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26-04-2017 | Rheumatoid arthritis | Article

“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

Journal: BMC Health Services Research

Authors: Boitshoko Kobue, Shirra Moch, Jennifer Watermeyer

Publisher: BioMed Central

Abstract

Background

Patients 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.

Methods

We 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.

Results

Participants 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.

Conclusions

Medicine 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.

Vrijens B, De Geest S, Hughes DA, Przemyslaw K, Demonceau J, Ruppar T, Dobbels F, Fargher E, Morrison V, Lewek P, Matyjaszczyk M, Mshelia C, Clyne W, Aronson JK, Urquhart J, ABC Project Team. A new taxonomy for describing and defining adherence to medications. Br J Clin Pharmacol. 2012;73(5):691–705.PubMedPubMedCentralCrossRef

Felzmann H. Adherence, compliance, and concordance; an ethical perspective. Nurse Prescribing. 2012;10(8):406–11.CrossRef

Mathes T, Jaschinski T, Pieper D. Adherence influencing factors – a systematic review of systematic reviews. Arch Public Health. 2014;72(1):37.PubMedPubMedCentralCrossRef

Martin L. Barriers and keys to treatment adherence and health behaviour change. In: Martin L, DiMatteo MR, editors. The Oxford handbook of health communication, behavior change, and treatment adherence. New York: Oxford University Press; 2013. p. 9–22.CrossRef

Toh CT, Jackson B, Gascard DJ, Manning AR, Tuck EJ. Barriers to medication adherence in chronic heart failure patients during home visits. J Pharm Pract Res. 2010;40(1):27–30.CrossRef

Elliott RA, Ross-Degnan D, Adams AS, Safran DG, Soumerai SB. Strategies for coping in a complex world: adherence behavior among older adults with chronic illness. J Gen Intern Med. 2007;22(6):805–10.PubMedPubMedCentralCrossRef

Conrad P. The meaning of medications: another look at compliance. Soc Sci Med. 1985;20(1):29–37.PubMedCrossRef

Lehane E, McCarthy G. Medication non-adherence--exploring the conceptual mire. Int J Nurs Pract. 2009;15(1):25–31.PubMedCrossRef

Pound P, Britten N, Morgan M, Yardley L, Pope C, Daker-White G, Campbell R. Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc Sci Med. 2005;61(1):133–55.PubMedCrossRef

10.

Clifford S, Barber N, Horne R. Understanding different beliefs held by adherers, unintentional nonadherers, and intentional nonadherers: application of the necessity–concerns framework. J Psychosom Res. 2008;64(1):41–6.PubMedCrossRef

11.

Barry CA, Stevenson FA, Britten N, Barber N, Bradley CP. Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. Soc Sci Med. 2001;53(4):487–505.PubMedCrossRef

12.

Penn C, Watermeyer J, Evans M. Why don’t patients take their drugs? The role of communication, context and culture in patient adherence and the work of the pharmacist in HIV/AIDS. Patient Educ Couns. 2011;83(3):310–8.PubMedCrossRef

13.

Germond P, Cochrane JR. Healthworlds: conceptualizing landscapes of health and healing. Sociology. 2010;44(2):307–24.CrossRef

14.

Dohnhammar U, Reeve J, Walley T. Patients’ expectations of medicines – a review and qualitative synthesis. Health Expect. 2015. doi:10.1111/hex.12345.

15.

Munro S, Lewin S, Swart T, Volmink J. A review of health behaviour theories: how useful are these for developing interventions to promote long-term medication adherence for TB and HIV/AIDS? BMC Public Health. 2007;7:104. doi:10.1186/1471-2458-7-104.PubMedPubMedCentralCrossRef

16.

Homer D, Nightingale P, Jobanputra P. Providing patients with information about disease-modifying anti-rheumatic drugs: Individually or in groups? A randomized controlled trial comparing adherence and satisfaction. Musculoskeletal Care. 2009;7(2):78–92.PubMedCrossRef

17.

Watermeyer J, Penn C. “Tell me so I know you understand”: pharmacists’ verification of patients’ comprehension of antiretroviral dosage instructions in a cross-cultural context. Patient Educ Couns. 2009;75:205–13.PubMedCrossRef

18.

