From Concealment to Liberation: Examining the Impact of Online Health Community Design on Well-Being through Self-Disclosure among Individuals with Stigmatized Identities

Online health communities (OHCs) have emerged as platforms that allow individuals to seek informational and emotional support. OHCs are ideal spaces for individuals with concealable stigmatized identities (e.g., characteristics that can be hidden from others and that would be socially devalued or negatively stereotyped if revealed) to practice self-disclosure, such as by revealing their thoughts, feelings, and experiences pertaining to mental illness stigmatization. These acts of disclosure permit community members to offer suitable advice and exhibit empathetic comprehension of stigmatization experiences.

Concealing a stigmatized identity associated with mental illness can detrimentally affect suffering individuals, such as by delaying diagnosis and treatment. However, revealing the stigmatized identity can also lead to problems both at work and in social relationships, such as being subjected to discrimination. Managing the potential impacts of these concealable stigmatized identities exposes individuals to constant stress. Although practicing self-disclosure in OHCs might mitigate this stress, the design of OHCs can create a paradoxical situation in their disclosure of stigmatized conditions.

The proposed project will build on the disclosure process model and the online community framework to understand how self-disclosure within OHCs fosters well-being among individuals with concealable stigmatized identities. Specifically, we will explore how the key components of OHCs (i.e., people, purposes, policies, and software) can be designed to support two overarching design qualities, namely usability and sociability, and how these can be used to support the disclosure process. We will explore our hypothesis that disclosing one’s concealable stigmatized identities within OHCs produces positive impacts on individual well-being through the mediating mechanisms of social connectedness, self-acceptance, and the exchange of social information.

A preliminary analysis of two popular OHCs (specifically, mental health sub-communities) provided evidence for the significance of OHC design on members’ disclosure activities. In the proposed project, guided by the conceptual framework, we will utilize multiple data collection and analysis methods, including a netnography study (Study 1) and a longitudinal survey (Study 2), to examine the self-disclosure mechanisms. Particularly, we will reveal the impact of online community design on self-disclosure and well-being among individuals with concealable stigmatized identities.

Our proposed project will advance the literature by (1) offering a theoretical explanation of and empirical evidence for how OHCs foster well-being among individuals with concealable stigmatized identities and (2) providing a novel perspective to understand participatory behaviors in OHCs. Furthermore, the lessons learned will offer courses of action for new initiatives aimed at improving OHC platforms so they can be used as a potential coping resource to supplement medical treatment for mental health illness.