Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Chen AT

PROVIDER: S-EPMC5101414 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

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

Chen Annie T AT

Journal of medical Internet research 20161025 10

<h4>Background</h4>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 st ...[more]

PMID: 27780794

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Project description:Introduction and purposeInformal caregivers of persons living with dementia have significant unmet information needs that, if met, would better equip them to provide effective care. Despite the existence of health information technologies, websites, resources, and organizations dedicated to dementia caregiving, caregivers continue to report unmet information needs. Caregivers' continued unmet information needs suggest a misalignment between information products, and caregivers' information behavior-how caregivers generate, acquire, manage, use, communicate, and seek information. Researchers have developed conceptual models for understanding caregivers' information behavior, but these models are limited in that they are task-oriented, and they assume that caregivers' information needs will be met if they engage in information behavior. To address these limitations, the present study sought to explore caregivers' information behavior as a sociotechnical-systems-based process.MethodsWe conduced semi-structured interviews with 30 self-identified caregivers to explore their daily experience of caregiving activities, including their information behavior. We applied a process-based conceptual framework that takes into account inputs, processes, outputs, and feedback mechanisms within a sociotechnical system to guide analysis. The process of interest was caregivers' information behavior as modeled by the information-seeking and communication model (ISCM). We conducted a deductive content analysis guided by the components of the ISCM. We then used team-based affinity diagramming to collapse and categorize the ISCM components into inputs, processes, outputs, and feedback.ResultsWe developed a conceptual model to depict caregivers' information behavior as a sociotechnical-systems-based process of inputs, processes, and outputs that feedback into the system. The conceptual model consisted of three inputs (i.e., information users, information providers, and information products), three information seeking and communication processes (i.e., information access, information interaction, and information assessment and processing), two outputs (i.e., utility and credibility), and feedback.Discussion and conclusionBuilding on and addressing the gaps in previous information behavior models, our conceptual framework advances the previous task-level understandings of caregivers' information behavior into a comprehensive feedback-driven, process-level perspective consisting of context-based inputs, information seeking and communication processes, outputs, and feedback. A sociotechnical-systems-based understanding of caregivers' information behavior allows for misalignments between information providers and products, and caregivers' information behavior not only to be illuminated, but systematically addressed.

Project description:BACKGROUND:Self-management is an important factor in maintaining and promoting mental health and recovery from mental health challenges. Thus, it is important to assess and support mental health self-management. In this study, we aimed to develop the Japanese version of the Mental Health Self-management Questionnaire (MHSQ-J), a scale to assess mental health self-management strategy, and clarify its psychometric properties among people with mental illness living in Japan. METHODS:An anonymous self-administered survey including MHSQ-J was conducted for psychiatric outpatient users (N?=?295), and 104 of the participants completed MHSQ-J again about two weeks later. Internal consistency was assessed with Cronbach's ?, and test-retest reliability was confirmed by the intraclass correlation coefficient (ICC). Construct validity was assessed based on structural validity with confirmatory factor analysis (CFA) and exploratory factor analysis (EFA), and hypotheses testing. The Self-management Skill Scale, the University of Tokyo Health Sociology version of the Sense of Coherence Scale ver1.2, the Japanese version of Self-identified Stage of Recovery Part-B, the Japanese version of the Flourishing Scale, and the Japanese version of the WHO Disability Assessment Scale 2.0 were used for hypotheses testing. RESULTS:Data from 243 respondents were analyzed. The result of CFA, the goodness-of-fit indices showed marginal fit (AGFI?=?.830, CFI?=?.852, RMSEA?=?.072). EFA identified three factors (Clinical, Empowerment, and Vitality), and the results suggested that the factor structure of the Japanese version of MHSQ was similar to the original 3-factor structure. Significant correlations were found with the hypotheses testing variables related to self-management and recovery, especially on the total score, the Empowerment subscale, and the Vitality subscale. Cronbach's ? (Clinical: .65, Empowerment: .81, Vitality: .75, Total: .83) and ICC (Clinical: .75, 95% confidence interval (CI) [.62, .84], Empowerment: .81, 95% CI [.70, .88], Vitality: .62, 95% CI [.44, .75], Total: .84, 95% CI [.75, .90]) indicated good reliability. CONCLUSION:The results show that MHSQ-J has acceptable reliability and validity to measure the use of self-management strategies for mental health among community living people with mental illness in Japan.