Denford S, Frost J, Dieppe P, Cooper C, Britten N. Individualisation of drug treatments for patients with long-term conditions: a review of concepts. BMJ Open. 2014;4(3):e004172.PubMedPubMedCentralCrossRef

19.

Zolnierek KB, Dimatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009;47(8):826–34.PubMedCrossRef

20.

Smolen JS, Landewé R, Breedveld FC, Buch M, Burmester G, Dougados M, Emery P, Gaujoux-Viala C, Gossec L, Nam J, Ramiro S, Winthrop K, de Wit M, Aletaha D, Betteridge N, Bijlsma JW, Boers M, Buttgereit F, Combe B, Cutolo M, Damjanov N, Hazes JM, Kouloumas M, Kvien TK, Mariette X, Pavelka K, van Riel PL, Rubbert-Roth A, Scholte-Voshaar M, Scott DL, Sokka-Isler T, Wong JB, van der Heijde D. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update. Ann Rheum Dis. 2014;73(3):492–509.PubMedCrossRef

21.

Gómez-Reino JJ, Carmona L, Valverde VR, Mola EM, Montero MD, BIOBADASER Group. Treatment of rheumatoid arthritis with tumor necrosis factor inhibitors may predispose to significant increase in tuberculosis risk: a multicentre active-surveillance report. Arthritis Rheum. 2003;48(8):2122–7.PubMedCrossRef

22.

Elliott RA. Poor adherence to medication in adults with rheumatoid arthritis: reasons and solutions. Dis Manag Health Out. 2008;16(1):13–29.CrossRef

23.

Kaur A, Nain P, Nain J. Herbal plants used in the treatment of rheumatoid arthritis: a review. Int J Pharm Pharm Sci. 2012;4 Suppl 4:44–57.

24.

Schneider M, Manabile E, Tikly M. Social aspects of living with rheumatoid arthritis: a qualitative descriptive study in Soweto, South Africa - a low resource context. Health Qual Life Outcomes. 2008;6:54. doi:10.1186/1477-7525-6-54.PubMedPubMedCentralCrossRef

25.

Hodkinson B, Musenge E, Ally M, Meyer PWA, Anderson R, Tikly M. Response to traditional disease-modifying anti-rheumatic drugs in indigent South Africans with early rheumatoid arthritis. Clin Rheumatol. 2012;31(4):613–9.PubMedCrossRef

26.

Kumar K, Gorgon C, Barry R, Shaw K, Horne R, Raza K. “It’s like taking poison to kill poison but I have to get better”: a qualitative study of the beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus in patients of South Asian origin. Lupus. 2011;20(8):837–44.PubMedCrossRef

27.

Picchianti-Diamanti A, Germano V, Ferlito C, Migliore A, D’Amelio R, Lagana B. Health related quality of life and disability in patients with rheumatoid, early rheumatoid and early psoriatic arthritis treated with etanercept. Qual Life Res. 2010;19(6):821–6.PubMedCrossRef

28.

Mody GM, Cardiel MH. Challenges in the management of rheumatoid arthritis in developing countries. Best Pract Res Clin Rheumatol. 2008;22(4):621–41.PubMedCrossRef

29.

Coovadia H, Jewkes R, Barron P, Sanders D, McIntyre D. The health and health system of South Africa: historical roots of current public health challenges. Lancet. 2009;374(9692):817–34.PubMedCrossRef

30.

Deumert A. ‘It would be nice if they could give us more language’ – Serving South Africa’s multilingual patient base. Soc Sci Med. 2010;71(1):53–61.PubMedCrossRef

31.

Peltzer K. Utilization and practice of Traditional/Complementary/Alternative medicine (TM/CAM) in South Africa. Afr J Tradit Complement Altern Med. 2009;6(2):175–85.PubMedPubMedCentral

32.

Moshabela M, Pronyk P, Williams N, Schneider H, Lurie M. Patterns and implications of medical pluralism among HIV/AIDS patients in rural South Africa. AIDS Behav. 2011;15(4):842–52.PubMedPubMedCentralCrossRef

33.

Kobue BO. Factors affecting medication adherence in rheumatoid arthritis. Unpublished Masters dissertation. University of the Witwatersrand, Johannesburg, South Africa. 2013. Available from the Wits Institutional Repository environment on DSpace (WIReDSpace). http://146.141.12.21/handle/10539/14581. Accessed Apr 2017.

