Lay information mediary behavior uncovered: exploring how nonprofessionals seek health information for themselves and others online.

OBJECTIVES This research studied motivations for, barriers to, and effects of online health information seeking and explored lay information mediary behavior (LIMB) characteristics in the consumer health information domain. Lay information mediaries (LIMs) seek information on behalf or because of others, without necessarily being asked to do so or engaging in follow up, and have represented more than 50% of health information seekers in prior studies. METHODS A web-based survey was posted on NC Health Info (NCHI) with 211 respondents, self-identified per the information need that brought them to NCHI as 20% LIMs (n = 43), 58% direct users (n = 122), and 22% health or information providers (n = 46). Follow-up telephone interviews were performed with 10% (n = 21). Interview analysis focused on lay participants (n = 15 LIMs and direct users combined). Interviewees were reclassified post-survey as 12 LIMs and 3 direct users when studied information behavior extended beyond NCHI search. Interview data were analyzed using grounded theory approach. RESULTS Surveyed LIMs were 77% female (n = 33) and searched on behalf or because of family members (81%, n = 35) and people they felt "extremely close" to (77%, n = 33). LIMs reported various information seeking barriers "sometimes" to "often." LIMs searched mostly without prompting (51%, n = 22). Interview results triangulated survey findings regarding gender, tie strength, and prompting. CONCLUSIONS LIMB may be related to gender and relationship tie strength and appears more internally than externally motivated. Further LIMB research is warranted.

[1]  A. Strauss,et al.  The discovery of grounded theory: strategies for qualitative research aldine de gruyter , 1968 .

[2]  Saul Soloway,et al.  Order and chaos , 1971 .

[3]  Arthur Kleinman,et al.  Culture, Illness, and Care: Clinical Lessons from Anthropologic and Cross-Cultural Research , 1978 .

[4]  B. Israel,et al.  Social Networks and Social Support: Implications for Natural Helper and Community Level Interventions , 1985, Health education quarterly.

[5]  E. Guba,et al.  Lincoln, Yvonna, and Egon Guba, "Postpositivism and the Naturalist Paradigm," pp. 14-46 in Yvonna Lincoln and Egon Guba, Naturalistic Inquiry . Beverly Hills, CA: Sage, 1985.* , 1985 .

[6]  A. Favazza,et al.  The Illness Narratives: Suffering, Healing, and the Human Condition , 1988 .

[7]  J. Odenkirchen,et al.  Meeting information needs of significant others: use of the Cancer Information Service. , 1990, Patient education and counseling.

[8]  Cheryl Metoyer-Duran,et al.  Information-seeking behavior of gatekeepers in ethnolinguistic communities : overview of a taxonomy , 1991 .

[9]  L. Baker,et al.  Physician-patient communication from the perspective of library and information science. , 1994, Bulletin of the Medical Library Association.

[10]  George Contopoulos,et al.  Order and chaos , 1994 .

[11]  J. Medalie.  The Caregiver as the Hidden Patient: Challenges for Medical Practice , 1994 .

[12]  Joan C. Durrance.  Factors That Influence Reference Success: What Makes Questioners Willing to Return? , 1995 .

[13]  Suzanne M. Miller,et al.  Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management , 1995, Cancer.

[14]  Kathleen Ell,et al.  Social networks, social support and coping with serious illness: the family connection. , 1996, Social science & medicine.

[15]  D E Forsythe,et al.  New bottles, old wine: hidden cultural assumptions in a computerized explanation system for migraine sufferers. , 1996, Medical anthropology quarterly.

[16]  L. Layne,et al.  "How's the baby doing?" Struggling with narratives of progress in a neonatal intensive care unit. , 1996, Medical anthropology quarterly.

[17]  L Tetzlaff,et al.  Consumer informatics in chronic illness. , 1997, Journal of the American Medical Informatics Association : JAMIA.

[18]  Information Seeking and Information Needs of Low Income African American Households: Wynnewood Healthy Neighborhood Project. , 1997 .

[19]  Melissa Gross,et al.  The Imposed Query: Implications for Library Service Evaluation. , 1998 .

