Understanding cancer survivors’ information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study
DOI:
https://doi.org/10.5195/jmla.2018.200Keywords:
CAM, complementary and alternative medicine, information seeking, cancer, mixed-methodsAbstract
Objective: The research examined complementary and alternative medicine (CAM) information-seeking behaviors and preferences from short- to long-term cancer survival, including goals, motivations, and information sources.
Methods: A mixed-methods approach was used with cancer survivors from the “Assessment of Patients’ Experience with Cancer Care” 2004 cohort. Data collection included a mail survey and phone interviews using the critical incident technique (CIT).
Results: Seventy survivors from the 2004 study responded to the survey, and eight participated in the CIT interviews. Quantitative results showed that CAM usage did not change significantly between 2004 and 2015. The following themes emerged from the CIT: families’ and friends’ provision of the initial introduction to a CAM, use of CAM to manage the emotional and psychological impact of cancer, utilization of trained CAM practitioners, and online resources as a prominent source for CAM information. The majority of participants expressed an interest in an online information-sharing portal for CAM.
Conclusion: Patients continue to use CAM well into long-term cancer survivorship. Finding trustworthy sources for information on CAM presents many challenges such as reliability of source, conflicting information on efficacy, and unknown interactions with conventional medications. Study participants expressed interest in an online portal to meet these needs through patient testimonials and linkage of claims to the scientific literature. Such a portal could also aid medical librarians and clinicians in locating and evaluating CAM information on behalf of patients.References
Chao MT, Wade C, Kronenberg F. Disclosure of complementary and alternative medicine to conventional medical providers: variation by race/ethnicity and type of CAM. J Natl Med Assoc. 2008 Nov;100(11):1341–9. Epub 2008/11/26.
Wilkinson JM, Stevens MJ. Use of complementary and alternative medical therapies (CAM) by patients attending a regional comprehensive cancer care centre. J Complement Integr Med. 2014 Jun;11(2):139–45.
Huebner J, Muenstedt K, Prott FJ, Stoll C, Micke O, Buentzel J, Muecke R, Senf B. Online survey of patients with breast cancer on complementary and alternative medicine. Breast Care (Basel). 2014 Feb;9(1):60–3.
Paul M, Davey B, Senf B, Stoll C, Münstedt K, Mücke R, Micke O, Prott FJ, Buentzel J, Hübner J. Patients with advanced cancer and their usage of complementary and alternative medicine. J Cancer Res Clin Oncol. 2013 Sep;139(9):1515–22.
Eng J, Ramsum D, Verhoef M, Guns E, Davison J, Gallagher R. A population-based survey of complementary and alternative medicine use in men recently diagnosed with prostate cancer. Integr Cancer Ther. 2003 Sep;2(3):212–6.
Bar-Sela G, Danos S, Visel B, Mashiach T, Mitnik I. The effect of complementary and alternative medicine on quality of life, depression, anxiety, and fatigue levels among cancer patients during active oncology treatment: phase II study. Support Care Cancer. 2015 Jul;23(7):1979–85.
Sasagawa M, Martzen MR, Kelleher WJ, Wenner CA. Positive correlation between the use of complementary and alternative medicine and internal health locus of control. Explore (NY). 2008 Jan–Feb;4(1):38–41.
Verhoef MJ, Trojan L, Armitage GD, Carlson L, Hilsden RJ. Complementary therapies for cancer patients: assessing information use and needs. Chronic Dis Can. 2009;29(2).
Ebel MD, Rudolph I, Keinki C, Hoppe A, Muecke R, Micke O, Muenstedt K, Huebner J. Perception of cancer patients of their disease, self-efficacy and locus of control and usage of complementary and alternative medicine. J Cancer Res Clin Oncol. 2015 Aug;141(8):1449–55.
Weeks L, Balneaves LG, Paterson C, Verhoef M. Decision-making about complementary and alternative medicine by cancer patients: integrative literature review. Open Med. 2014 Apr 15;8(2):e54–66.
Huebner J, Senf B, Micke O, Muecke R, Stoll C, Prott FJ, Muenstedt K, Dennert G, working group Prevention and Integrative Oncology (PRIO) of the German Cancer Society. Online information on complementary and alternative medicine for cancer patients: evidence-based recommendations. Onkologie. 2013;36(5):273–8.