34.

van Vollenhoven RF. Sex differences in rheumatoid arthritis: more than meets the eye…. BMC Med. 2009;7:12. doi:10.1186/1741-7015-7-12.PubMedPubMedCentralCrossRef

35.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef

36.

Heaton J. Reworking qualitative data. London: Sage; 2004.CrossRef

37.

Spencer L, Ritchie J, Ormston R, O’Connor W, Barnard M. Analysis: principles and processes. In: Ritchie J, Lewis J, McNaughton Nicholls C, Ormston R, editors. Qualitative research practice: a guide for social science students and researchers. 2nd ed. London: Sage; 2014.

38.

Eickhoff C, Hammertein A, Griese N, Schulz M. Nature and frequency of drug-related problems in self-medication (over the counter drugs) in daily community pharmacy practice in Germany. Pharmacoepidemiol Drug Saf. 2012;21(3):254–60.PubMedCrossRef

39.

Brooker C. Pocket Medical Dictionary, 15th ed. London: Churchill Livingstone; 2003.

40.

Tong A, Howell M, Wong G, Webster A, Howard K, Craig JC. The perspectives of kidney transplant recipients on medicine taking: a systematic review of qualitative studies. Nephrol Dial Transplant. 2011;26(1):344–54.PubMedCrossRef

41.

Bennin F, Rother HA. “But it’s just paracetamol”: caregivers’ ability to administer over-the-counter painkillers to children with the information provided. Patient Educ Couns. 2015;98(3):331–7.PubMedCrossRef

42.

Monroe AK, Rowe TL, Moore RD, Chander G. Medication adherence in HIV-positive patients with diabetes or hypertension: a focus group study. BMC Health Serv Res. 2013;13:488. doi:10.1186/1472-6963-13-488.PubMedPubMedCentralCrossRef

43.

Hsu C, Lemon JM, Wong ES, Carson-Cheng E, Perkins M, Nordstrom MS, Liu CF, Sprague C, Bryson CL. Factors affecting medication adherence: patient perspectives from five veterans affairs facilities. BMC Health Serv Res. 2014;14:533. doi:10.1186/s12913-014-0533-1.PubMedPubMedCentralCrossRef

44.

Rifkin DE, Laws MB, Rao M, Balakrishnan VS, Sarnak MJ, Wilson IB. Medication adherence behaviour and priorities among older adults with CKD: a semi-structured interview study. Am J Kidney Dis. 2010;56(3):439–46.PubMedPubMedCentralCrossRef

45.

Leventhal H, Diefenbach M, Leventhal EA. Illness cognition: using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res. 1992;16(2):143–63.CrossRef

46.

Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M. Finding common ground: patient-centeredness and evidence based chronic illness care. J Altern Complement Med. 2005;11 Suppl 1:S7–15.PubMed

47.

Child S, Goodwin VA, Perry MG, Gericke CA, Byng R. Implementing a patient-initiated review system in rheumatoid arthritis: a qualitative evaluation. BMC Health Serv Res. 2015;15:157. doi:10.1186/s12913-015-0837-9.PubMedPubMedCentralCrossRef

48.

Bell JS, Airaksinen MS, Lyles A, Chen TF, Aslani P. Concordance is not synonymous with compliance or adherence. Br J Clin Pharmacol. 2007;64(5):710–11.PubMedPubMedCentralCrossRef

49.

Dowell J, Williams B, Snadden D. Patient-centered prescribing: seeking concordance in practice. Oxford: Radcliffe Publishing; 2007. p. 16–8.

50.

Lempp H, Scott DL, Kingsley GH. Patients’ views on the quality of health care for rheumatoid arthritis. Rheumatology (Oxford). 2006;45(12):1522–8.CrossRef

51.

Crawford P, Brown B. Fast healthcare: brief communication, traps and opportunities. Patient Educ Couns. 2011;82(1):3–10.PubMedCrossRef

52.

Koenig CJ, Ho EY, Trupin L, Dohan D. An exploratory typology of provider responses that encourage and discourage conversation about complementary and integrative medicine during routine oncology visits. Patient Educ Couns. 2015;98(7):857–63.PubMedPubMedCentralCrossRef