241
Views
0
CrossRef citations to date
0
Altmetric
Research Article

“I think most people feel like healthcare professionals tell them to take their treatments and judge them for not taking them”: reflexive thematic analysis of the views of adults with cystic fibrosis on how treatment adherence is discussed in healthcare

ORCID Icon, ORCID Icon, ORCID Icon, & ORCID Icon
Received 10 Jan 2023, Accepted 27 Aug 2023, Published online: 04 Sep 2023

References

  • Arden, M. A., Drabble, S., O’Cathain, A., Hutchings, M., & Wildman, M. (2019). Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework. British Journal of Health Psychology, 24(2), 357–380. https://doi.org/10.1111/bjhp.12357
  • Arden, M. A., Hutchings, M., Whelan, P., Drabble, S. J., Beever, D., Bradley, J. M., Hind, D., Ainsworth, J., Maguire, C., Cantrill, H., O’Cathain, A., & Wildman, M. (2021). Development of an intervention to increase adherence to nebuliser treatment in adults with cystic fibrosis: CFHealthHub. Pilot and Feasibility Studies, 7(1), 1. https://doi.org/10.1186/s40814-020-00739-2
  • British Broadcasting Corporation (BBC). (2022). NHS spending: How much money does it need? https://www.bbc.co.uk/news/health-59865822
  • Bell, S. C., Mall, M. A., Gutierrez, H., Macek, M., Madge, S., Davies, J. C., Burgel, P.-R., Tullis, E., Castaños, C., Castellani, C., Byrnes, C. A., Cathcart, F., Chotirmall, S. H., Cosgriff, R., Eichler, I., Fajac, I., Goss, C. H., Drevinek, P., Farrell, P. M., … Ratjen, F. (2020). The future of cystic fibrosis care: A global perspective. The Lancet. Respiratory Medicine, 8(1), 65–124. https://doi.org/10.1016/S2213-2600(19)30337-6
  • Braun, V., & Clarke, V. (2019a). Answers to frequently asked questions about thematic analysis. https://cdn.auckland.ac.nz/assets/psych/about/our-research/documents/Answers%20to%20frequently%20asked%20questions%20about%20thematic%20analysis%20April%202019.pdf
  • Braun, V., & Clarke, V. (2019b). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
  • Braun, V., & Clarke, V. (2021). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health, 13(2), 201–216. https://doi.org/10.1080/2159676X.2019.1704846
  • Braun, V., & Clarke, V. (2022). Thematic analysis: A practical guide. Sage.
  • Britto, M. T., Kotagal, U. R., Hornung, R. W., Atherton, H. D., Tsevat, J., & Wilmott, R. W. (2002). Impact of recent pulmonary exacerbations on quality of life in patients with cystic fibrosis. Chest, 121(1), 64–72. https://doi.org/10.1378/chest.121.1.64
  • Brunton, S. (2017). I have never liked the term “compliance.” Clinical Diabetes : A Publication of the American Diabetes Association, 35(2), 76–77. https://doi.org/10.2337/cd17-0010
  • Bull, E. R., & Dale, H. (2021). Improving community health and social care practitioners’ confidence, perceived competence and intention to use behaviour change techniques in health behaviour change conversations. Health & Social Care in the Community, 29(1), 270–283. https://doi.org/10.1111/hsc.13090
  • Burgener, E. B., & Moss, R. B. (2018). Cystic fibrosis transmembrane conductance regulator modulators: Precision medicine in cystic fibrosis. Current Opinion in Pediatrics, 30(3), 372–377. https://doi.org/10.1097/MOP.0000000000000627
  • Butler, C. C., Pill, R., & Stott, N. C. H. (1998). Qualitative study of patients’ perceptions of doctors’ advice to quit smoking: Implications for opportunistic health promotion. BMJ (Clinical Research ed.), 316(7148), 1878–1881. https://doi.org/10.1136/bmj.316.7148.1878
  • Calthorpe, R. J., Smith, S. J., Rowbotham, N. J., Leighton, P. A., Davies, G., Daniels, T., Gathercole, K., Allen, L., Elliott, Z. C., & Smyth, A. R. (2020). What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment? BMJ Open Respiratory Research, 7(1), e000601. https://doi.org/10.1136/bmjresp-2020-000601
  • Campbell, J. I., Eyal, N., Musiimenta, A., & Haberer, J. E. (2016). Ethical questions in medical electronic adherence monitoring. Journal of General Internal Medicine, 31(3), 338–342. https://doi.org/10.1007/s11606-015-3502-4
