0
No votes yet

Seeking and Managing Hope: Patients' Experiences Using the Internet for Cancer Care

Suzanne S. Dickerson
Marcia Boehmke
Carolann Ogle
Jean K. Brown
ONF 2006, 33(1), E8-E17 DOI: 10.1188/06.ONF.E8-E17

Purpose/Objectives: To describe the experiences of patients with cancer using the Internet for information and support to manage the self-care aspects of illness and treatment, including symptom management.

Research Approach: Heideggerian hermeneutics branch of phenomenology.

Setting: The interviews took place in outpatient settings in the northeastern United States, including clinics, patients' homes, and the researchers' office.

Participants: 20 patients self-identified as users of the Internet for cancer care.

Methodologic Approach: Data were collected by informal interviews that provided the narrative stories for hermeneutic analysis.

Main Research Variables: Internet use for cancer care and patient-provider relationship.

Findings: Five related themes and one constitutive pattern described patients' experiences. The themes were retrieving and filtering Internet information according to personal situation by Internet-savvy people in patients' support networks, seeking hope from the newest treatment options while coping with fear in manageable "bytes," self-care for personal illness situations with meaningful information regarding symptom management, empowering patients as partners when Internet information served as a second opinion in decision making and validating treatment decisions, and Internet as providing peer support. The constitutive pattern was Internet use as assisting patients in discovering ways to live with cancer as a chronic illness instead of a death sentence.

Conclusions: Patients with cancer are incorporating Internet use into their cancer care. They perceive changing provider-patient relationships when they participate in treatment decisions.

Interpretation: Computer-savvy patients and their personal support networks will avail themselves of Internet information, creating the need for new interaction patterns and relationships with providers.

References 

Berland, G.K., Elliot, M.N., Morales, L.S., Algazy, J.I., Kravitz, R.L., Broder, M.S., et al. (2001). Health information on the Internet: Accessibility, quality, and readability in English and Spanish. <i>JAMA, 285</i>, 2612-2621.

Chelf, J.H., Agre, P., Axelrod, A., Cheney, L., Cole, D.D., Conrad, K., et al. (2001). Cancer-related patient education: An overview of the last decade of evaluation and research. <i>Oncology Nursing Forum, 28</i>, 1139-1147.

Dickerson, S.S. (2005). Technology-patient interactions: Internet use for gaining a healthy context for living with an implantable cardioverter defibrillator ICD. <i>Heart and Lung, 34</i>, 157-168.

Dickerson, S.S., Boehmke, M., Ogle, C., & Brown, J.K. (2005). Out of necessity: Oncology nurses experiences integrating the Internet into practice. <i>Oncology Nursing Forum, 32</i>, 355-362.

Dickerson, S.S., & Brennan, P.F. (2002). The Internet as a catalyst for shifting power in provider-patient relationships. <i>Nursing Outlook, 50</i>, 195-203.

Diekelmann, N., Allen, D., & Tanner, C. (1989). <i>The NLN criteria for appraisal of baccalaureate programs: A critical hermeneutic analysis</i>. New York: National League for Nursing.

Diekelmann, N., & Ironside, P. (1998). Hermeneutics. In J. Fitzpatrick (Ed.), <i>Encyclopedia of nursing research</i> (pp. 243-245). New York: Springer.

Eysenbach, G. (2003). The impact of the Internet on cancer outcomes. <i>CA: A Cancer Journal for Clinicians, 53</i>, 356-371.

Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. <i>BMJ, 328</i>, 1166.

Eysenbach, G., Powell, J., Kuss, O., & Sa, E.R. (2002). Empirical studies assessing the quality of health information for consumers on the World Wide Web: A systematic review. <i>JAMA, 287</i>, 2691-2700.

Fernsler, J., & Manchester, L. (1997). Evaluation of a computer based cancer support network. <i>Cancer Practice, 5</i>, 46-51.

Fogel, J., Albert, S., Schnabel, F., Ditkoff, B.A., & Neugut, A. (2002). Use of the Internet by women with breast cancer. <i>Journal of Medical Internet Research, 4(2), E9. Retrieved November 30, 2005</i>, from http://www.jmir.org/2002/2/e9

Henson, R.H. (1997). Analysis of the concept of mutuality. <i>Image—The Journal of Nursing Scholarship, 29</i>, 77-81.