[20]  K. Pettigrew,et al.  Theories for practitioners: two frameworks for studying consumer health information-seeking behavior. , 1999, Bulletin of the Medical Library Association.

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

[22]  T. Ferguson,et al.  Online patient-helpers and physicians working together: a new partnership for high quality health care , 2000, BMJ : British Medical Journal.

[23]  P. Zoë Stavri,et al.  Personal Health Information-Seeking: A Qualitative Review of the Literature , 2001, MedInfo.

[24]  R. Kravitz,et al.  Health information on the Internet: accessibility, quality, and readability in English and Spanish. , 2001, JAMA.

[25]  R. J. Cline,et al.  Consumer health information seeking on the Internet: the state of the art. , 2001, Health education research.

[26]  L. Baker,et al.  Consumer Health Information for Public Librarians , 2002 .

[27]  Suzanne Bakken,et al.  Implementing a Web-based Information Resource at an Inner-city Community Church: Lessons Learned , 2002, Computers, informatics, nursing : CIN.

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

[29]  Joan C. Durrance,et al.  Facilitating community information seeking using the Internet: Findings from three public library-community network systems , 2002, J. Assoc. Inf. Sci. Technol..

[30]  Adolescents' perceptions of the internet as a health information source , 2002 .

[31]  C. Rees,et al.  Information Needs and Information-seeking Behaviors of Men With Prostate Cancer and Their Partners: A Review of the Literature , 2002, Cancer nursing.

[32]  John V. Richardson,et al.  Understanding Reference Transactions: Transforming an Art into a Science , 2002 .

[33]  Joshua Fogel,et al.  Internet use for cancer information among racial/ethnic populations and low literacy groups. , 2003, Cancer control : journal of the Moffitt Cancer Center.

[34]  K. Yabroff,et al.  Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. , 2003, Journal of pain and symptom management.

[35]  B. Dervin,et al.  Sense-Making Methodology Reader: Selected Writings of Brenda Dervin , 2003 .

[36]  Family caregiver Internet experiences , 2003 .

[37]  Kevin S. Rioux,et al.  Information acquiring-and-sharing in Internet-based environments: an exploratory study of individual user behaviors , 2004 .

[38]  Dagobert Soergel,et al.  Helping Healthcare Consumers Understand: An "Interpretive Layer" for Finding and Making Sense of Medical Information , 2004, MedInfo.

[39]  G. Frydman,et al.  The first generation of e-patients , 2004, BMJ : British Medical Journal.

[40]  L. Kristjanson,et al.  Palliative Care for Families: Remembering the Hidden Patients , 2004, Canadian journal of psychiatry. Revue canadienne de psychiatrie.

[41]  James E. Andrews,et al.  From two-step flow to the Internet: The changing array of sources for genetics information seeking , 2004, J. Assoc. Inf. Sci. Technol..

[42]  J. Drew Procaccino,et al.  Toward wellness: Women seeking health information , 2004, J. Assoc. Inf. Sci. Technol..

[43]  D. Goldsmith,et al.  Social Support and the Management of Uncertainty for People Living With HIV or AIDS , 2004, Health communication.

[44]  J. Burkell,et al.  What are the chances? Evaluating risk and benefit information in consumer health materials. , 2004, Journal of the Medical Library Association : JMLA.

[45]  Robert A. Greenes,et al.  Positive attitudes and failed queries: an exploration of the conundrums of consumer health information retrieval , 2004, Int. J. Medical Informatics.

[46]  Mark Hepworth,et al.  A framework for understanding user requirements for an information service: Defining the needs of informal carers , 2004, J. Assoc. Inf. Sci. Technol..

[47]  Ellen Gay Detlefsen.  Where Am I to Go? Use of the Internet for Consumer Health Information by Two Vulnerable Communities , 2004, Libr. Trends.

[48]  Gunther Eysenbach,et al.  Improving the Quality of Web Surveys: The Checklist for Reporting Results of Internet E-Surveys (CHERRIES) , 2004, Journal of medical Internet research.

