Most psychosocial research on Muscular Dystrophy (MD) has used qualitative interviews and self-report assessments of quality of life (QoL), showing that MD patients have lower QoL than controls. However, relatively few studies have identified additional psychosocial factors relevant to MD beyond QoL. This study aims to identify some of the potential processes underlying poor QoL for people in the MD community using a content analysis.
We analyzed posts from an online MD subreddit; top posts should contain content which is broadly representative of the concerns of MD patients and their loved ones. Top subreddit posts (excluding reposts) were cleaned and analyzed using a linguistic content analysis program (LIWC), which has been validated for qualitative and quantitative psychological and health contexts. Between-group and within-group differences were evaluated using parametric (e.g., t) and non-parametric (e.g., Mann-Whitney U) tests.
Compared to typical reddit posts, MD subreddit posts (N=241) contained significantly more mentions of emotion (particularly negative emotion, anxiety, and sadness), health (e.g., illness, wellness, mental health, and fatigue), and prosocial content (e.g., helping behavior). They also had fewer mentions of substance use. Additionally, within these top posts, the content varied depending on the poster. Loved ones (N=55) were more likely to write posts with positive social content, whereas people with MD (N=152) were more likely to write posts with a negative tone, more mentions of ability, feelings, stress, sensory pain, and reclusive behavior.
This study is a meaningful step forward towards understanding the concerns of people with MD and their loved ones. The results provide insight into factors which may be contributing to lower QoL, including social support and positive emotional interactions. Future research should continue to explore the biopsychosocial factors which lead to lower QoL for MD patients, in the hopes of identifying modifiable targets for resilience in this population.