Medication adherence: a qualitative exploration of the experiences of adolescents with systemic lupus erythematosus

There are increasing numbers of children diagnosed with systemic lupus erythematosus (SLE). Given the chronicity of the disease, individuals are confronted with cocktails of medications for an extended period. The present study explores experiences in medication adherence among adolescents with SLE in an acute care hospital.

A descriptive qualitative design was employed. Fourteen adolescents with SLE were purposively selected. Face-to-face audio-recorded semi-structured interviews were conducted. Field notes and reflexive journals were maintained, and frequent debriefing sessions were performed to ensure the study's methodological rigour. Interviews were transcribed verbatim and thematic analyses were used. Constant comparative analysis was used to identify similarities and differences among the participants.

Four themes emerged from interviews: (1) making sense of the treatment; (2) contending with side effects of medications; (3) maintaining networks of support; and (4) creating a new normal. The participants were motivated to adhere to medications when they developed awareness, received social support from family and friends and created routines for new normal when confronted with their diseases. However, some attributed a lack of parental support, poor doctor-patient relationships and the large numbers of medications as deterrence to medication adherence.

This study highlights various medication-taking motivators and deterrents. Interdependent relationships between motivators and deterrents determine medication-taking behaviours. Findings from this multi-ethnic group of individuals of various ages and religious faith across the disease trajectory provide a deep insight into adolescents' experiences of medication adherence. This can contribute to the development of unique interventions for such individuals. Key points • Adolescents with systemic lupus erythematosus struggle with conforming to cocktails of medications. • A variety of factors either facilitate or impede their decisions to adhere to medication regimes. • Results suggest that tackling medication adherence among adolescents requires a multi-pronged approach from individual, familial and medical perspectives.