Insights on mental health when living with rheumatoid arthritis: a descriptive qualitative study of threads on the Reddit website

Abstract

Background Reddit is a highly visited social news and discussion website where individuals anonymously ask questions, post opinions and share experiences, which provide a valuable pool of publicly available data. Our objective was to systematically search and analyze threads on the social news website, Reddit, to understand experiences of individuals with rheumatoid arthritis (RA) regarding their mental health. Methods We conducted a patient-oriented descriptive qualitative study. We identified threads from two subreddits, “r/Thritis” and “r/Rheumatoid”, using keywords such as “mood”, “mental health”, “stressed”, “depressed”, “anxious” over a 1-year period between June 2018 and June 2019. For included threads, we extracted the title, original post, and corresponding comments and responses. We applied thematic analysis using an inductive approach. Results Of 81 threads identified, we included 27. We identified four themes: 1) Navigating the management of RA explores how the physical impacts of the disease, lack of health resources/support and the complexity of medications affect mental health; 2) Experiencing impact on relationships and social isolation includes experiencing misconceptions of RA, feeling misunderstood and feeling guilt; 3) Experiencing loss, touches on the helplessness brought by challenges with performing self-defining activities such as self-care, work, and childbearing/parenting; and finally, 4) Experiencing emotional struggles captures how tension between fighting through and despair has led some to suicide ideation and thoughts of death. Conclusions Online forums and communities such as Reddit have created opportunities for individuals with RA to share experiences on mental health matters, which they may not necessarily be able to share with others.

Studies of Depression and Anxiety Using Reddit as a Data Source: Scoping Review

“…Perhaps unsurprisingly, the 4% (2/54) of studies that collected original data sets using neither the Reddit API nor Pushshift were qualitative studies using smaller data sets. To illustrate, Park et al [ 61 ] used the Reddit search function to collect a sample of 81 discussion threads for qualitative descriptive analysis, whereas the Maxwell [ 56 ] qualitative study used Google Search to identify a single discussion thread consisting of 1 post and 294 comments, with which Maxwell et al [ 56 ] performed an in-depth thematic analysis.…”

“…Among the 15 studies in this category that used ML and/or NLP, Reddit text was most often processed into features through assignment into categories from the Linguistic Inquiry and Word Count mental health lexicon (7/18, 39%) by using term frequency–inverse document frequency vectors (4/18, 22%) and by processing text into readability metrics (2/18, 11%). Of the 18 studies, 3 (17%) purely qualitative studies examined depression and anxiety in the context of Reddit discussion threads about rheumatoid arthritis [ 61 ], fathers’ experiences with postpartum depression [ 56 ], and the effectiveness of mobile mental health apps [ 40 ].…”

“…Finally, 10% (3/30) of studies featuring practice implications suggested incorporating the study findings into formal patient education. To illustrate, the Park et al [ 61 ] qualitative study of depression and anxiety in the context of rheumatoid arthritis positioned study findings as potentially contributing to improved practical recommendations to guide health care within rheumatology. In summary, 56% (30/54) of the included studies mentioned practice implications that went beyond theoretical implications or recommendations for future research.…”

“…Qualitative research designs offer another methodological path to broaden the conceptualizations of depression and anxiety while also introducing limits to the scope and depth of analysis feasible for the human instrument in a single study. It stands that the qualitative designs included in this review were oriented to smaller, context-driven analyses, for example, understanding the meanings of depression in the context of other conditions such as rheumatoid arthritis [ 61 ].…”

Correlation of Depression and Anxiety With Rheumatoid Arthritis

“…Doctors commonly skip the evaluation of a patient’s mental state during routine checkups for RA, often due to the scarcity of resources, limited time, or the idea that psychological evaluation should be done by a psychiatrist. Patients of RA suffering from undiagnosed psychiatric comorbidity have a much harder time understanding the disease, making it all the more difficult for them to adhere to treatments and cope with the complexities of the disease [ 26 ]. Patients of RA with depression or anxiety often find it difficult to make decisions regarding their health and fail to follow treatment protocols.…”