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

• Published in: Journal of medical Internet research Vol. 18; no. 10; p. e269
• Main Author: Chen, Annie T
• Format: Journal Article
• Language: English
• Published: Canada Gunther Eysenbach MD MPH, Associate Professor 25.10.2016; JMIR Publications
• Subjects: Adaptation, Psychological - physiology; Age; Chronic Disease; Chronic fatigue syndrome; Chronic illnesses; Consumption; Disease management; Female; Fibromyalgia; Fibromyalgia - psychology; Fibromyalgia - therapy; Grounded theory; Health behavior; Health Information Management - methods; Health literacy; Humans; Information seeking behavior; Intermittent; Interpretative phenomenological analysis; Interviews; Male; Medical diagnosis; Middle Aged; Original Paper; Pain; Participation; Recruitment; Self Care; Selfmanagement; Social isolation; Social networks; Social research; Social support; Support groups; health knowledge, attitudes, practice; information use; information seeking behavior; consumer health information; fibromyalgia; chronic disease
• ISSN: 1438-8871; 1439-4456; 1438-8871
• DOI: 10.2196/jmir.5309

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. This study examined how health management, information seeking, and information consumption and use processes are related throughout an illness. 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. 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. 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.