Exploring Iranian β-Thalassemia major patients’ perception of barriers and facilitators of adherence to treatment: A qualitative study

Background Despite the clinical importance of adherence to treatment in β-Thalassemia Major (β-TM) patients, poor adherence remains a prevalent and persistent problem in these patients. Objective The aim of this study was to explore Iranian β-TM patients' perception regarding the barriers and facilitators of adherence to their treatments. Methods In this qualitative study, data were collected using purposeful sampling and semi-structured interviews with 18 β-TM patients, 3 family members and 5 healthcare professionals (total=26) in Sari, northern Iran, between August 2015 and May 2017. Data were analyzed using conventional content analysis with the support of MAXQDA software. All the interviews were transcribed verbatim. Data were coded and grouped under specific categories. Results We identified and classified the perceived barriers of patients' adherence to treatment into six main categories including: (I) long distance challenges, (II) delayed occurrence of complications, (III) fatigue of healthcare providers, (IV) staff workload, (V) insufficient follow-up of healthcare workers, and (VI) busy everyday life. Also, nine main categories emerged as facilitators including: (I) concern of appearance changing, (II) outcomes of treatment, (III) good awareness, (IV) parental monitoring, (V) fear of complications, (VI) social activity, (VII) marriage as a facilitator, (VIII) friendly interaction with the medical staff, and (IX) trusting the medical staff. Conclusion Our findings provide a broad range of context-specific facilitators and barriers to treatment adherence perceived by Iranian β-TM patients. These factors improve our understanding of the complex and multifactorial nature of adherence to treatments. Health care providers can use these findings in designing and implementing appropriate interventions to promote β-TM patients' adherence to treatment.