https://doi.org/10.4081/qrmh.2021.9647

The ticking time-bomb. Health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; A qualitative study

Vol. 5 No. 2 (2021)
Submitted: 28 January 2021
Accepted: 30 May 2021
Published: 5 October 2021
Health literacy, risk, narrative interviews, reflexive grounded theory
Abstract Views: 2512
PDF: 375
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

Mariya Lorke
mariya.lorke@uni-koeln.de
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne, Germany.
Laura Harzheim
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne, Germany.
Kerstin Rhiem
Center for Hereditary Breast and Ovarian Cancer, University Hospital Cologne, Cologne, Germany.
Christiane Woopen
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Research Unit Ethics, Institute for the History of Medicine and Medical Ethics, Faculty of Medicine, University of Cologne and University Hospital of Cologne, Cologne, Germany.
Saskia Jünger
Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), University of Cologne and University Hospital of Cologne, Cologne; Department of Community Health, University of Applied Health Sciences Bochum, Bochum, Germany.

Personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. The current study aims at understanding health literacy (HL) among persons at risk of developing familial breast-ovarian cancer (FBOC) from a bottom-up perspective—incorporating their viewpoints into the research process. Its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. The collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. The analysis of this interplay provides an empirical basis for approaching HL in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical HL.

Dimensions

Altmetric

PlumX Metrics

Downloads

Download data is not yet available.