  • CF Foundation Patient Registry. (2022, September). 2021 Annual Data Report. https://www.cff.org/media/23476/download
  • CF Trust. (2011, December). Standards for the clinical care of children and adults with cystic fibrosis in the UK. CF Trust. https://www.cysticfibrosis.org.uk/sites/default/files/2020-12/Cystic%20Fibrosis%20Trust%20Standards%20of%20care.pdf
  • CF Trust. (2018, September 18). How do we ensure the person is at the centre of their care? CF Trust. [Video]. https://www.cysticfibrosis.org.uk/video/nojs/4361
  • CF Trust. (n.d). Cystic fibrosis FAQs. CF Trust. https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/faqs#How%20common%20is%20cystic%20fibrosis
  • Cooper, A., & Swindell, B. (2021, June 18). The impact of language on people living with long-term conditions: Having the rug pulled out from underneath you. Evidently Cochrane. https://www.evidentlycochrane.net/the-impact-of-language-on-people-living-with-long-term-conditions/?mc_cid=2fd4b1b382&mc_eid=b28ec065be
  • Corkhill, B. (2018). Pain signals and other bad language! https://www.betsan.org/wp-content/uploads/2018/07/Pain-signals-and-other-bad-language.pdf
  • Cox, C., & Fritz, Z. (2022). Presenting complaint: Use of language that disempowers patients. BMJ, 377, e066720. https://doi.org/10.1136/bmj-2021-066720
  • Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ (Clinical Research ed.), 337, a1655. https://doi.org/10.1136/bmj.a1655
  • Daniels, T., Goodacre, L., Sutton, C., Pollard, K., Conway, S., & Peckham, D. (2011). Accurate assessment of adherence: Self-report and clinician report vs electronic monitoring of nebulizers. Chest, 140(2), 425–432. https://doi.org/10.1378/chest.09-3074
  • Dickinson, J. K., Guzman, S. J., Maryniuk, M. D., O’Brian, C. A., Kadohiro, J. K., Jackson, R. A., D’Hondt, N., Montgomery, B., Close, K. L., & Funnell, M. M. (2017). The use of language in diabetes care and education. Diabetes Care, 40(12), 1790–1799. https://doi.org/10.2337/dci17-0041
  • Dickinson, J. K., & Maryniuk, M. D. (2017). Building therapeutic relationships: Choosing words that put people first. Clinical Diabetes : A Publication of the American Diabetes Association, 35(1), 51–54. https://doi.org/10.2337/cd16-0014
  • Drabble, S. J., O’Cathain, A., Arden, M. A., Hutchings, M., Beever, D., & Wildman, M. (2019). When is forgetting not forgetting? A discursive analysis of differences in forgetting talk between adults with cystic fibrosis with different levels of adherence to nebulizer treatments. Qualitative Health Research, 29(14), 2119–2131. https://doi.org/10.1177/1049732319856580
  • Eakin, M. N., Bilderback, A., Boyle, M. P., Mogayzel, P. J., & Riekert, K. A. (2011). Longitudinal association between medication adherence and lung health in people with cystic fibrosis. Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society, 10(4), 258–264. https://doi.org/10.1016/j.jcf.2011.03.005
  • George, M., Rand-Giovannetti, D., Eakin, M. N., Borrelli, B., Zettler, M., & Riekert, K. A. (2010). Perceptions of barriers and facilitators: Self-management decisions by older adolescents and adults with CF. Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society, 9(6), 425–432. https://doi.org/10.1016/j.jcf.2010.08.016
  • Girling, C., Packham, A., Robinson, L., Arden, M. A., Hind, D., & Wildman, M. (2022). Implementing the use of objective medication adherence data in routine clinical practice via the digital CFHealthHub platform: Situation analysis and strategy development using the theoretical domains framework. Implementation Science Communications, 3(1), 12. https://doi.org/10.1186/s43058-022-00263-9
  • Haskard-Zolnierek, K. B., & DiMatteo, M. R. (2009). Physician communication and patient adherence to treatment: A meta-analysis. Medical Care, 47(8), 826–834. https://doi.org/10.1097/mlr.0b013e31819a5acc
  • Haynes, R. B., Sackett, D. L., & Taylor, D. W. (Eds.). (1979). Compliance in health care. Johns Hopkins University Press.
