Information seeking and avoidance throughout the cancer patient journey: two sides of the same coin? A synthesis of qualitative studies

奇纳 心理信息 信息搜寻 背景(考古学) 定性研究 心理学 信息寻求行为 梅德林 信息需求 社会心理学 计算机科学 万维网 社会学 情报检索 精神科 心理干预 政治学 古生物学 社会科学 生物 法学
作者
Evi Germeni,Peter J. Schulz
出处
期刊:Psycho-oncology [Wiley]
卷期号:23 (12): 1373-1381 被引量:45
标识
DOI:10.1002/pon.3575
摘要

Psycho-OncologyVolume 23, Issue 12 p. 1373-1381 Paper Information seeking and avoidance throughout the cancer patient journey: two sides of the same coin? A synthesis of qualitative studies Evi Germeni, Corresponding Author Evi Germeni Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, SwitzerlandCorrespondence to: Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, Switzerland. E-mail: [email protected]Search for more papers by this authorPeter J. Schulz, Peter J. Schulz Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, SwitzerlandSearch for more papers by this author Evi Germeni, Corresponding Author Evi Germeni Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, SwitzerlandCorrespondence to: Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, Switzerland. E-mail: [email protected]Search for more papers by this authorPeter J. Schulz, Peter J. Schulz Institute of Communication and Health, Faculty of Communication Sciences, University of Lugano, Lugano, SwitzerlandSearch for more papers by this author First published: 10 May 2014 https://doi.org/10.1002/pon.3575Citations: 27Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Abstract Objective Understanding what motivates patients to seek or avoid information beyond the medical consultation is essential for effective information provision that will be relevant to patients' needs and preferences. We conducted a synthesis of published qualitative research to provide insight into patients' motivations for cancer information seeking and avoidance. Methods We searched five electronic databases: Medline, CINAHL, PsycINFO, Communication and Mass Media Complete, and Sociological Abstracts. We complemented this process by reviewing reference lists of relevant articles and searching in Google Scholar. We independently assessed the quality of selected studies and used the technique of meta-ethnography to synthesize available findings. Results Eighteen articles that reported the information-seeking experiences of 650 patients diagnosed with more than 20 different types of cancer were included. Key concepts were experience of diagnosis, sense of control, trust in medical expertise, hope and fear, and need to resume normality. The synthesis revealed the fluid boundaries existing between information seeking and avoidance throughout the cancer journey and pointed toward the exploration of factors that could influence patients' motivations to engage in information seeking. Patient characteristics, disease characteristics, characteristics of incoming information, and the context of cancer care were found to facilitate or hinder individuals' willingness and potential to assume the role of ‘informed patient’. Conclusions This meta-ethnography suggests that information seeking and avoidance should not be necessarily considered as two distinct behaviors pertaining to different groups of patients; rather, a number of personal and contextual characteristics should be taken into account when evaluating patient desire for information. Copyright © 2014 John Wiley & Sons, Ltd. References 1 Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997; 44: 681– 692. 2 Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. Am J Prev Med 1999; 17: 285– 294. 3 Politi MC, Studts JL, Hayslip JW. Shared decision making in oncology practice: what do oncologists need to know? Oncologist 2012; 17: 91– 100. 4 Jefford M, Tattersall MH. Informing and involving cancer patients in their own care. Lancet Oncol 2002; 3: 629– 637. 5 Nagler RH, Gray SW, Romantan A et al. Differences in information seeking among breast, prostate, and colorectal cancer patients: results from a population-based survey. Patient Educ Couns 2010; 81(Suppl): S54– S62. 6 Eheman CR, Berkowitz Z, Lee J et al. Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. J Health Commun 2009; 14: 487– 502. 7 Ramanadhan S, Viswanath K. Health and the information nonseeker: a profile. Health Commun 2006; 20: 131– 139. 8 Case DO, Andrews JE, Johnson JD, Allard SL. Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. J Med Libr Assoc 2005; 93: 353– 362. 9 Brashers D, Goldsmith, DJ, Hsieh, E. Information seeking and avoiding in health contexts. Hum Commun Res 2002; 28: 258– 271. 10 Britten N, Campbell R, Pope C, Donovan J, Morgan M, Pill R. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy 2002; 7: 209– 215. 11 Sandelowski M, Docherty S, Emden C. Focus on qualitative methods. Qualitative metasynthesis: issues and techniques. Res Nurs Health 1997; 20: 365– 371. 12 Lambert SD, Loiselle CG. Health information seeking behavior. Qual Health Res 2007; 17: 1006– 1019. 13 Tong A, Lowe A, Sainsbury P, Craig JC. Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 2008; 121: 349– 360. 14 Atkins S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol 2008; 8: 21. 15 Munro SA, Lewin SA, Smith HJ, Engel ME, Fretheim A, Volmink J. Patient adherence to tuberculosis treatment: a systematic review of qualitative research. PLoS Med 2007; 4: e238. 16 Noblit G, Hare, RD. Meta-Ethnography: Synthesizing Qualitative Studies. Sage Publications: London, 1988. 