Citations

Crossref
Scopus
Google Scholar
Europe PMC
Rhiem K, Bücker-Nott H-J, Hellmich M, et al. Benchmarking of a checklist for the identification of familial risk for breast and ovarian cancers in a prospective cohort. Breast J 2019;25:455–60. DOI: https://doi.org/10.1111/tbj.13257
Hauke J, Horvath J, Groß E, et al. Gene panel testing of 5589 BRCA1/2-negative index patients with breast cancer in a routine diagnostic setting: results of the German Consortium for Hereditary Breast and Ovarian Cancer. Cancer Med 2018;7:1349–58. DOI: https://doi.org/10.1002/cam4.1376
Jenkins R. Social identity. 2nd ed. London: Routledge, 2014. DOI: https://doi.org/10.4324/9781315887104
Appleton S, Fry A, Rees G, Rush R, Cull A. Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psycho-Oncology 2000;9:511–21. DOI: https://doi.org/10.1002/1099-1611(200011/12)9:6<511::AID-PON469>3.0.CO;2-E
Caiata-Zufferey M. Genetically at-risk status and individual agency. A qualitative study on asymptomatic women living with genetic risk of breast/ovarian cancer. Social science & medicine 2015;132:141–8. DOI: https://doi.org/10.1016/j.socscimed.2015.03.037
Bluman LG, Rimer BK, Regan Sterba K, et al. Attitudes, knowledge, risk perceptions and decision-making among women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2 and their spouses. Psycho-Oncology 2003;12:410–27. DOI: https://doi.org/10.1002/pon.653
Kenen R, Arden-Jones A, Eeles R. Healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives. Eur J Cancer Care (Engl) 2004;13:169–79. DOI: https://doi.org/10.1111/j.1365-2354.2004.00460.x
Slovic P, Finucane ML, Peters E, MacGregor DG. Risk as analysis and risk as feelings: some thoughts about affect, reason, risk, and rationality. Risk Anal 2004;24:311–22. DOI: https://doi.org/10.1111/j.0272-4332.2004.00433.x
Boholm Å. The cultural nature of risk: can there be an anthropology of uncertainty? Ethnos 2003;68:159–78. DOI: https://doi.org/10.1080/0014184032000097722
Boholm Å, Corvellec H. A relational theory of risk. J Risk Res 2011;14:175–90. DOI: https://doi.org/10.1080/13669877.2010.515313
Klitzman R, Chung W. The process of deciding about prophylactic surgery for breast and ovarian cancer: patient questions, uncertainties, and communication. Am J Med Genet 2010;152A:52–66. DOI: https://doi.org/10.1002/ajmg.a.33068
Etchegary H, Miller F, deLaat S, Wilson B, Carroll J, Cappelli M. Decision-making about inherited cancer risk: exploring dimensions of genetic responsibility. J Genet Couns 2009;18:252–64. DOI: https://doi.org/10.1007/s10897-009-9218-z
Chinn D. Critical health literacy: a review and critical analysis. Soc Sci Med 2011;73:60–7. DOI: https://doi.org/10.1016/j.socscimed.2011.04.004
Nutbeam D. Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. Health Promot Int 2000;15:259–67. DOI: https://doi.org/10.1093/heapro/15.3.259
Liu C, Wang D, Liu C, et al. What is the meaning of health literacy? A systematic review and qualitative synthesis. Fam Med Community Health 2020;8:e000351. DOI: https://doi.org/10.1136/fmch-2020-000351
Sørensen K, van den Broucke S, Fullam J, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health 2012;12:80. DOI: https://doi.org/10.1186/1471-2458-12-80
Altin SV, Finke I, Kautz-Freimuth S, Stock S. The evolution of health literacy assessment tools: a systematic review. BMC Public Health 2014;14:1207. DOI: https://doi.org/10.1186/1471-2458-14-1207
Haun JN, Valerio MA, McCormack LA, Sørensen K, Paasche-Orlow MK. Health literacy measurement: an inventory and descriptive summary of 51 instruments. J Health Commun 2014;19:302–33. DOI: https://doi.org/10.1080/10810730.2014.936571
McKenna VB, Sixsmith J, Barry MM. A qualitative study of the development of health literacy capacities of participants attending a community-based cardiovascular health programme. IJERPH 2018;15. DOI: https://doi.org/10.3390/ijerph15061157
Samerski S. Health literacy as a social practice: Social and empirical dimensions of knowledge on health and healthcare. Social Sci Med 2019;226:1–8. DOI: https://doi.org/10.1016/j.socscimed.2019.02.024
Jordan JE, Buchbinder R, Osborne RH. Conceptualising health literacy from the patient perspective. Patient Educ Couns 2010;79:36–42. DOI: https://doi.org/10.1016/j.pec.2009.10.001
Rutherford EJ, Kelly J, Lehane EA, et al. Health literacy and the perception of risk in a breast cancer family history clinic. Surgeon 2018;16:82–8. DOI: https://doi.org/10.1016/j.surge.2016.06.003
Ektir B, Yilmaz M. Breast cancer-related knowledge levels and health literacy in working women. Int J Caring Sci 2017;10:1658–68.
Nohl A-M. Interview und Dokumentarische Methode. Wiesbaden: Springer, 2017. DOI: https://doi.org/10.1007/978-3-658-16080-7
Breuer F, Muckel P, Dieris B, eds. Reflexive grounded theory, Eine Einführung für die Forschungspraxis. 4th ed. Wiesbaden: Springer, 2019. DOI: https://doi.org/10.1007/978-3-658-22219-2
Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 2018;52:1893–907. DOI: https://doi.org/10.1007/s11135-017-0574-8
Schutz A, Luckmann T. Structures of the life world. Lodon: Heinemann, 1974.
Gunn CM, Bokhour B, Parker VA, et al. Exploring explanatory models of risk in breast cancer risk counseling discussions: NSABP/NRG Oncology Decision-Making Project 1. Cancer Nurs 2019;42:3–11. DOI: https://doi.org/10.1097/NCC.0000000000000517
Harzheim L, Lorke M, Woopen C, Jünger S. Health literacy as communicative action—A qualitative study among persons at risk in the context of predictive and preventive medicine. IJERPH 2020;17:1718. DOI: https://doi.org/10.3390/ijerph17051718
Habermas J. Theorie des kommunikativen Handelns. 1st ed. Suhrkamp, 1981.
Sanders T, Campbell R, Donovan J, Sharp D. Narrative accounts of hereditary risk: knowledge about family history, lay theories of disease, and "internal" and "external" causation. Qual Health Res 2007;17:510–20. DOI: https://doi.org/10.1177/1049732306297882
Hallowell N. Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information. J Med Ethics 2003;29:74–9. DOI: https://doi.org/10.1136/jme.29.2.74
Maddock C, Camporesi S, Lewis I, Ahmad K, Sullivan R. Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project. Eur J Cancer 2012;48:1055–9. DOI: https://doi.org/10.1016/j.ejca.2011.08.018
Farmanova E, Bonneville L, Bouchard L. Organizational health literacy: review of theories, frameworks, guides, and implementation issues. Inquiry 2018;55. DOI: https://doi.org/10.1177/0046958018757848
Holmberg C, Bandos H, Fagerlin A, et al. NRG Oncology/National Surgical Adjuvant Breast and Bowel Project Decision-Making Project-1 Results: decision making in breast cancer risk reduction. Cancer Prev Res (Phila) 2017;10:625–34. DOI: https://doi.org/10.1158/1940-6207.CAPR-17-0076
Dixon-Woods M, Williams SJ, Jackson CJ, Akkad A, Kenyon S, Habiba M. Why do women consent to surgery, even when they do not want to? An interactionist and Bourdieusian analysis. Soc Sci Med 2006;62:2742–53. DOI: https://doi.org/10.1016/j.socscimed.2005.11.006
Sarangi S, Bennert K, Howell L, Clarke A. 'Relatively speaking': relativisation of genetic risk in counselling for predictive testing. Health Risk Society 2003;5:155–70. DOI: https://doi.org/10.1080/1369857031000123939
Bloom DL, Chapman BM, Wheeler SB, et al. Reframing the conversation about contralateral prophylactic mastectomy: Preparing women for postsurgical realities. Psycho-Oncology 2019;28:394–400. DOI: https://doi.org/10.1002/pon.4955
Holmberg C, Waters EA, Whitehouse K, Daly M, McCaskill-Stevens W. My lived Experiences are more important than your probabilities: the role of individualized risk estimates for decision making about participation in the Study of Tamoxifen and Raloxifene (STAR). Med Decis Making 2015;35:1010–22. DOI: https://doi.org/10.1177/0272989X15594382

How to Cite

Lorke, Mariya, Laura Harzheim, Kerstin Rhiem, Christiane Woopen, and Saskia Jünger. 2021. “The Ticking Time-Bomb. Health Literacy in the Context of Genetic Risk Prediction in Familial Breast-Ovarian Cancer; A Qualitative Study”. Qualitative Research in Medicine and Healthcare 5 (2). https://doi.org/10.4081/qrmh.2021.9647.

PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.