  • Heijerman, H. G. M., McKone, E. F., Downey, D. G., Van Braeckel, E., Rowe, S. M., Tullis, E., Mall, M. A., Welter, J. J., Ramsey, B. W., McKee, C. M., Marigowda, G., Moskowitz, S. M., Waltz, D., Sosnay, P. R., Simard, C., Ahluwalia, N., Xuan, F., Zhang, Y., Taylor-Cousar, J. L., … McCoy, K. S. (2019). Efficacy and safety of the elexacaftor plus tezacaftor plus ivacaftor combination regimen in people with cystic fibrosis homozygous for the F508del mutation: A double-blind, randomised, phase 3 trial. Lancet (London, England), 394(10212), 1940–1948. https://doi.org/10.1016/S0140-6736(19)32597-8
  • Hoffman, K. (2015, June 11). “Compliance?” “Adherence?” The language of medication taking. Medivizor. https://medivizor.com/blog/2015/06/11/language-of-medication-taking/
  • Hoo, Z. H., Totton, N., Waterhouse, S., Lewis, J., Girling, C., Bradburn, M., Arden, M. A., Whelan, P., Ainsworth, J., Dawson, S., Millward, S., Barnett, K., Dewar, J., Barr, H. L., Saini, G., Shepherd, E., Carroll, M., Allenby, M. I., Daniels, T. V., … Wildman, M. J. (2021). Real-world adherence among adults with cystic fibrosis is low: A retrospective analysis of the CFHealthHub digital learning health system. Chest, 160(6), 2061–2065. https://doi.org/10.1016/j.chest.2021.06.039
  • Horne, R., Weinman, J., Barber, N., Elliott, R., Morgan, M., & Cribb, A. (2005). Concordance, adherence and compliance in medicine taking: Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO). London: NCCSDO. https://www.ahpo.net/assets/NCCSDO%20Compliance%202005.pdf
  • Jackson, C., Eliasson, L., Barber, N., & Weinman, J. (2014). Applying COM-B to medication adherence. European Health Psychologist, 16, 7–17.
  • Kelly, M., & Barker, M. (2016). Why is changing health-related behaviour so difficult? Public Health, 136, 109–116. https://doi.org/10.1016/j.puhe.2016.03.030
  • Keyte, R., Kauser, S., Mantzios, M., & Egan, H. (2022). The psychological implications and health risks of cystic fibrosis pre- and post- CFTR modulator therapy. Chronic Illness, 3, 17423953221099042. https://doi.org/10.1177/17423953221099042
  • Knudsen, K. B., Boisen, K. A., Katzenstein, T. L., Mortensen, L. H., Pressler, T., Skov, M., & Jarden, M. (2018). Living with cystic fibrosis - a qualitative study of a life coaching intervention. Patient Preference and Adherence, 12, 585–594. https://doi.org/10.2147/ppa.s159306
  • Kok, G., Peters, G. Y., Kessels, L., Ten Hoor, G. A., & Ruiter, R. (2018). Ignoring theory and misinterpreting evidence: The false belief in fear appeals. Health Psychology Review, 12(2), 111–125. https://doi.org/10.1080/17437199.2017.1415767
  • Lask, B. (1994). Non-adherence to treatment in cystic fibrosis. Journal of the Royal Society of Medicine, 21(87), 25–27.
  • Mannion, R., & Davies, H. (2018). Understanding organisational culture for healthcare quality improvement. BMJ (Clinical Research ed.), 363, k4907. https://doi.org/10.1136/bmj.k4907
  • Maxwell, J. A. (2012). A realist approach to qualitative research. Sage.
