Understanding the Role of Facebook Support Groups in Information Exchange for Cancer Patients in Romania
Keywords:Facebook support groups, cancer patients, Romania, information exchange, information quality, online communities
The rise of online support groups, especially on social media platforms such as Facebook, has opened new opportunities for cancer patients to access emotional support, share information, and engage in peer-to-peer interactions. This research focused on understanding the role of Facebook support groups in providing information and support to cancer patients in Romania. Using a qualitative research approach and multimodal discourse analysis, the study examined the information exchange within four public and private Romanian cancer support groups on Facebook. The results demonstrated that these groups serve as a platform for emotional support, sharing personal experiences, and exchanging information on medical advice, treatment alternatives, and coping mechanisms.
Although misinformation presents a challenge, Facebook support groups have become crucial in offering emotional support, information, and a sense of community for cancer patients in Romania. This research emphasizes the significance of Facebook support groups for cancer patients in Romania and underlines the need to tackle misinformation while promoting evidence-based practices within these online communities.
Asociation of Cancer Online Resources. Retrieved February 26, 2023, from https://www.acor.org/
Bender, J. L., Hueniken, K., Eng, L., Brown, M. C., Kassirian, S., Geist, I., Balaratnam, K., Liang, M., Paulo, C. B., Geist, A., Rao, P., Magony, A., Smith, E. C., Xu, W., Liu, G., & Gupta, A. A. (2021). Internet and social media use in cancer patients: association with distress and perceived benefits and limitations. Supportive Care in Cancer, 29(9), 5273–5281. https://doi.org/10.1007/s00520-021-06077-0
Çobaner, A., A. & Bek, M., G. (2022). Social Support Through Digital Media? Breast Cancer Groups at Facebook.
In I. Management Association (Ed.), Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media (pp. 418-435). IGI Global. https://doi.org/10.4018/978-1-6684-2414-8.ch023
European Cancer Patient Coalition (ECPC). Members. Retrieved April 2, 2023, from https://ecpc.org/about-us/members/
European Commission. (2021, February 3). A cancer plan for Europe. Commission.europa.eu.
Harkin, L. J., Beaver, K., Dey, P., & Choong, K. A. (2020). Secret groups and open forums: Defining online support communities from the perspective of people affected by cancer. DIGITAL HEALTH, 6, 205520761989899. https://doi.org/10.1177/2055207619898993
Kadravello, A., Tan, S.-B., Ho, G.-F., Kaur, R., & Yip, C.-H. (2021). Exploring Unmet Needs from an Online Metastatic Breast Cancer Support Group: A Qualitative Study. Medicina, 57(7), 693. https://doi.org/10.3390/medicina57070693
Kress, G., R. & Van Leeuwen, T. (2001). Multimodal discourse: the modes and media of contemporary communication. Arnold; Oxford University Press.
Li, M., Shi, J., & Chen, Y. (2022). Identifying Influences in Patient Decision-making Processes in Online Health Communities: Data Science Approach. Journal of Medical Internet Research, 24(8), e30634. https://doi.org/10.2196/30634
Lin, T.-C., Fang, D., Hsueh, S.-Y., & Lai, M.-C. (2019). Drivers of participation in Facebook long-term care groups: Applying the use and gratification theory, social identification theory, and the modulating role of group diversity. Health Informatics Journal, 26(1), 146045821983961. https://doi.org/10.1177/1460458219839618
Liu, S., Xiao, W., Fang, C., Zhang, X., & Lin, J. (2020). Social support, belongingness, and value co-creation behaviors in online health communities. Telematics and Informatics, 50, 101398. https://doi.org/10.1016/j.tele.2020.101398
Ma, D., Zuo, M., & Liu, L. (2021). The Information Needs of Chinese Family members of Cancer Patients in the Online Health Community: What and Why? Information Processing & Management, 58(3), 102517. https://doi.org/10.1016/j.ipm.2021.102517
Madge, O.-L., Marincas¸, A. M., Daha, C., & Simion, L. (2023). Health information seeking behaviour and decision making by patients undergoing breast cancer surgery: A qualitative study. Health Information&Libraries Journal, 1–12. https://doi.org/10.1111/hir.12480
Mikal, J. P., Beckstrand, M. J., Parks, E., Oyenuga, M., Odebunmi, T., Okedele, O., Uchino, B., & Horvath, K. (2020). Online social support among breast cancer patients: longitudinal changes to Facebook use following breast cancer diagnosis and transition off therapy. Journal of Cancer Survivorship, 14. https://doi.org/10.1007/s11764-019-00847-w