17 Pound P, Britten N, Morgan M et al. Resisting medicines: a synthesis of qualitative studies of medicine taking. Soc Sci Med 2005; 61: 133– 155. 18 Campbell R, Pound P, Pope C et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med 2003; 56: 671– 684. 19 Schutz A. Collected Papers, Vol. 1. The Hague: Nijhoff, 1962. 20 Leydon GM, Boulton M, Moynihan C et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ 2000; 320: 909– 913. 21 Friis LS, Elverdam B, Schmidt KG. The patient's perspective: a qualitative study of acute myeloid leukaemia patients' need for information and their information-seeking behaviour. Support Care Cancer 2003; 11: 162– 170. 22 Kirk P, Kirk I, Kristjanson LJ. What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 2004; 328: 1343. 23 Ziebland S, Chapple A, Dumelow C, Evans J, Prinjha S, Rozmovits L. How the internet affects patients' experience of cancer: a qualitative study. BMJ 2004; 328: 564. 24 Dickerson SS, Boehmke M, Ogle C, Brown JK. Seeking and managing hope: patients' experiences using the Internet for cancer care. Oncol Nurs Forum 2006; 33: E8– E17. 25 Loiselle CG, Lambert SD, Cooke A. The searching, processing, and sharing of breast cancer information by women diagnosed with the illness. Can J Nurs Res 2006; 38: 82– 104. 26 Evans M, Shaw A, Thompson EA et al. 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; 7: 25. 27 McCaughan E, McKenna H. Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients. J Clin Nurs 2007; 16: 2096– 2104. 28 McCaughan E, McKenna H. Information-seeking behaviour of men newly diagnosed with cancer: a qualitative study. J Clin Nurs 2007; 16: 2105– 2113. 29 Lambert SD, Loiselle CG, Macdonald ME. An in-depth exploration of information-seeking behavior among individuals with cancer: part 1: understanding differential patterns of active information seeking. Cancer Nurs 2009; 32: 11– 23; quiz 4–5. 30 Lambert SD, Loiselle CG, Macdonald ME. An in-depth exploration of information-seeking behavior among individuals with cancer: part 2: understanding patterns of information disinterest and avoidance. Cancer Nurs 2009; 32: 26– 36. 31 Nanton V, Docherty A, Meystre C, Dale J. Finding a pathway: information and uncertainty along the prostate cancer patient journey. Br J Health Psychol 2009; 14: 437– 458. 32 Tsuchiya M, Horn SA. An exploration of unmet information needs among breast cancer patients in Japan: a qualitative study. Eur J Cancer Care (Engl) 2009; 18: 149– 155. 33 Balka E KG, Holmes BJ, Stephen JE. Situating Internet use: information-seeking among young women with breast cancer. J Comput-Mediat Comm 2010; 15: 389– 411. 34 Nagler RH, Romantan A, Kelly BJ et al. How do cancer patients navigate the public information environment? Understanding patterns and motivations for movement among information sources. J Cancer Educ 2010; 25: 360– 370. 35 Dickerson SS, Reinhart A, Boemhke M, Akhu-Zaheya L. Cancer as a problem to be solved: Internet use and provider communication by men with cancer. Comput Inform Nurs 2011; 29: 388– 395. 36 McCaughan E, Parahoo K, Prue G. Comparing cancer experiences among people with colorectal cancer: a qualitative study. J Adv Nurs 2011; 67: 1365– 2648. 37 Radina ME, Ginter AC, Brandt J, Swaney J, Longo DR. Breast cancer patients' use of health information in decision making and coping. Cancer Nurs 2011; 34: E1– E12. 38 Green J, Britten N. Qualitative research and evidence based medicine. BMJ 1998; 316: 1230– 1232. 39 Wiart L, Burwash S. Qualitative research is evidence, too. Aust J Physiother 2007; 53: 215– 216. 40 Audrey S. Qualitative research in evidence-based medicine: improving decision-making and participation in randomized controlled trials of cancer treatments. Palliat Med 2011; 25: 758– 765. 41 Grace J. Qualitative research: using ‘soft’ evidence to solve hard clinical problems. AACN Adv Crit Care 2011; 22: 89– 92. 42 Adams E, McCann L, Armes J et al. The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography. Psycho-Oncology 2011; 20: 851– 861. 43 Smith LK, Pope C, Botha JL. Patients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet 2005; 366: 825– 831. 44 Ofran Y, Paltiel O, Pelleg D, Rowe JM, Yom-Tov E. Patterns of information-seeking for cancer on the internet: an analysis of real world data. PLoS One 2012; 7: e45921. 45 Smith-McLallen A, Fishbein M, Hornik RC. Psychosocial determinants of cancer-related information seeking among cancer patients. J Health Commun 2011; 16: 212– 225. 46 Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns 2005; 57: 250– 261. 47 Butow PN, Maclean M, Dunn SM, Tattersall MH, Boyer MJ. The dynamics of change: cancer patients' preferences for information, involvement and support. Ann Oncol 1997; 8: 857– 863. 48 Mistry A, Wilson S, Priestman T, Damery S, Haque M. How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey. JRSM Short Rep 2010; 1: 30. 49 Shaw RL, Booth A, Sutton AJ et al. Finding qualitative research: an evaluation of search strategies. BMC Med Res Methodol 2004; 4: 5. 50 Bunn F, Goodman C, Sworn K et al. Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Med 2012; 9: e1001331. Citing Literature Supporting Information Filename Description pon3575-sup-0001-supinfo.pdfPDF document, 78.2 KB Supporting info item Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article. Volume23, Issue12December 2014Pages 1373-1381 ReferencesRelatedInformation
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