Article

The Internet as a Source of Health Information: Experiences of Cancer Survivors and Caregivers With Healthcare Providers

Maria C. Dolce

Internet, Patient education
ONF 2011, 38(3), 353-359. DOI: 10.1188/11.ONF.353-359

Purpose/Objectives: To describe the experiences of cancer survivors and caregivers with healthcare providers in the context of the Internet as a source of health information.

Research Approach: Qualitative description.

Setting: Online cancer communities hosted by the Association of Cancer Online Resources.

Participants: Purposive sample of 488 cancer survivors, with varying cancer types and survivorship stages, and caregivers.

Methodologic Approach: Secondary data analysis using Krippendorff's thematic clustering technique of qualitative content analysis.

Main Research Variables: Survivorship, healthcare relationships, and the Internet.

Findings: Disenchantment with healthcare relationships was associated with failed expectations related to evidence-based practice, clinical expertise, informational support, and therapeutic interpersonal communication. Survivors and caregivers exercised power in healthcare relationships through collaboration, direct confrontation, becoming expert, and endorsement to influence and control care decisions.

Conclusions: Disenchantment propelled cancer survivors and caregivers to search the Internet for health information and resources. Conversely, Internet information-seeking precipitated the experience of disenchantment. Through online health information and resources, concealed failures in healthcare relationships were revealed and cancer survivors and caregivers were empowered to influence and control care decisions.

Interpretation: The findings highlight failures in cancer survivorship care and underscore the importance of novel interdisciplinary programs and models of care that support evidence-informed decision making, self-management, and improved quality of life. Healthcare professionals need to receive education on survivors' use of the Internet as a source of health information and its impact on healthcare relationships. Future research should include studies examining the relationship between disenchantment and survivorship outcomes.

