Confused Learner. Online Health Information Seeking by Breast Cancer Patients

Emilia Mazurek; Renata Martinec; Brigita Vilč

doi:10.18778/2450-4491.21.07

Auteurs

Emilia Mazurek University of Lodz https://orcid.org/0000-0002-2132-8756
Renata Martinec University of Zagreb https://orcid.org/0000-0003-0820-7850
Brigita Vilč University of Zagreb https://orcid.org/0000-0001-7957-2447

DOI :

https://doi.org/10.18778/2450-4491.21.07

Mots-clés :

health, online information-seeking, internet, adult learning, confusion

Résumé

The aim of this study was to reconstruct online health information seeking behaviors during oncological treatment. The qualitative research, in the interpretive paradigm, was conducted in Poland and Croatia. Purposive sampling was used. The participants were breast cancer patients after the oncological diagnosis obtained no more than 5 years before the study. A total of 24 participants aged 34 to 76 were enrolled in the study. In-depth interviews were conducted. Reflexive thematic analysis was used. Five strategies of involvement or non-involvement in online information-seeking required by health crisis used by research participants were identified: overly active/obsessive online information-seeking, active online information-seeking, withdrawing from online information-seeking, avoidance, non-involvement. The strategies are also ways of coping with illness and learning during a health crisis. They are associated with many burdens. That is why some cancer patients become confused learners.

Bibliographies de l'auteur

Emilia Mazurek, University of Lodz

Emilia Mazurek, Ph.D., is an assistant professor in the Department of Educational Studies, at the Faculty of Educational Sciences, University of Lodz. Her research interests are focused on psychosocial and educational consequences of cancer, formal and informal caregiving for cancer patients, illness narratives and family narratives. She is the author of the book Educational Biographies of Women Affected by Breast Cancer (Wroclaw 2013) and the other numerous scientific publications. In 2020, she was awarded the Medal of the National Education Commission for special services for education and upbringing by the Minister of National Education in Poland. She is also the winner of the competition “Short-term mobilities of researchers to UNIC partner universities” (edition 2023) as part of the Excellence Initiative - Research University program at the University of Lodz. As a result of this competition, she completed a research internship at the Faculty of Education and Rehabilitation Sciences, University of Zagreb, Croatia.

Renata Martinec, University of Zagreb

Renata Martinec, Ph.D., is a full professor at the University of Zagreb, Faculty of Education and Rehabilitation Sciences, Head of the Department of Motor Disorders, Chronic Diseases and Art Therapies. Her specific scientific and professional interests are focused on motor disorders, chronic diseases, psychosocial oncology, complementary therapies and expressive art-therapies. She has participated in the realisation of numerous scientific and professional projects, both domestic and international. She has also participated in various training courses and is a certified dance movement therapist (according to the standards of the European Dance Movement Therapy Association – EADMT). She is one of the leaders of the advanced training courses “Expressive Arts-therapies in Education and Rehabilitation – Module I and II”. She is a member of the Psychotherapy Unit at the Teaching and Clinical Centre. She is the initiator of the establishment and head of the Laboratory of Arts and Science at the Faculty of Education and Rehabilitation Sciences, since 2024.

Brigita Vilč, University of Zagreb

Brigita Vilč is a teaching assistant at the University of Zagreb, Faculty of Education and Rehabilitation Sciences, in the Department of Motor Disorders, Chronic Diseases and Art Therapies. She holds a Master’s degree in Educational Rehabilitation (2017), for which she received the Dean’s Award as the top graduate student, as well as a Master’s degree in piano instrumental studies (2015). In 2018, she began her PhD in Neuroscience at the University of Zagreb School of Medicine, focusing her research on the impact of music listening on the emotional and psychological well-being of oncology patients. She is also a Senior Artistic Associate at the University of Zagreb Academy of Music, where she teaches the course “Students with Difficulties in the Music Education Process” and serves as a collaborative pianist. In 2014, she performed as a soloist in Maurice Ravel’s Piano Concerto for the Left Hand with the Zagreb Philharmonic Orchestra at the Vatroslav Lisinski Concert Hall, earning the prestigious Rector’s Award. Also, she is engaged in music therapy education. She has been leading music workshops for children with Down syndrome for years. She also coordinates the “Music in(to) the Clinics” concert series at the Center for Arts and Medicine, University Hospital for Tumors, Sestre Milosrdnice University Hospital Center Zagreb, Croatia, bringing live classical music performances to oncology patients and medical staff. This initiative was honored with a special Dean’s Award in 2025.