[49]  B. Zebrack,et al.  Caring for family members with chronic physical illness: A critical review of caregiver literature , 2004, Health and quality of life outcomes.

[50]  David A. Kindig,et al.  Health literacy : a prescription to end confusion , 2004 .

[51]  MedlinePlus Goes Local in NC , 2004 .

[52]  S. Cotten,et al.  Characteristics of online and offline health information seekers and factors that discriminate between them. , 2004, Social science & medicine.

[53]  Cynthia A Olney,et al.  High school peer tutors teach MedlinePlus: a model for Hispanic outreach. , 2005, Journal of the Medical Library Association : JMLA.

[54]  Jan C. Hoffman.  Awash in information, patients face a lonely, uncertain road. , 2005, The New York times on the Web.

[55]  Daniel P. Lorence,et al.  Assessing Health Consumerism on the Web: A Demographic Profile of Information-Seeking Behaviors , 2006, Journal of Medical Systems.

[56]  S. Barnoy,et al.  Whose informational needs are considered? A comparison between cancer patients and their spouses' perceptions of their own and their partners' knowledge and informational needs. , 2005, Social science & medicine.

[57]  Carsten S. Østerlund,et al.  Mother Knows Best: Medical Record Management for Patients with Spina Bifida During the Transition from Pediatric to Adult Care , 2005, AMIA.

[58]  K. Fisher,et al.  Theories of information behavior , 2005 .

[59]  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.

[60]  Christina Courtright,et al.  Health information-seeking among Latino newcomers: an exploratory study , 2005, Inf. Res..

[61]  Sandra Erdelez.  Information Encountering: It's More Than Just Bumping into Information , 2005 .

[62]  Ronald E. Rice,et al.  Influences, usage, and outcomes of Internet health information searching: Multivariate results from the Pew surveys , 2006, Int. J. Medical Informatics.

[63]  Michele L. Ybarra,et al.  Help seeking behavior and the Internet: A national survey , 2006, Int. J. Medical Informatics.

[64]  Roma M. Harris,et al.  An examination of the health information seeking experiences of women in rural Ontario, Canada , 2006, Inf. Res..

[65]  Justin Starren,et al.  Consumer Health Informatics and Telehealth , 2006 .

[66]  Todd H Wagner,et al.  Who searches the internet for health information? , 2006, Health services research.

[67]  Karen E. Fisher,et al.  'What's past is prologue': towards a general model of lay information mediary behaviour , 2007, Inf. Res..

[68]  Maged N Kamel Boulos,et al.  The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. , 2007, Health information and libraries journal.

[69]  Ophelia T. Morey.  Health information ties: preliminary findings on the health information seeking behaviour of an African-American community , 2007, Inf. Res..

[70]  Elaine Toms,et al.  How consumers search for health information , 2007, Health Informatics J..

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

[72]  H. Daniels,et al.  A study of information seeking by cancer patients and their carers. , 2007, Clinical oncology (Royal College of Radiologists (Great Britain)).

[73]  Cynthia A Olney,et al.  MedlinePlus and the challenge of low health literacy: findings from the Colonias project. , 2007, Journal of the Medical Library Association : JMLA.

[74]  Gunther Eysenbach,et al.  From Intermediation to Disintermediation and Apomediation: New Models for Consumers to Access and Assess the Credibility of Health Information in the Age of Web2.0 , 2007, MedInfo.

[75]  Li Chen,et al.  A study of peer-to-peer information in a domain of uncertainty: the case of epilepsy , 2007, Health Informatics J..

[76]  J. Kronenfeld,et al.  Chronic illness and health-seeking information on the Internet , 2007, Health.

[77]  N. Peña-Purcell,et al.  Hispanics' use of Internet health information: an exploratory study. , 2008, Journal of the Medical Library Association : JMLA.

[78]  杨琤.  Promoting Health Literacy for Health Benefits , 2009 .

[79]  The NCI’s Cancer Information Service: Meeting the public’s cancer information needs via the internet , 2007, Journal of Cancer Education.