“It’s so hard taking pills when you don’t know what they’re for”: a qualitative study of patients’ medicine taking behaviours and conceptualisation of medicines in the context of rheumatoid arthritis

Abstract

BackgroundPatients with chronic illnesses are often required to take lifelong medication to alleviate symptoms and prevent disease progression. Many patients find it difficult to adhere to prescribed medication for various reasons, some of which may link to the way they conceptualise medicines and understand their illness and treatment. This study explores the medicine taking behaviours of patients presenting with Rheumatoid Arthritis (RA), a chronic inflammatory autoimmune disease. We focused particularly on patients’ conceptualisation and understanding of medicines within this disease context, against a backdrop of scarce healthcare resources.MethodsWe conducted semi-structured interviews with 18 female patients at a rheumatology clinic in South Africa, as well as a review of participants’ medical records. We conducted a secondary analysis of the data using thematic analysis and framework analysis principles.ResultsParticipants reported a range of medicine taking behaviours including self-medicating, adding complementary and alternative medicines (CAM) or traditional remedies, and sometimes acquiring prescribed medicines illegally. Participants provided insights into their understanding of what constitutes a medicine and what substances can be added to a prescribed regimen, which impacted on adherence. Importantly, the majority of participants demonstrated poor understanding of their illness, medications, regimens and dosage instructions.ConclusionsMedicine taking in the context of RA, within the studied demographic, is complex and appears strongly mediated by individual and contextual factors. Poor patient understanding, individual conceptualisation of medicines and medicine taking, and the availability of a range of additional medicines and remedies impact on adherence. Based on these findings, we make some suggestions for how healthcare providers can play a greater role in educating patients living with RA about medicines, CAM and traditional remedies, as well as medicine taking behaviours.

Prevalence of methotrexate intolerance among patients with rheumatoid arthritis using the Arabic version of the methotrexate intolerance severity score

“…Patients tend to have a positive perception of MTX with some concerns . The development of adverse events and the fear of developing adverse events might affect adherence and willingness to continue therapy …”

How do I keep myself safe? Patient perspectives on including reason for use information on prescriptions and medication labels: a qualitative thematic analysis

“…Patients are increasingly being asked to manage many aspects of their care, including communicating health information between healthcare providers and maintaining records of their own health [6,7]. Numerous studies have indicated that patients are sometimes unaware or incorrect about why they are taking a particular medication [8,9]. Adding RFU to medication labels would allow patients to always have RFU along with their medications and could improve adherence to prescribed medication treatments [6].…”

Access and use of medicines by elderly individuals with dementia

“…On the other hand, social anthropological literature conceives the term therapeutic itinerary as individuals or groups' actions towards health recovery, which may mobilize different resources, including homemade remedies (Cabral et al, 2011). The literature already addresses the theme of selfadjustment of drug therapy by patients (Waheedi et al, 2017;Kobue, Moch, Watermeyer, 2017, Laue, Melbye, Risør, 2017. However, few discussions address how this phenomenon occurs from caregivers perspective, which reinforces the importance of this study results.…”