Références

Adekunle T. A., Knowles J. M., Hantzmon S. V., DasGupta M. N., Pollak K. I., Gaither S. E. (2023) A Qualitative Analysis of Trust and Distrust within Patient-Clinician Interactions, “PEC Innovation”, no. 3: 100187, https://doi.org/10.1016/j.pecinn.2023.100187.
View in Google Scholar

Arora N. K., Johnson P., Gustafson D. H., McTavish F., Hawkins R. P., Pingree S. (2002) Barriers to Information Access, Perceived Health Competence, and Psychosocial Health Outcomes: Test of a Mediation Model in a Breast Cancer Sample, “Patient Education and Counseling”, no. 7(1), pp. 37–46, https://doi.org/10.1016/S0738-3991(01)00170-7.
View in Google Scholar

Bontempo A. C. (2023) Patient Attitudes Toward Clinicians’ Communication of Diagnostic Uncertainty and its Impact on Patient Trust, “Qualitative Research in Health”, no. 3: 100214, https://doi.org/10.1016/j.ssmqr.2022.100214.
View in Google Scholar

Braun V., Clarke V. (2022) Thematic Analysis. A Practical Guide, London, Sage Publications, https://doi.org/10.53841/bpsqmip.2022.1.33.46.
View in Google Scholar

Chandra S., Mohammadnezhad M., Ward P. (2018) Trust and Communication in a Doctor-Patient Relationship: A Literature Review, “Journal of Healthcare Communications”, no. 3(3:36), https://doi.org/10.4172/2472-1654.100146.
View in Google Scholar

Conrad P., Bandini J., Vasquez A. (2016) Illness and the Internet: From Private to Public Experience, “Health”, no. 20(1), pp. 22–32, https://doi.org/10.1177/1363459315611941.
View in Google Scholar

Conrad P., Stults C. (2010) The Internet and the Experience of Illness in: Handbook of Medical Sociology, 6th ed., C. E. Bird, P. Conrad, A. M. Fremont, S. Timmermans (eds.), Nashville, TN, Vanderbilt University Press, pp. 179–191, https://doi.org/10.2307/j.ctv16h2n9s.14.
View in Google Scholar

Czerwińska M. (2015) Specyfika zachowań e-pacjentów w Internecie, ”Roczniki Kolegium Analiz Ekonomicznych”, no. 38, pp. 343–351.
View in Google Scholar

Diaz J. A., Sciamanna C. N., Evangelou E., Stamp M. J., Ferguson T. (2005) Brief Report: What Types of Internet Guidance do Patients Want from their Physicians?, “Journal of General Internal Medicine”, no. 20, pp. 683–685, https://doi.org/10.1111/j.1525-1497.2005.0115.x.
View in Google Scholar

Emanuel E. J., Emanuel L. L. (1992) Four Models of the Physician-Patient Relationship, “JAMA – Journal of the American Medical Association”, no. 267(16), pp. 1–9, https://doi.org/10.1001/jama.1992.03480160079038.
View in Google Scholar

Ghahramani F., Wang J. (2020) Impact of Smartphones on Quality of Life: A Health Information Behavior Perspective, “Information Systems Frontiers”, no. 22, pp. 1275–1290, https://doi.org/10.1007/s10796-019-09931-z.
View in Google Scholar

Groen W. G., Kuijpers W., Oldenburg H. S., Wouters M. W., Aaronson N. K., van Harten W. H. (2015) Empowerment of Cancer Survivors Through Information Technology: An Integrative Review, “Journal of Medical Internet Research”, no. 17(11): e270, https://doi.org/10.2196/jmir.4818.
View in Google Scholar

Jia X., Pang Y., Liu L. S. (2021) Online Health Information Seeking Behavior: A Systematic Review, “Healthcare”, no. 9(12): 1740, https://doi.org/10.3390/healthcare9121740.
View in Google Scholar

Kargulowa A. (2017) Pacjent, klient, homo consultans – perspektywa andragogiczna, “Teraźniejszość – Człowiek – Edukacja”, no. 20/3(79), pp. 7–20.
View in Google Scholar

Krot K. (2019) Zaufanie w relacji lekarz-pacjent. Implikacje dla zarządzania zakładem opieki zdrowotnej, Warszawa, Wydawnictwo CeDeWu.
View in Google Scholar

Łuków P. (2005) Granice zgody. Autonomia zasad i dobro pacjenta, Warszawa, Wydawnictwo Naukowe Scholar.
View in Google Scholar

Malewski M. (2023) Społeczeństwo wiedzy – nieobecna kategoria andragogiki, “Edukacja Dorosłych”, no. 87(2), pp. 11–22, https://doi.org/10.12775/ED.2022.011.
View in Google Scholar

Mayer D. K., Terrin N. C., Kreps G. L., Menon U., McCance K., Parsons S. K., Mooney K. H. (2007) Cancer Survivors Information Seeking Behaviors: A Comparison of Survivors who Do and Do Not Seek Information about Cancer, “Patient Education and Counseling”, no. 65(3), pp. 342–350, https://doi.org/10.1016/j.pec.2006.08.015.
View in Google Scholar

Mazurek E. (2018) Wstydliwy brak? Negocjowanie znaczeń raka piersi, “Problemy Edukacji, Rehabilitacji i Socjalizacji Osób Niepełnosprawnych”, no. 4, pp. 77–90 https://doi.org/10.31261/PERiSON.2018.27.05.
View in Google Scholar