Project description:OBJECTIVE:To explore ways in which occupational justice and social inclusion are conceptualised, defined and operationalised in highly stigmatised and chronic conditions of mental illness and HIV. DESIGN:This scoping review protocol followed Arksey and O'Malley's (2005) Scoping Review Framework. DATA SOURCES AND ELIGIBILITY:The following databases were searched for the period January 1997 to January 2019: Medline via PubMed, Scopus, Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Africa-Wide Information, Humanities International Complete, Web of Science, PsychInfo, SocINDEX and grey literature.Eligible articles were primary studies, reviews or theoretical papers which conceptualised, defined and/or operationalised social inclusion or occupational justice in mental illness or HIV. STUDY APPRAISAL AND SYNTHESIS:We undertook a three-part article screening process. Screening and data extraction were undertaken independently by two researchers. Arksey's framework and thematic analysis informed the collation and synthesis of included papers. RESULTS:From 3352 records, we reviewed 139 full articles and retained 27 for this scoping review. Definitions of social inclusion and occupational justice in the domains of mental illness and HIV were heterogeneous and lacked definitional clarity. The two concepts were conceptualised as either processes or personal experiences, with key features of community participation, respect for human rights and establishment and maintenance of healthy relationships. Conceptual commonalities between social inclusion and occupational justice were premised on social justice. CONCLUSIONS:To address lack of clarity, we propose further and concurrent exploration of these concepts, specifically with reference to persons with comorbid mental health disorders such as substance use disorders and HIV living in low-income countries. This should reflect contextual realities influencing community participation, respect for human rights and meaningful occupational participation. From this broadened understanding, quantitative measures should be applied to improve the standardisation of measurements for occupational justice and social inclusion in policy, research and practice.

Project description:BACKGROUND:Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS). METHODS:Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences. RESULTS:Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public. CONCLUSIONS:There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.

Project description:Background and objectivesLiving donor guidelines-both national and international-either do not address or are vague about what information can be shared between prospective living donors and transplant candidates, as well as when to make such disclosures and who should make them. This study explored the attitudes of donors and recipients regarding how much information they believe should be shared.Design, setting, participants, & measurementsTwo Email invitations were sent by the National Kidney Foundation (national headquarters) to its Email listservs, inviting members to participate in an online survey to assess the attitudes of kidney transplant stakeholders regarding the disclosure of health and health risk behavior information.ResultsFrom approximately 4200 unique Email addresses, 392 (9.3%) respondents completed part or all of the survey. The analyses were limited to the 236 respondents who self-identified as either donors (potential and actual, n=160) or recipients (candidates and actual, n=76). Overall, 79% (186 of 234) of respondents supported disclosure of general recipient health information that would affect post-transplant outcome to donors, and 88% (207 of 235) supported disclosure of general donor health information to recipients. Recipients and donors were also supportive of sharing donor and recipient information, particularly information relevant to graft and patient survival. There is some reticence, however, about sharing social information. The closer the relationship, the more information they are willing to share. Both donors and recipients wanted the transplant team involved in the information disclosure. Over three quarters of donors (79%) and recipients (78%) did not think the recipient had a right to know why a donor was excluded from donating.ConclusionsBoth donors and recipients want a significant amount of health information to be disclosed. The opinions of other stakeholders need to be surveyed to determine whether a revision of current policies and practices is warranted.

Dataset Information

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

Publications

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

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