The Relationship Between Health Management and Information Behavior Over Time: A Study of the Illness Journeys of People Living With Fibromyalgia.

Publisher: JMIR Publications Country of Publication: Canada NLM ID: 100959882 Publication Model: Electronic Cited Medium: Internet ISSN: 1438-8871 (Electronic) Linking ISSN: 14388871 NLM ISO Abbreviation: J Med Internet Res Subsets: MEDLINE

Publication: <2011- > : Toronto : JMIR Publications
Original Publication: [Pittsburgh, PA? : s.n., 1999-

Adaptation, Psychological/*physiology ; Fibromyalgia/*psychology ; Fibromyalgia/*therapy ; Health Information Management/*methods; Chronic Disease ; Female ; Humans ; Male ; Middle Aged ; Self Care

Background: Over the course of a chronic illness, patients face many challenges, including understanding what is happening to them and developing an effective strategy for managing illness. While there is existing literature concerning how people seek health-related information and cope with chronic illnesses, there is a need for additional research on how information affects patients' understandings of their illness, and how changes in this understanding affect their health management strategies over time.
Objective: This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness.
Methods: A diversified recruitment strategy involving multiple media channels was used to recruit participants for an interview study. During the interviews, participants were asked to draw an "illness journey" timeline. The data were analyzed using a qualitative approach drawn from Interpretative Phenomenological Analysis and Grounded Theory.
Results: The study identified four main health management features of illness journeys: onset, progression toward diagnosis, acceptance, and development of an effective management strategy. The study then focused on how information seeking changes over illness journeys, particularly in terms of a transition from active information seeking to monitoring with intermittent focused searching. Last, the paper describes the information consumption and use processes that patients engaged in throughout their journey.
Conclusions: This study makes three important contributions to the field. First, it presents an integrated conceptualization of how health management and information behaviors are related on illness journeys. Second, it adds to our existing knowledge on health literacy and self-management of chronic illness. Third, the study has implications for health interface design.
Competing Interests: Conflicts of Interest: None declared.

Erratum in: J Med Internet Res. 2020 Aug 20;22(8):e23597. doi: 10.2196/23597. (PMID: 32816686)

Qual Health Res. 2007 Dec;17(10):1372-80. (PMID: 18000076)
Musculoskeletal Care. 2012 Dec;10(4):212-20. (PMID: 22736537)
BMC Musculoskelet Disord. 2009 Oct 07;10:124. (PMID: 19811630)
J Med Internet Res. 2015 Jan 22;17(1):e20. (PMID: 25616273)
Arthritis Rheum. 2009 Dec 15;61(12):1650-6. (PMID: 19950317)
Pain Res Manag. 2008 May-Jun;13(3):201-10. (PMID: 18592056)
Patient Educ Couns. 2009 Jan;74(1):61-9. (PMID: 18778909)
Patient Educ Couns. 2012 May;87(2):250-7. (PMID: 21930359)
Arthritis Care Res (Hoboken). 2013 May;65(5):777-85. (PMID: 23424058)
J Rheumatol. 2011 Oct;38(10):2238-46. (PMID: 21765102)
Patient Educ Couns. 2008 Oct;73(1):114-20. (PMID: 18640807)
Qual Health Res. 2017 Mar;27(4):462-473. (PMID: 26667880)
Soc Sci Med. 2007 Feb;64(3):577-88. (PMID: 17079063)
J Nurs Scholarsh. 2012 Jun;44(2):136-44. (PMID: 22551013)
Soc Sci Med. 2006 Dec;63(11):2962-73. (PMID: 16949713)
Pain. 2003 Sep;105(1-2):197-204. (PMID: 14499436)
Scand J Prim Health Care. 2007 Dec;25(4):250-5. (PMID: 18041660)
Health Care Women Int. 2013;34(8):694-706. (PMID: 23530542)
J Med Internet Res. 2012 Oct 23;14(5):e143. (PMID: 23092747)
Pain Res Treat. 2012;2012:426130. (PMID: 23213512)
Soc Sci Med. 2008 Jul;67(1):57-67. (PMID: 18423826)
J Med Internet Res. 2012 Jul 18;14(4):e105. (PMID: 22810046)
BMC Musculoskelet Disord. 2007 Mar 09;8:27. (PMID: 17349056)
J Clin Rheumatol. 2006 Jun;12(3):124-8. (PMID: 16755239)
Arch Intern Med. 2007 Nov 12;167(20):2192-200. (PMID: 17998491)
J Psychol. 2012 Jan-Apr;146(1-2):229-41. (PMID: 22303622)
Qual Health Res. 1999 Sep;9(5):575-87. (PMID: 10558368)
Soc Sci Med. 2008 Dec;67(12):2072-8. (PMID: 18952344)
BMC Public Health. 2012 Feb 14;12:130. (PMID: 22332990)
J Med Internet Res. 2015 Aug 19;17(8):e202. (PMID: 26290186)
Health Care Women Int. 2012;33(5):473-94. (PMID: 22497330)
Reumatismo. 2012 Sep 28;64(4):194-205. (PMID: 23024964)
BMC Public Health. 2012 Jan 25;12:80. (PMID: 22276600)
BMC Musculoskelet Disord. 2011 Jun 29;12:143. (PMID: 21714918)
Qual Health Res. 2008 Mar;18(3):405-17. (PMID: 18235163)
Curr Pain Headache Rep. 2003 Oct;7(5):362-8. (PMID: 12946289)
Qual Health Res. 2006 Jul;16(6):741-61. (PMID: 16760533)

Keywords: chronic disease; consumer health information; fibromyalgia; health knowledge, attitudes, practice; information seeking behavior; information use

Date Created: 20161027 Date Completed: 20170906 Latest Revision: 20200822

20250114

PMC5101414

10.2196/jmir.5309

27780794