Communication Patterns That Influence Patient Engagement with Online Cancer Peer Support Groups
Huyen Vu, MSPH
In a recent blog post, our colleague emphasized the importance of patient engagement as “a precursor to successful prevention and chronic disease self-management programs.” Engagement is especially crucial to Internet-based peer support interventions, which suffer from sporadic participation and high dropout rates. Engagement levels drop significantly with time, with less than 20% of patients following an online intervention through to completion.1 The promise of online forums to deliver low-cost peer support to varied and sometimes geographically remote populations can only be realized with continuous quality improvement. To enhance the impact of online support, it is important to understand how communication patterns in this medium influence patient engagement.
Characteristics of People that Use Online Forums
People who participate in online support-groups are generally classified as posters, lurkers (common terminology, no negative connotations intended) and non-users, corresponding to varying levels of engagement in a particular online intervention.2 Posters actively participate in online peer support groups, while non-users rarely seek support from the virtual community. Lurkers are participants who read and follow posts, but seldom or never publicly contribute to the online forums.
Han et al. suggest that different engagement patterns in online breast cancer support groups are associated with patients’ socio-demographic characteristics and psychological factors.3 For example, Causasians are far more likely to be active in online support groups than African Americans, spending more time and producing greater volumes of writing. Posters were more likely to live alone than lurkers. Noticeably, high levels of depression and low competence in health information were correlated with high levels of engagement in online support groups. Patients who perceived their cancer condition as serious and did not otherwise receive much offline social support from family and friends tended to post and exchange messages more actively to solicit informational and emotional support.
Finding Patterns in Online Forum Posts
Researchers from Carnegie Mellon University analyzed the contents of over 31,000 messages in an online breast cancer support group to study factors that prompt participation and determine the most-discussed issues on the forum.4 As expected, patients sought more (or less) help and comfort from the online medical support community when they faced more (or fewer) stressful events in their illness. Specifically, patients had a stronger motivation to join the discussion and seek informational and emotional support when they experienced a major disease event such as diagnosis, chemotherapy, or recurrence of the cancer. Many patients joined the support community shortly after their cancer events occurred. Chemotherapy and diagnosis were the most significant events that prompted participation in the online support groups.
Not surprisingly, patients participate in discussion topics that are most relevant to their current cancer development stage. Accordingly, chemotherapy, diagnosis, reconstruction and mastectomy were the most often discussed topics in the forum. The topic of chemotherapy was dominated by messages related to hair loss/appearance and spirituality, indicating that patients seek emotional support to help cope with the side effects of treatment.
Characteristics of Effective Online Messages
Responsiveness to messages in an online peer support group is a key indicator of group cohesion, and it can motivate lurkers and non-users to become more active members of the online community. Lewallen et al. defined responsiveness as “having received [at least] one reply from another participant.”5 By analyzing 12-weeks of messages on an online forum for cancer survivors with significant distress, Lewallen et al. found that greater message length, less use of second-person pronouns (e.g., you, your, yourself), and less use of positive emotion words were significantly associated with group members’ responsiveness.
Peers were more likely to respond to longer messages than those with lower word counts. The researchers explained that participants were more responsive to those who seemed open to share details of their personal experiences in the forum. Longer messages also represent greater investment in the group, and provide more details about the authors for discussion. Interestingly, participants were less likely to reply to posts containing a greater proportion of second-person pronouns. Examples included “I hope things get better for you” and “I find myself thinking of you often and what you are going through.” The explanation proposed was that these messages did not provide necessary space or specifics to encourage further communication exchange, though they contain some emotional comfort to message receivers. In addition, group members preferred to respond to messages containing less positive emotion (e.g., “I don’t feel well today”) than positive emotion (e.g. “I feel better today”), which may be understood by peers that the member has less need for support.
As one in four Internet users with a chronic condition seek others who might share similar health concerns, online peer support interventions have a significant role in improving patients’ health.6 Understanding patterns of online communication as well as barriers to engagement, is critical to maintaining active, effective, and sustainable peer support groups. Importantly, Internet-based interventions for patients with cancer or other chronic conditions should be developed using a patient-based approach that considers participants’ opinions, preferences, and communication characteristics. When patients’ needs and psychological determinants of engagement are fully understood, the interventions can be tailored to enhance patient engagement and maximize the benefits of online support groups.
- Gorlick A., Bantum E.O. & Owen J.E (2013). Internet-based interventions for cancer-related distress: Exploring the experience of those whose needs are not met. Psycho-Oncology.
- Han J.Y., Kim J.H., Shim M., McTavish F.M. & Gustafson D.H. (2012). Social and psychological determinants of levels of engagement with an online breast cancer support group: Posters, lurkers, and nonusers. Journal of Health Communication, 17:365–371
- Han J.Y., Hou J. & Kim E. (2014). Lurking as an active participation process: A longitudinal investigation of engagement with an online cancer support group. Health Communication.
- Wen M. & Rose C.P. (2012). Understanding participant behavior trajectories in online health support group using automatic extraction methods. GROUP ’12 Proceedings of the 17th ACM international conference on Supporting group work.
- Lewallen, A.C., Owen J.E., Bantum E.O., & Stanton A.L. (2014). How language affects peer responsiveness in an online cancer support group: Implications for treatment design and facilitation. Psycho-Oncology.
- Fox S. (2011). Peer-to-peer healthcare. Pew Research Center, Pew Internet & American Life Project.