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

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.

[1]  Qualitative research is evidence, too. , 2007, The Australian journal of physiotherapy.

[2]  J. Grace Qualitative research: using "soft" evidence to solve hard clinical problems. , 2011, AACN advanced critical care.

[3]  Amber M. Reinhart,et al.  Cancer as a Problem to Be Solved: Internet Use and Provider Communication by Men With Cancer , 2011, Computers, informatics, nursing : CIN.

[4]  R M Kaplan,et al.  Shared decision making in clinical medicine: past research and future directions. , 1999, American journal of preventive medicine.

[5]  Hugh McKenna,et al.  Never-ending making sense: towards a substantive theory of the information-seeking behaviour of newly diagnosed cancer patients. , 2007, Journal of clinical nursing.

[6]  S. Lewin,et al.  Patient Adherence to Tuberculosis Treatment: A Systematic Review of Qualitative Research , 2007, PLoS medicine.

[7]  Carmen G. Loiselle,et al.  An In-depth Exploration of Information-Seeking Behavior Among Individuals With Cancer: Part 1: Understanding Differential Patterns of Active Information Seeking , 2009, Cancer nursing.

[8]  Rebekah H Nagler,et al.  How Do Cancer Patients Navigate the Public Information Environment? Understanding Patterns and Motivations for Movement Among Information Sources , 2010, Journal of Cancer Education.

[9]  J. Dale,et al.  Finding a pathway: information and uncertainty along the prostate cancer patient journey. , 2009, British journal of health psychology.

[10]  K. Schmidt,et al.  The patient's perspective - A qualitative study of acute myeloid leukemia patients' need for information and their information seeking behaviour , 2003 .

[11]  J. Rowland,et al.  Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). , 2005, Patient education and counseling.

[12]  S. Ziebland,et al.  How the internet affects patients' experience of cancer: a qualitative study , 2004, BMJ : British Medical Journal.

[13]  E. McCaughan,et al.  Information-seeking behaviour of men newly diagnosed with cancer: a qualitative study. , 2007, Journal of clinical nursing.

[14]  S. Lambert,et al.  Health Information—Seeking Behavior , 2007, Qualitative health research.

[15]  S. Audrey Qualitative research in evidence-based medicine: Improving decision-making and participation in randomized controlled trials of cancer treatments , 2011, Palliative medicine.

[16]  M Sandelowski,et al.  Focus on qualitative methods. Qualitative metasynthesis: issues and techniques. , 1997, Research in nursing & health.

[17]  C. Charles,et al.  Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). , 1997, Social science & medicine.

[18]  A. Mistry,et al.  How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey , 2010, JRSM short reports.

[19]  A. Richardson,et al.  The experiences, needs and concerns of younger women with breast cancer: a meta‐ethnography , 2011, Psycho-oncology.

[20]  D. Goldsmith,et al.  Information Seeking and Avoiding in Health Contexts , 2002 .

[21]  S. Dickerson,et al.  Seeking and managing hope: patients' experiences using the Internet for cancer care. , 2006, Oncology nursing forum.

[22]  K. McPherson,et al.  Cancer patients' information needs and information seeking behaviour: in depth interview study , 2000, BMJ : British Medical Journal.

[23]  S. Horn,et al.  An exploration of unmet information needs among breast cancer patients in Japan: a qualitative study. , 2009, European journal of cancer care.

[24]  Mary C Politi,et al.  Shared decision making in oncology practice: what do oncologists need to know? , 2012, The oncologist.

[25]  D. Longo,et al.  Breast Cancer Patients' Use of Health Information in Decision Making and Coping , 2011, Cancer nursing.

[26]  Carmen G. Loiselle,et al.  An In-depth Exploration of Information-Seeking Behavior Among Individuals With Cancer: Part 2: Understanding Patterns of Information Disinterest and Avoidance , 2009, Cancer nursing.

[27]  Catherine Pope,et al.  Resisting medicines: a synthesis of qualitative studies of medicine taking. , 2005, Social science & medicine.

[28]  M. Jefford,et al.  Informing and involving cancer patients in their own care. , 2002, The Lancet. Oncology.

[29]  Tina Miller,et al.  Finding qualitative research: an evaluation of search strategies , 2004, BMC medical research methodology.

[30]  G. Noblit,et al.  Meta-Ethnography: Synthesizing Qualitative Studies , 1988 .

[31]  Suzanne L. Allard,et al.  Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance, and related concepts. , 2005, Journal of the Medical Library Association : JMLA.

[32]  Catherine Pope,et al.  Patients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis , 2005, The Lancet.

[33]  Zahava Berkowitz,et al.  Information-Seeking Styles Among Cancer Patients Before and After Treatment by Demographics and Use of Information Sources , 2009, Journal of health communication.

[34]  D. Pelleg,et al.  Patterns of Information-Seeking for Cancer on the Internet: An Analysis of Real World Data , 2012, PloS one.

[35]  K. Viswanath,et al.  Health and the Information Nonseeker: A Profile , 2006, Health communication.

[36]  L. Kristjanson,et al.  What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study , 2004, BMJ : British Medical Journal.

[37]  S. Lambert,et al.  The searching, processing, and sharing of breast cancer information by women diagnosed with the illness. , 2006, The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres.

[38]  S. Iliffe,et al.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies , 2012, PLoS medicine.

[39]  Jian-ping Liu,et al.  [Qualitative research and evidence-based medicine]. , 2008, Zhongguo Zhong xi yi jie he za zhi Zhongguo Zhongxiyi jiehe zazhi = Chinese journal of integrated traditional and Western medicine.

[40]  P. Butow,et al.  The dynamics of change: cancer patients' preferences for information, involvement and support. , 1997, Annals of oncology : official journal of the European Society for Medical Oncology.

[41]  Katrina Armstrong,et al.  Differences in information seeking among breast, prostate, and colorectal cancer patients: results from a population-based survey. , 2010, Patient education and counseling.

[42]  Anthea Tinker,et al.  A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience , 2014, Disability and rehabilitation.

[43]  Ellen Balka,et al.  Situating Internet Use: Information-Seeking Among Young Women with Breast Cancer , 2010, J. Comput. Mediat. Commun..

[44]  C. Pope,et al.  Using meta ethnography to synthesise qualitative research: a worked example , 2002, Journal of health services research & policy.

[45]  Jenny Donovan,et al.  Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. , 2003, Social science & medicine.

[46]  Mark Engel,et al.  Conducting a meta-ethnography of qualitative literature: Lessons learnt , 2008, BMC medical research methodology.

[47]  Alison Shaw,et al.  Decisions to use complementary and alternative medicine (CAM) by male cancer patients: information-seeking roles and types of evidence used , 2007, BMC complementary and alternative medicine.

[48]  E. McCaughan,et al.  Comparing cancer experiences among people with colorectal cancer: a qualitative study. , 2011, Journal of advanced nursing.

[49]  Alison Lowe,et al.  Experiences of Parents Who Have Children With Chronic Kidney Disease: A Systematic Review of Qualitative Studies , 2008, Pediatrics.

[50]  Martin Fishbein,et al.  Psychosocial Determinants of Cancer-Related Information Seeking Among Cancer Patients , 2011, Journal of health communication.