Verhoef MJ, Mulkins A, Carlson LE, Hilsden RJ, Kania A. Assessing the role of evidence in patients’ evaluation of complementary therapies: a quality study. Integr Cancer Ther. 2007 Dec;6(4):345–53.
Evans M, Shaw A, Thompson EA, Falk S, Turton P, Thompson T, Sharp D. Decisions to use complementary and alternative medicine (CAM) by male cancer patients: information-seeking roles and types of evidence used. BMC Complement Altern Med. 2007 Aug 4;7:25.
Matoff-Stepp S, Applebaum B, Pooler J, Kavanagh E. Women as health care decision-makers: implications for health care coverage in the United States. J Health Care Poor Underserved. 2014 Nov;25(4):1507–13.
Balneaves LG, Weeks L, Seely D. Patient decision-making about complementary and alternative medicine in cancer management: context and process. Curr Oncol. 2008 Aug;15(supp 2):s94–s100.
Crumley ET. Exploring the roles of librarians and health care professionals involved with complementary and alternative medicine. J Med Libr Assoc. 2006 Jan;94(1):81–9.
Gillaspy M. Factors affecting the provision of consumer health information in public libraries: the last five years. Libr Trends. 2005 Winter;53(3):480–95.
Linnan LA, Wildemuth BM, Gollop C, Hull P, Silbajoris C, Monnig R. Public librarians as a resource for promoting health: results from the Health for Everyone in Libraries Project (HELP) librarian survey. Health Promot Pract. 2004 Apr;5(2):182–90.
Urquhart C, Light A, Thomas R, Barker A, Yeoman A, Cooper J, Armstrong C, Fenton R, Lonsdale R, Spink S. Critical incident technique and explication interviewing in studies of information behavior. Libr Inf Sci Res. 2003;25(1):63–8.
Pihl Lesnovska K, Hollman Frisman G, Hjortswang H, Börjeson S. Critical situations in daily life as experienced by patients with inflammatory bowel disease. Gastroenterol Nurs. 2016 May–Jun 6;39(3):195–203.
Ruggiero T. Uses and gratifications theory in the 21st century. Mass Commun Soc. 2000;3(1):3–37.
Janz NB, Becker MH. The health belief model: a decade later. Health Educ Q. 1984;11(1):1–47.
Whiting A, Williams D. Why people use social media: a uses and gratifications approach. Qualitative Mark Res. 2013;16(4):362–9.
Arora NK, Reeve BB, Hays RD, Clauser SB, Oakley-Girvan I. Assessment of quality of cancer-related follow-up care from the cancer survivor’s perspective. J Clin Oncol. 2011 Apr 1;29(10):1280–9.
Pluye P, Hong QN. Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews. Annu Rev Public Health. 2014;35:29–45.
Brennen BS. Qualitative research methods for media studies. 1st ed. New York, NY; London, UK: Routledge; 2012. p. 248.
Hope L, Mullis R, Gabbert F. Who? what? when? using a timeline technique to facilitate recall of a complex event. J Applied Res Mem Cognit. 2013 Mar;2(1):20–4.
Tippens KM, Chao MT, Connelly E, Locke A. Patient perspectives on care received at community acupuncture clinics: a qualitative thematic analysis. BMC Complement Altern Med. 2013 Oct 29;13:293.
Boyatzis R. Transforming qualitative information. Thousand Oaks, CA; London, UK; New Delhi, India: SAGE Publications; 1998.
Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks, CA: Sage Publications; 2002. p. xxiv, 598, 65.
Ali A, Vitulano L, Lee R, Weiss TR, Colson ER. Experiences of patients identifying with chronic Lyme disease in the healthcare system: a qualitative study. BMC Fam Pract. 2014 May 1;15:79.
Kent E MS, Oakley-Girvan I, Arora NK. Symptom reporting and symptom management among cancer survivors with colorectal cancer, bladder cancer, and leukemia. Presented at: Biennial Conference on Cancer Survivorship; Arlington, VA; June 14–16, 2012.
Campo RA, Leniek KL, Gaylord-Scott N, Faurot KR, Smith S, Asher G, Porterfield D, Gaylord SA. Weathering the seasons of cancer survivorship: mind-body therapy use and reported reasons and outcomes by stages of cancer survivorship. Support Care Cancer. 2016 Sep;24(9):3783–91.