Patients’ Characterization of Medication, Emotions, and Incongruent Perceptions around Adherence

Medication nonadherence is prevalent among patients with chronic diseases. Previous research focused on patients’ beliefs in medication or illness and applied risk-benefit analyses when reasoning their behavior. This qualitative study examined rheumatoid arthritis (RA) patients’ perceptions and feelings toward medication in parallel with attitudes about their own adherence. We conducted four 90-min focus groups and seven 60-min interviews with a diverse sample of RA patients (n = 27). Discussions covered dilemmas encountered, emotions, and thought process concerning medication, and included application of projective techniques. Transcripts were analyzed in NVivo-12 using a thematic coding framework through multiple rounds of deduction and categorization. Three themes emerged, each with mixed sentiments. (1) Ambivalent feelings toward medication: participants experienced internal conflicts as their appreciation of drugs for relief contradicted worries about side effects or “toxicity” and desire to not identify as sick, portraying medications as “best friend” and “evil”. (2) Struggles in taking medication: participants “hated” the burden of managing regimen and resented the reliance and embarrassment. (3) Attitudes and behavior around adherence: most participants self-reported high adherence yet also described frequently self-adjusting medications, displaying perception-action incongruency. Some expressed nervousness and resistance while others felt empowered when modifying dosage, which might have motivated or helped them self-justify nonadherence. Only a few who deviated from prescription discussed it with their clinicians though most participants expressed the desire to do so; open communication with providers reinforced a sense of confidence and control of their own health. Promoting personalized care with shared decision-making that empowers and supports patients in managing their long-term treatment could encourage adherence and improve overall health outcome.