Jadad, A., Sigouin, C., Cocking, L., Booker, L., Whelan, T., & Browman, G. (2001). Internet use among physicians, nurses, and their patients. <i>JAMA, 286</i>, 1451-1452.

Jadad, A.R., & Gagliardi, A. (1998). Rating health information on the Internet: Navigating to knowledge or Babel? <i>JAMA, 279</i>, 611-614.

Klemm, P., Bunnell, D., Cullen, M., Soneji, R., Gobbons, P., & Holecek, A. (2003). Online cancer support groups: A review of the research literature. <i>Computers, Informatics, Nursing, 21</i>(3), 136-142.

Klemm, P., & Hardie, T. (2002). Depression in Internet and face-to-face cancer support groups: A pilot study [Online exclusive]. <i>Oncology Nursing Forum, 29, E45-E51. Retrieved November 30, 2005</i>, from http://www.ons.org/publications/journals/ONF/Volume29/Issue4/290445.asp

Klemm, P., Reppert, K., & Visich, L. (1998). A non-traditional cancer support group: The Internet. <i>Computers in Nursing, 16</i>, 31-36.

Lieberman, M., Golant, M., Giese-Davis, J., Winzlenberg, A., Benjamin, H., Humphreys, K., et al. (2003). Electronic support groups for breast carcinoma: A clinical trial of effectiveness. <i>Cancer, 97</i>, 920-925.

Pew Internet and American Life Project. (2002). <i>Vital decisions: How Internet users decide what information to trust when they or their loved ones are sick</i>. Retrieved April 21, 2005, from <a target="_blank" href='http://www.pewinternet.org/pdfs/PIP_Vital_Decisions_May2002.pdf'>http://...

Pew Internet and American Life Project. (2003). <i>Internet health resources: Health searches and email have become more commonplace, but there is room for improvement in searches and overall Internet access</i>. Retrieved November 17, 2005, from <a target="_blank" href='http://www.pewinternet.org/pdfs/PIP_Health_Report_July_2003.pdf'>http://...

Revere, D., & Dunbar, P.J. (2001). Review of computer-generated outpatient health behavior interventions: Clinical encounters "in absentia." <i>Journal of American Medical Informatics Association, 8</i>, 62-79.

Robinson, T.N., Patrick, K., Eng, T.R., & Gustafson, D. (1998). An evidence-based approach to interactive health communication: A challenge to medicine in the information age. <i>JAMA, 280</i>, 1264-1269.

Rozmovits, L., & Ziebland, S. (2004). What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. <i>Patient Education and Counseling, 53</i>(1), 57-64.

Satterlund, M., McCaul, K., & Sandgren, A. (2003). Information gathering over time by breast cancer patients. <i>Journal of Medical Internet Research, 5(3), E15. Retrieved November 30, 2005</i>, from http://www.jmir.org/2003/3/e15

Schultz, P.N., Stava, C., Beck, M.L., & Vassilopoulou-Sellin, R. (2003). Internet message board use by patients with cancer and their families. <i>Clinical Journal of Oncology Nursing, 7</i>, 663-667.

Sharf, B.F. (1997). Communicating breast cancer on-line: Support and empowerment on the Internet. <i>Women and Health, 26</i>(1), 65-84.

Vandenberg, T., Meads, G., Engel, J., Owens, B., Beker, J., Stitt, L., et al. (1997). A randomized pilot study of the effect of computer-based information and support for women with newly diagnosed breast cancer [Abstract 293]. Retrieved January 25, 2005, from <a target="_blank" href='http://www.asco.org/ac/1, 1003,_12-002640-00_18-0030-00_19-0011118,00.asp'>http://www.asco.org/ac/1, 1003,_12-002640-00_18-0030-00_19-0011118,00.asp</a>

Weinberg, N., Schmale, J., Uken, J., & Wessel, K. (1996). Online help: Cancer patients participate in a computer-mediated support group. <i>Health and Social Work, 21</i>(1), 24-29.

Winzelberg, A.J., Classen, C., Alpers, G.W., Roberts, H., Koopman, C., Adams, R.E., et al. (2003). Evaluation of an Internet support group for women with primary breast cancer. <i>Cancer, 97</i>, 1164-1173.

Ziebland, S. (2004). The importance of being expert: The quest for cancer information on the Internet. <i>Social Science and Medicine, 59</i>, 1783-1793.