Mazurek E., Martinec R., Vilč B. (2025a) It’s Normal. Untrustworthy Memorable Messages in Formal Caregiving for Breast Cancer Patients, “Psycho-Oncology”, no. 34(10): e70279, https://doi.org/10.1002/pon.70279.
View in Google Scholar

Mazurek E., Martinec R., Vilč B., Mayer L., Kirac I., Herman I. (2025b) We will Get Through This Together. Trustworthy Memorable Messages in Formal Caregiving for Breast Cancer Patients, “Patient Education and Counseling”, no. 139: 109257, https://doi.org/10.1016/j.pec.2025.109257.
View in Google Scholar

Melhem S. J., Nabhani-Gebara S., Kayyali R. (2023) Digital Trends, Digital Literacy, and E-Health Engagement Predictors of Breast and Colorectal Cancer Survivors: A Population-Based Cross-Sectional Survey, “International Journal of Environmental Research and Public Health”, no. 20(2): 1472, https://doi.org/10.3390/ijerph20021472.
View in Google Scholar

Melhem S. J., Nabhani-Gebara S., Kayyali R. (2024) Evaluating Online Health Information Utilisation and its Psychosocial Implications Among Breast Cancer Survivors: Qualitative Explorations, “Health Promotion Perspectives”, no. 14(1), pp. 61–69, https://doi.org/10.34172/hpp.42682.
View in Google Scholar

Muijsenberg A. J., Houben-Wilke S., Zeng Y., Spruit M. A., Janssen D. J. (2023) Methods to Assess Adults’ Learning Styles and Factors Affecting Learning in Health Education: A Scoping Review, “Patient Education and Counseling”, no. 107: 107588, https://doi.org/10.1016/j.pec.2022.107588.
View in Google Scholar

Shutzberg M. (2021) The Doctor as Parent, Partner, Provider… or Comrade? Distribution of Power in Past and Present Models of the Doctor-Patient Relationship, “Health Care Analysis. Journal of Health Philosophy and Policy”, no. 29(3), pp. 231–248, https://doi.org/10.1007/s10728-021-00432-2.
View in Google Scholar

Soboń M. (2021) Relacja lekarz–pacjent w warunkach dostępu do internetowej informacji o zdrowiu, Szczecin, Wydawnictwo Naukowe Uniwersytetu Szczecińskiego, https://doi.org/10.18276/978-83-7972-748-3.
View in Google Scholar

Szpunar M. (2014) Doktor Google. Internet jako źródło informacji o zdrowiu in: Komunikowanie w ochronie zdrowia – interpersonalne, organizacyjne i medialne, Goban-Klas T. (red.), Warszawa, ABC Wolters Kluwer Business.
View in Google Scholar

Tagliacozzo D. M., Ima K. (1970) Knowledge of Illness as a Predictor of Patient Behavior, “Journal of Chronic Diseases”, no. 22, pp. 765–775, https://doi.org/10.1016/0021-9681(70)90052-4.
View in Google Scholar

Williams S., Weinmen J., Dale J. (1998) Doctor-Patient Communication and Patient Satisfaction: A Review, “Family Practice”, no. 15(5), pp. 480–492, https://doi.org/10.1093/fampra/15.5.480.
View in Google Scholar

Woynarowska B. (2017) Modele zdrowia in: Edukacja zdrowotna. Podstawy teoretyczne, metodyka, praktyka, B. Woynarowska (red.), Warszawa, Wydawnictwo Naukowe PWN, pp. 21–26.
View in Google Scholar

Wroński K., Cywiński J., Bocian R., Dziki A. (2008) Paternalizm w medycynie / Paternalism in Medicine, “Kardiochirurgia i Torakochirurgia Polska”, no. 5(3), pp. 349–352.
View in Google Scholar

Wroński K., Bocian R., Depta A., Cywiński J., Dzik A. (2009) Opinie pacjentów na temat modelu paternalistycznego w relacji lekarz–pacjent. Prawne aspekty autonomii pacjenta w opiece zdrowotnej, “Nowotwory. Journal of Oncology”, no. 59(4), pp. 266–273.
View in Google Scholar

Zembala A. (2015) Modele komunikacyjne w relacjach lekarz–pacjent, “Zeszyty Naukowe Towarzystwa Doktorantów UJ Nauki Ścisłe”, no. 2(11), pp. 35–50.
View in Google Scholar

Eurostat (2025) Individuals Using the Internet for Seeking Health-Related Information, https://ec.europa.eu/eurostat/databrowser/view/tin00101/default/table?lang=en (accessed: 27.02.2025).
View in Google Scholar

Global Cancer Observatory (2022) International Agency for Research on Cancer, Cancer Today, Croatia, https://gco.iarc.who.int/media/globocan/factsheets/populations/191-croatia-fact-sheet.pdf (accesed: 6.06.2025).
View in Google Scholar