Volume 8 (2021): Issue 1

Seeing the bigger picture: Qualitative research in the Zoom® age

Open Access | | Creative Commons Attribution NonCommercial NoDerivatives
Simon Fletcher ORCID iD

Abstract

Abstract

Participants in clinical trials for new haemophilia treatments are routinely asked to complete quality of life (QoL) questionnaires using validated and disease-specific instruments. Yet too often in clinical research we know very little about the life stories of individuals, making it difficult to know how they have been affected by a new therapy and what exactly has changed for the better – or for the worse. In my own research, I wanted to understand the differences that new treatments are really making to people's everyday lives. While traditional QoL instruments can be helpful, using a qualitative approach that involves speaking directly with people with haemophilia (PwH) and their family members has enabled me find out what has really been going on their lives, including impacts on the wider family. The Covid pandemic and the need to maintain social distancing changed the way in which my research has been carried out, but in fact provided an opportunity to see an even bigger picture. I believe that using videoconferencing platforms to conduct interviews and focus groups has both allowed me to see more of the world in which the participants live and has enabled participants to be more relaxed and open in their conversations, resulting in a potentially richer dataset. While this approach to qualitative QoL research should not replace interviews and focus groups, the use of videoconferencing should be considered as another methodology researchers can and should use to enable them to glean the richest data possible. Qualitative interviews offer an important complementary addition to the validated QoL measures used in clinical trials, enabling us to hear more about where improvements have occurred, where further improvements can be made, and the real-life impact of a new treatment for PwH and their families.

Article

View Full Article

References

  • 1. World Health Organization. WHOQOL: Measuring Quality of Life. Available at https://www.who.int/toolkits/whoqol (accessed December 2021).
  • 2. Osborne TR, Ramsenthaler C, Siegert RJ, et al. What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools. Eur J Haematol 2012; 89: 437–457 doi:https://doi.org/10.1111/ejh.12012.
  • 3. Koot HM. The study of quality of life: concepts and methods. In: Koot HM., Wallender JL eds. Quality of Life in Child and Adolescent Illness. New York, Taylor and Francois Inc; 2001:3–21.
  • 4. Parens E, Asch A. Disability rights critique of prenatal genetic testing: Reflections and recommendations. Mental Retardation and Developmental Disabilities Research Reviews. 2003;9(1):40–47 doi.org/10.1002/mrdd.10056.
  • 5. Macduff C. Respondent-generated quality of life measures: useful tools for nursing or more fool's gold? J Adv Nurs 2000; 32(2): 375–382 doi:https://doi.org/10.1046/j.1365-2648.2000.01486.x.
  • 6. Fletcher S, Jenner K, Holland M, Khair K. The lived experience of a novel disruptive therapy in a group of men and boys with haemophilia A with inhibitors: Emi & Me. Health Expect. 2021;1–12. doi:https://doi.org/10.1111/hex.13404.
  • 7. Fletcher S, Jenner K, Holland M, Chaplin S, Khair K. An exploration of why men with severe haemophilia might not want gene therapy: The exigency study. Haemophilia 2021;27:760–768. doi: https://doi.org/10.1111/hae.14378.
  • 8. Khair K, Steadman L, Chaplin S, Holland M, Jenner K, Fletcher S. Parental perspectives on gene therapy for children with haemophilia: the Exigency study. Haemophilia 2020; 27(1): 120–128. doi: https://doi.org/10.1111/hae.14188.
  • 9. Fletcher S, Jenner K, Pembroke L, Holland M, Khair K. The experience of people with haemophilia undergoing gene therapy in a clinical trial setting: Regaining Control, an Exigency Study (manuscript submitted for publication, 2021).
  • 10. Charon R. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA 2001; 286(15): 1897–902. doi:https://doi.org/10.1001/jama.286.15.1897.
  • 11. Hojat M, Louis DZ, Markham FW, Wender R, Rabinowitz C, Gonnella JS. Physicians' empathy and clinical outcomes for diabetic patients. Acad Med 2011; 86(3): 359–64. doi:https://doi.org/10.1097/ACM.0b013e3182086fe1.
  • 12. Attar HS, Chandramani S. Impact of physician empathy on migraine disability and migraineur compliance. Ann Indian Acad Neurol 2012; 15(Suppl 1): S89–94. doi:https://doi.org/10.4103/0972-2327.100025
  • 13. Carey MA, Smith MW. Capturing the group effect in focus groups: a special concern in analysis. Qualitative Health Research 1994; 4(1): 123–127. doi.https://doi.org/10.1177/104973239400400108
  • 14. Kaplowitz MD, Hoehn JP. Do focus groups and individual interviews reveal the same information for natural resource valuation? Ecological Economics 2001; 36(2): 237–247 doi:https://doi.org/10.1016/S0921-8009(00)00226-3.
  • 15. MacDougall C, Baum F. The devil's advocate: a strategy to avoid groupthink and stimulate discussion in focus groups. Qualitative Health Research 1997; 7 (4): 532–541. doihttps://doi.org/10.1177/104973239700700407.
  • 16. Khair K, Phillott A, Loran C, Pollard D, Forrester C, Alavian S, Hook S. HaemophiliaLIVE: an ethnographic study on the impact of haemophilia on daily life. J Haem Pract 2014;1(3): 14–20. doi: https://doi.org/10.17225/jhp.00030.
  • 17. Archibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using Zoom videoconferencing for qualitative data collection: perceptions and experiences of researchers and participants. International Journal of Qualitative Methods 2019; 18: 1–8. doi:https://doi.org/10.1177/1609406919874596.
  • 18. Gray LM, Wong-Wylie G, Rempel GR, Cook K. Expanding qualitative research interviewing strategies: Zoom video communications. The Qualitative Report 2020; 25(5): 1292–1301. doi: https://doi.org/10.46743/2160-3715/2020.4212.

PDF Download

Download PDF

Open in full-page viewer

Authors