Ministry of Health, The National Institute of Public Health. (2021). The National Center for Statistics in Public Health. General Mortality, 3, 5, 10, 12. Retrieved from https://insp.gov.ro/centrul-national-de-statistica-in-sanatate-publica-cnssp/date-statistice-pagina-de-descarcare/
National Oncology Program. (2002). National Health Insurance House. Retrieved April 2, 2023, from http://www.casan.ro/page/programul-national-de-oncologie.html
Newman, L. A., & Jackson, K. E. (2009). The Sisters Network: A National African American Breast Cancer Survivor Advocacy Organization. Journal of Oncology Practice, 5(6), 313–314. https://doi.org/10.1200/jop.091037
Odeniyi, F., Patel, D., Freeman, E., Pasquinelli, M., Jain, S. (2022, March 21). Social Media, Technology Access, and Oncology: Where Do Patients Seek and Share Health Information? JMIR Preprints. https://preprints.jmir.org/preprint/36441
OCDE/European Observatory on Health Systems and Policies. (2021). Romania: 2021 health country profile. State of health in the EU (pp. 3, 9, 13, 17, 20, 21). OECD Publishing European Observatory on Health Systems and Policies. Retrieved from https://health.ec.europa.eu/system/files/2022-01/2021_chp_romania_romanian.pdf
Parker Oliver, D., Washington, K. T., Benson, J., White, P., Cruz Oliver, D., Smith, J. B., Mazur, J., Lakew, A., Lewis, A., & Demiris, G. (2022). Facebook Online Support Groups for Hospice Family Caregivers of Advanced Cancer Patients: Protocol, Facilitation Skills and Promising Outcomes. Journal of Social Work in End-of-Life & Palliative Care, 18(2), 146–159. https://doi.org/10.1080/15524256.2022.2046236
Patient Power. (n.d.). Patientpower.info. Retrieved February 26, 2023, from https://www.patientpower.info/bio/gilles-frydman
Petrič, G., Cugmas, M., Petrič, R., & Atanasova, S. (2023). The quality of informational social support in online health communities: A content analysis of cancer-related discussions. Digital Health, 2023;9. https://doi.org/10.1177/20552076231155681
Petukhova, T. A., Wilson, B. N., Gadjiko, M., Lee, E. H., Wang, J., Rossi, A. M., & Nehal, K. S. (2020). Utilization of Facebook for support and education by patients with skin cancer. Dermatology Online Journal, 26(3). https://doi.org/10.5070/D3263047973
PCF-Curing Together | PCF | Prostate Cancer Foundation | Prostate Cancer Symptoms. (2017). Prostate Cancer Foundation. https://www.pcf.org/
Rueger, J., Dolfsma, W., & Aalbers, R. (2021). Perception of peer advice in online health communities: Access to lay expertise. Social Science & Medicine, 277(113117). https://doi.org/10.1016/j.socscimed.2020.113117
Shaw, B., R., McTavish, F., Hawkins, R., Gustafson, D., H., Pingree. S. (2000). Experiences of Women with Breast Cancer: Exchanging Social Support over the CHESS Computer Network. Journal of Health Communication, 5(2), 135–159. https://doi.org/10.1080/108107300406866
Stage, C., Hvidtfeldt, K., & Klastrup, L. (2020). Vital Media: The Affective and Temporal Dynamics of Young Cancer Patients’ Social Media Practices. Social Media + Society, 6(2), 205630512092476. https://doi.org/10.1177/2056305120924760
van Eenbergen, M. C., van Engelen, H., Ezendam, N. P. M., van de Poll-Franse, L. V., Tates, K., & Krahmer, E. J. (2019). Paying attention to relatives of cancer patients: What can we learn from their online writings? Patient Education and Counseling, 102(3), 404–410. https://doi.org/10.1016/j.pec.2018.11.004
Weinberg, N., Schmale, J., Uken, J., & Wessel, K. (1996). Online Help: Cancer Patients Participate in a Computer-Mediated Support Group. Health & Social Work, 21(1), 24–29. https://doi.org/10.1093/hsw/21.1.24
Winzelberg, A. J., Classen, C., Alpers, G. W., Roberts, H., Koopman, C., Adams, R. E., Ernst, H., Dev, P., & Taylor, C. B. (2003). Evaluation of an internet support group for women with primary breast cancer. Cancer, 97(5), 1164–1173. https://doi.org/10.1002/cncr.11174
World Health Organization (2020, December 15) Latest global cancer data: Cancer burden rises to 19.3 million new cases and 10.0 million cancer deaths in 2020 – IARC. https://www.iarc.who.int/news-events/latest-global-cancer-data-cancer-burden-rises-to-19-3-million-new-cases-and-10-0-million-cancer-deaths-in-2020/
World Health Organization. (2021). Romania. https://gco.iarc.fr/today/data/factsheets/populations/642-romania-fact-sheets.pdf
World Health Organization. (2022, February 3). Cancer. https://www.who.int/news-room/fact-sheets/detail/cancer
Zhao, Y., Da, J., & Yan, J. (2021). Detecting health misinformation in online health communities: Incorporating
behavioral features into machine learning based approaches. Information Processing & Management,
(1), 102390. https://doi.org/10.1016/j.ipm.2020.102390
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