Online Community-Based Coping Strategies Among Individuals Affected by Hereditary Diseases: An Exploratory Analysis

Abstract

Abstract: This study investigated the lived experiences of individuals who have either received a "carrier" result for a hereditary disease through predictive genetic testing or are confronted with the prospect of undergoing such testing. In navigating the complexities and emotional challenges associated with the testing process and resultant disclosure, participants often sought information, guidance, and support through online platforms to aid decision-making and emotional adjustment. This research used Reddit as a source to understand the coping strategies that these individuals use in online spaces. To analyse these interactions, we conducted a thematic analysis of the posts made in various hereditary diseases subreddits. Both posts and replies have been used for this analysis to study the interactions between users. These interactions allow the users to talk about frightening, sensitive, embarrassing and/or taboo experiences which potentially reduce the psychological impact of their experiences facilitating a sense of individual and collective empowerment in a context where people can feel powerless. By building a cohesive and supportive community, coping is not only possible at an individual level but also as a communal effort. The collective exchange of experiences and the joint exploration of potential solutions to the challenges posed by illness exemplify communal coping, where in individuals appraise the illness as a shared concern and collaborate to address its demands, thereby fostering mutual support and group resilience. This study shows the efficacy of online community-based interventions in addressing the multifaceted challenges associated with hereditary diseases. These interventions leverage the online community as a critical psychosocial resource, functioning as a platform for the provision of emotional support, a forum for articulating personal health concerns, and a network through which individuals affected by similar genetic conditions can seek and offer reciprocal support. In these virtual environments, members engage in mutual aid, sharing experiential knowledge and coping strategies that promote psychological resilience and enhance disease management. Such platforms not only facilitate the dissemination of condition-specific information but also engender a sense of communal belonging, mitigating patient isolation and fostering empowerment through collective understanding and solidarity.