Jump to a section

    References

    American Association of Colleges of Nursing. (2008). The essentials of baccalaureate education for professional nursing practice. Retrieved from http://www.aacn.nche.edu/Education/pdf/BaccEssentials08.pdf
    Anderson, J. G., Rainey, M. R., & Eysenbach, G. (2003). The impact of CyberHealthcare on the physician-patient relationship. Journal of Medical Systems, 27, 67-84. http://dx.doi.org/10.1023/A:1021061229743
    Bass, S. B., Ruzek, S. B., Gordon, T. F., Fleisher, L., McKeown-Conn, N., & Moore, D. (2006). Relationship of Internet health information use with patient behavior and self-efficacy. Journal of Health Communication, 11, 219-236.
    Broom, A. (2005a). Medical specialists' accounts of the impact of the Internet on the doctor/patient relationship. Health, 9, 319-338.
    Broom, A. (2005b). Virtually he@lthy: The impact of Internet use on disease experience and the doctor-patient relationship. Qualitative Health Research, 15, 325-345. http://dx.doi.org/10.1177/1049732304272916
    Brotherton, J. M. L., Clarke, S. J., & Quine, S. (2002). Use of the Internet by oncology patients: Its effect on the doctor-patient relationship. Medical Journal of Australia, 177, 395.
    Chen, X., & Siu, L. L. (2001). Impact of the media and the Internet on oncology. Journal of Clinical Oncology, 19, 4291-4297.
    Dickerson, S. S., Boehmke, M., Ogle, C., & Brown, J. K. (2006). Seeking and managing hope: Patients' experiences using the Internet for cancer care [Online exclusive]. Oncology Nursing Forum, 33, E8-E17. http://dx.doi.org/10.1188/06.ONF.E8-E17
    Fox, S. (2007). E-patients with a disability or chronic disease. Retrieved from http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx
    Guba, E. G., & Lincoln, Y. S. (2005). Paradigmatic controversies, contradictions, and emerging confluences. In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (3rd ed., pp. 191-215). Thousand Oaks, CA: Sage.
    Helft, P. R., Hlubocky, F., & Daugherty, C. K. (2003). American oncologists' views of Internet use by cancer patients: A mail survey of American Society of Clinical Oncology members. Journal of Clinical Oncology, 21, 942-947. http://dx.doi.org/10.1200/JCO.2003.08.007
    Hesse, B. W., Arora, N. K., Beckjord, E. B., & Finney Rutten, L. J. (2008). Information source for cancer survivors. Cancer, 112(11, Suppl.), 2529-2540. http://dx.doi.org/10.1002/cncr.23445
    Hesse, B. W., Nelson, D. E., Kreps, G. L., Croyle, R. T., Arora, N. K., Rimer, B. K., … Viswanath, K. (2005). Trust and sources of health information: The impact of the Internet and its implications for health care providers: Findings from the first Health Information National Trends Survey. Archives of Internal Medicine, 165, 2618-2624.
    Huang, G. J., & Penson, D. F. (2008). Internet health resources and the cancer patient. Cancer Investigation, 26, 202-207.
    Husband, L. L. (2001). Shaping the trajectory of patients with venous ulceration in primary care. Health Expectations, 4, 189-198.
    Krippendorff, K. (1980). Clustering. In P. R. Monge & J. N. Cappella (Eds.), Multivariate techniques in human communication research (pp. 259-308). New York: Academic Press.
    Krippendorff, K. (2004). Content analysis: An introduction to its methodology (2nd ed.). Thousand Oaks, CA: Sage.
    Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Thousand Oaks, CA: Sage.
    Newnham, G. M., Burns, W. I., Snyder, R. D., Dowling, A. J., Ranieri, N. F., Gray, E. L., & McLachlan, S. A. (2005). Attitudes of oncology health professionals to information from the Internet and other media. Medical Journal of Australia, 183, 197-200.
    Newnham, G. M., Burns, W. I., Snyder, R. D., Dowling, A. J., Ranieri, N. F., Gray, E. L., & McLachlan, S. A. (2006). Information from the Internet: Attitudes of Australian oncology patients. Internal Medicine Journal, 36, 718-723. http://dx.doi.org/10.1111/j.1445-5994.2006.01212.x
    Norum, J., Grev, A., Moen, M. A., Balteskard, L., & Holthe, K. (2003). Information and communication technology (ICT) in oncology. Patients' and relatives' experiences and suggestions. Supportive Care in Cancer, 11, 286-293.
    Pereira, J. L., Koski, S., Hanson, J., Bruera, E. D., & Mackey, J. R. (2000). Internet usage among women with breast cancer: An exploratory study. Clinical Breast Cancer, 1, 148-153. http://dx.doi.org/10.3816/CBC.2000.n.013
    Pitts, V. (2004). Illness and Internet empowerment: Writing and reading breast cancer in cyberspace. Health, 8, 33-59.
    Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health, 23, 334-340.
    Sharf, B. F. (1997). Communicating breast cancer on-line: Support and empowerment on the Internet. Women and Health, 26, 65-84.
    Shaw, B. R., Han, J. Y., Hawkins, R. P., Stewart, J., McTavish, F., & Gustafson, D. H. (2007). Doctor-patient relationship as motivation and outcome: Examining uses of an Interactive Cancer Communication System. International Journal of Medical Informatics, 76, 274-282.
    Sloan, R. S. (1999). Guarded alliance relationships between hemodialysis patients and their health care providers. American Nephrology Nurses' Association Journal, 26, 503-505.
    Thorne, S. E., & Robinson, C. A. (1988). Health care relationships: The chronic illness perspective. Research in Nursing and Health, 11, 293-300.
    Thorne, S. E., & Robinson, C. A. (1989). Guarded alliance: Health care relationships in chronic illness. Image: Journal of Nursing Scholarship, 21, 153-157.
    van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18, 405-417.
    Ziebland, S. (2004). The importance of being expert: The quest for cancer information on the Internet. Social Science and Medicine, 59, 1783-1793.
    Ziebland, S., Chapple, A., Dumelow, C., Evans, J., Prinjha, S., & Rozmovits, L. (2004). How the Internet affects patients' experience of cancer: A qualitative study. BMJ, 328, 1-6.