Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support

Abstract

Purpose: People with cancer routinely seek information and support in peer groups online. While peer communities constitute a major component of the health care landscape, they exist in isolation from clinical and research institutions. This study aimed to explore how and why cancer patients utilize online peer support groups and how they might be improved.

Methods: A convenience sample of members of 6 closed Facebook cancer peer support groups (n=291) participated in an online needs assessment survey. We further conducted semi-structured interviews with 14 members and 6 moderator-patients, hand-coding the free-text responses and interview transcripts.

Results: Group participation was largely motivated by the desire to exchange information (79%) and to connect with others sharing the same condition (76%). Among study participants, 40% indicated they did not get information or support from any other online or offline organizations, 60% indicated they had few concerns with Facebook peer support groups, 84% indicated it was at least somewhat important that their health information and posts remain private, and 75% desired more input from experts in order to access evidence-based information and curb misinformation. About half wanted more group moderation, and moderators themselves expressed an urgent need for training and support.

Conclusions: While online peer groups are a commonly utilized care component for many people with cancer or hereditary cancer risk and serve as a primary source of condition information, many participants desired more expert involvement in and moderation of groups. Privacy and security of health information was another key need expressed.

Keywords: Facebook group; breast cancer; health information sharing; misinformation; moderation; online health communities; ovarian cancer; peer support; privacy risks; social media.