  • Middleton, P. G., Mall, M. A., Dřevínek, P., Lands, L. C., McKone, E. F., Polineni, D., Ramsey, B. W., Taylor-Cousar, J. L., Tullis, E., Vermeulen, F., Marigowda, G., McKee, C. M., Moskowitz, S. M., Nair, N., Savage, J., Simard, C., Tian, S., Waltz, D., Xuan, F., Rowe, S. M., … Jain, R. (2019). Elexacaftor-tezacaftor-ivacaftor for cystic fibrosis with a single Phe508del allele. The New England Journal of Medicine, 381(19), 1809–1819. https://doi.org/10.1056/NEJMoa1908639
  • Mitchell, R. M., Jones, A. M., Stocking, K., Foden, P., & Barry, P. J. (2021). Longitudinal effects of ivacaftor and medicine possession ratio in people with the Gly551Asp mutation: A 5-year study. Thorax, 76(9), 874–879. https://doi.org/10.1136/thoraxjnl-2020-215556
  • Modi, A. C., Lim, C. S., Yu, N., Geller, D., Wagner, M. H., & Quittner, A. L. (2006). A multi-method assessment of treatment adherence for children with cystic fibrosis. Journal of Cystic Fibrosis, 5(3), 177–185. https://doi.org/10.1016/j.jcf.2006.03.002
  • Nasr, S. Z., Chou, W., Villa, K. F., Chang, E., & Broder, M. S. (2013). Adherence to dornase alfa treatment among commercially insured patients with cystic fibrosis. Journal of Medical Economics, 16(6), 801–808. https://doi.org/10.3111/13696998.2013.787427
  • Nazareth, D., & Walshaw, M. (2013). Coming of age in cystic fibrosis – transition from paediatric to adult care. Clinical Medicine (London, England), 13(5), 482–486. https://doi.org/10.7861/clinmedicine.13-5-482
  • NEJM Catalyst. (2017, January 1). What is patient-centred care? NEJM Catalyst. https://catalyst.nejm.org/doi/full/10.1056/CAT.17.0559
  • National Institute for Health and Care Excellence (NICE). (2009, January 28). Medicines adherence: Involving patients in decisions about prescribed medicines and supporting adherence. NICE. https://www.nice.org.uk/guidance/cg76
  • National Institute for Health and Care Excellence (NICE). (2021). Patient experience in adult NHS services: Improving the experience of care for people using adult NHS services. https://www.nice.org.uk/guidance/cg138/chapter/1-guidance#tailoring-healthcare-services-for-each-patient
  • Nickel, B., Barratt, A., Copp, T., Moynihan, R., & McCaffery, K. (2017). Words do matter: a systematic review on how different terminology for the same condition influences management preferences. BMJ Open, 7(7), e014129. https://doi.org/10.1136/bmjopen-2016-014129
  • Nieuwlaat, R., Wilczynski, N., Navarro, T., Hobson, N., Jeffery, R., Keepanasseril, A., Agoritsas, T., Mistry, N., Iorio, A., Jack, S., Sivaramalingam, B., Iserman, E., Mustafa, R. A., Jedraszewski, D., Cotoi, C., & Haynes, R. B. (2014). Interventions for enhancing medication adherence. The Cochrane Database of Systematic Reviews, 2014(11), CD000011. https://doi.org/10.1002/14651858.CD000011.pub4
  • Osterberg, L., & Blaschke, T. (2005). Adherence to medication. The New England Journal of Medicine, 353(5), 487–497. https://doi.org/10.1056/nejmra050100
  • Potthoff, S., Kwasnicka, D., Avery, L., Finch, T., Gardner, B., Hankonen, N., Johnston, D., Johnston, M., Kok, G., Lally, P., Maniatopoulos, G., Marques, M. M., McCleary, N., Presseau, J., Rapley, T., Sanders, T., Ten Hoor, G., Vale, L., Verplanken, B., & Grimshaw, J. M. (2022). Changing healthcare professionals’ non-reflective processes to improve the quality of care. Social Science & Medicine (1982), 298, 114840. https://doi.org/10.1016/j.socscimed.2022.114840
  • Quittner, A. L., Zhang, J., Marynchenko, M., Chopra, P. A., Signorovitch, J., Yushkina, Y., & Riekert, K. A. (2014). Pulmonary medication adherence and health-care use in cystic fibrosis. Chest, 146(1), 142–151. https://doi.org/10.1378/chest.13-1926
  • Riekert, K. A., Eakin, M. N., Bilderback, A., Ridge, A. K., & Marshall, B. C. (2015). Opportunities for cystic fibrosis care teams to support treatment adherence. Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society, 14(1), 142–148. https://doi.org/10.1016/j.jcf.2014.10.003
  • Robertson, K. (2005). Active listening: More than just paying attention. Australian Family Physician, 34(12), 1053–1055.
