Patterns of Patient and Caregiver Mutual Support Connections in an Online Health Community

Abstract

Online health communities offer the promise of support benefits to users, in particular because these communities enable users to find peers with similar experiences. Building mutually supportive connections between peers is a key motivation for using online health communities. However, a user's role in a community may influence the formation of peer connections. In this work, we study patterns of peer connections between two structural health roles: patient and non-professional caregiver. We examine user behavior in an online health community---CaringBridge.org---where finding peers is not explicitly supported. This context lets us use social network analysis methods to explore the growth of such connections in the wild and identify users' peer communication preferences. We investigated how connections between peers were initiated, finding that initiations are more likely between two authors who have the same role and who are close within the broader communication network. Relationships---patterns of repeated interactions---are also more likely to form and be more interactive when authors have the same role. Our results have implications for the design of systems supporting peer communication, e.g. peer-to-peer recommendation systems.

The Online Authenticity Paradox: What Being "Authentic" on Social Media Means, and Barriers to Achieving It

“…While online authenticity will remain elusive, such afordances and features may bring social media users closer to genuine self-presentation along with network and content separation. Each of these design implications have been suggested in previous work (e.g., [47,52,67,80]), yet expounding the online authenticity paradox provides new insight on how they may be implemented. We describe how each of these design implications helps to either resolve or provide alternative solutions to the challenges the online authenticity paradox highlights, and may enable people to uphold their conception of authenticity as an important personal value.…”

“…This separation can be accomplished via multiple accounts on one platform [68], each of which is tailored for a particular imagined audience [55], or by using privacy afordances to segment content to only some parts of a large, diverse network [73], or by participating in communities in separate online spaces [35,51]. Especially in health contexts, people with similar conditions or diagnoses tend to gather in online spaces where they can share with, form connections with, and receive support from similar others [24,25,47,51,52,67,80]. Additionally, LGBTQ+ people often manage context collapse by tailoring their identity presentations to particular audiences, such as those to whom they have and have not disclosed their LGBTQ+ identity, and by maintaining separate online audiences for these diferent identity performances [20,23].…”

“…Connecting people with similar experiences and identities. Platforms could better enable users to easily fnd people facing similar situations (in the past or the present), both within and outside their typical online networks (drawing from design recommendations for peer connection and support described in previous work [3,24,25,47,52,66,67]). Features that visualize the prevalence of negative or stigmatized life events may alleviate stress and assure users that they are not the only one in the situation [2].…”

Effective Strategies for Crowd-Powered Cognitive Reappraisal Systems: A Field Deployment of the Flip*Doubt Web Application for Mental Health

“…For example, Andalibi & Flood interviewed users of Buddy Project, which connects anonymous youths struggling with mental health [4]. Unlike physical illnesses such as cancer [32,51,89] or rare diseases [52], where research has established that matching based on condition is a crucial goal, [4] found that users should be paired based on shared interests or identity, rather than mental health diagnoses, since over-exposure to the same mental illness can lead to unhealthy comparisons or disordered coping mechanisms. O'Leary et al also affirm the necessity of matching peers based on similarities beyond mental health diagnosis, as well as improving the accessibility of interventions, and proactively providing training to users in order to mitigate risks [67].…”

“…Our results suggest that relatability may be one factor affecting reframe quality. Rather than random matching (as in Flip*Doubt and Koko), matching users based on shared contextual aspects of their lives or identities [4,51,67,88], or allowing users to identify people they'd like to interact with again, may improve reframe quality by allowing crowd workers to better understand the specific context of the task [82]. (2) Selecting 𝑁 .…”