is a major challenge for care providers, who are often not able to adequately address barriers and may not be aware of available services and programs. Online P2P support offers an accessible and inexpensive source of support; however, the breadth of these supports on social media has not been previously documented. OBJECTIVE This study was a scoping review of research examining the use of peer-to-peer support on social media by individuals with health care needs and their caregivers. METHODS This review used the PRISMA-SR method to search for articles from 1997 to 2019. RESULTS A total of 94 articles were included. Patients and caregivers use many social media websites for P2P interaction, including: Facebook (n = 19), Twitter (n = 7), and YouTube (n = 6). Providing and receiving informational and emotional support were important uses of social media for P2P support; however, the specific needs and experiences of patients and caregivers appeared to change as knowledge regarding the condition(s) improved. Despite the many benefits associated with participating in online P2P groups, concerns related to ethics, privacy, and the potential to spread misinformation are outlined as risks associated with its use. CONCLUSIONS This study revealed that patients and caregivers engage in P2P support on social media to receive informational and emotional support from peers, despite known risks and limitations. Social networking websites were revealed to be particularly suited for P2P support communication.