  • Sandler, R. D., Hoo, Z. H., & Wildman, M. J. (2023). P209 Personalised data-Linkage Understanding Treatment Optimisation (PLUTO) in the CFHealthHub Learning Health System: Understanding how much is enough for normal life expectancy in the post-modulator era. Journal of Cystic Fibrosis, 22(S2), S128–S129. https://doi.org/10.1016/S1569-1993(23)00582-9
  • Sawicki, G. S., Seller, D. E., & Robinson, W. M. (2009). High treatment burden in adults with cystic fibrosis: Challenges to disease self-management. Journal of Cystic Fibrosis : official Journal of the European Cystic Fibrosis Society, 8(2), 91–96. https://doi.org/10.1016/j.jcf.2008.09.007
  • Sawicki, G. S., Heller, K. S., Demars, N., & Robinson, W. M. (2015). Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives. Pediatric Pulmonology, 50(2), 127–136. https://doi.org/10.1002/ppul.23017
  • Sawyer, S. M., & Aroni, R. A. (2003). Sticky issue of adherence. Journal of Paediatrics and Child Health, 39(1), 2–5. https://doi.org/10.1046/j.1440-1754.2003.00081.x
  • Siracusa, C. M., Ryan, J., Burns, L., Wang, Y., Zhang, N., Clancy, J. P., & Drotar, D. (2015). Electronic monitoring reveals highly variable adherence patterns in patients prescribed ivacaftor. Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society, 14(5), 621–626. https://doi.org/10.1016/j.jcf.2015.05.009
  • Thomas, C. (2012, December 13). Why don’t patients take their meds as prescribed? Heart Sisters. https://myheartsisters.org/2012/12/13/why-dont-patients-take-their-meds-as-prescribed/
  • Tilson, H. H. (2004). Adherence or compliance? Changes in terminology. The Annals of Pharmacotherapy, 38(1), 161–162. https://doi.org/10.1345/aph.1D207
  • UK CF Registry. (2022). UK cystic fibrosis registry: 2021 Annual data report. CF Trust. https://www.cysticfibrosis.org.uk/sites/default/files/2022-10/CFT_2021-Annual-Data-Report-WEB.pdf
  • Wildman, M. J., O’Cathain, A., Maguire, C., Arden, M. A., Hutchings, M., Bradley, J., Walters, S. J., Whelan, P., Ainsworth, J., Buchan, I., Mandefield, L., Sutton, L., Tappenden, P., Elliott, R. A., Hoo, Z. H., Drabble, S. J., & Beever, D. (2022). Self-management intervention to reduce pulmonary exacerbations by supporting treatment adherence in adults with cystic fibrosis: a randomised controlled trial. Thorax, 77(5), 461–469. https://doi.org/10.1136/thoraxjnl-2021-217594
  • Wildman, M. J., & Hoo, Z. H. (2014). Moving cystic fibrosis care from rescue to prevention by embedding adherence measurement in routine care. Paediatric Respiratory Reviews, 15 Suppl 1(S1), 16–18. https://doi.org/10.1016/j.prrv.2014.04.007
  • World Health Organisation (WHO). (2003). Adherence to long-term therapies: evidence for action. WHO. https://www.who.int/chp/knowledge/publications/adherence_full_report.pdf
  • World Health Organisation (WHO). (2015). WHO global strategy on people-centred and integrated health services: Interim report. WHO. https://apps.who.int/iris/handle/10665/155002

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.