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BMC Pulm Med. 2016 Jan 12;16:4. doi: 10.1186/s12890-016-0167-7.

Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment.

Author information

1
Department of Community and Behavioral Health, Colorado School of Public Health and the Adult & Child Center for Health Outcomes Research and Delivery Science (ACCORDS), University of Colorado School of Medicine, CO University of Colorado Anschutz Medical Campus, Aurora, CO, USA. karen.albright@ucdenver.edu.
2
Department of Sociology and Criminology, University of Denver, Denver, CO, USA. karen.albright@ucdenver.edu.
3
Department of Pediatric Infectious Disease, University of Colorado School of Medicine, Aurora, CO, USA. tarik.walker@ucdenver.edu.
4
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. msbaird49@comcast.net.
5
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. LRERES@COMCAST.NET.
6
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. farnswortht@njhealth.org.
7
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. fierk@njhealth.org.
8
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. Dolly@pfstrategies.org.
9
PF Strategies, LLC, Black Hawk, CO, USA. Dolly@pfstrategies.org.
10
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. marjkorn@yahoo.com.
11
Columbia University Medical Center, New York, NY, USA. dl427@columbia.edu.
12
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. mccormickm1@comcast.net.
13
Kaiser Permanente, Aurora, CO, USA. John.F.Steiner@kp.org.
14
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. tvier@comcast.net.
15
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. wamboldtf@njhealth.org.
16
Participation Program for Pulmonary Fibrosis (P3F), National Jewish Health, Denver, CO, USA. swigrisj@njc.org.
17
Interstitial Lung Disease Program, National Jewish Health, 1400 Jackson Street, Denver, CO, 80206, USA. swigrisj@njc.org.

Abstract

BACKGROUND:

Pulmonary fibrosis (PF) is a rare, progressive disease that affects patients and their loved ones on many levels. We sought to better understand the needs and interests of PF patients and their loved ones (collectively "reader-participants") by systematically analyzing their engagement with the World Wide Web (the current version referred to as Web 2.0).

METHODS:

Data were collected from three PF-focused, interactive websites hosted by physician-investigators with expertise in PF. All data generated by reader-participants for approximately 10 months were downloaded and then analyzed using qualitative content analysis methods.

RESULTS:

PF experts posted 38 blog entries and reader-participants posted 40 forum entries. Blogs received 363 responses, and forum entries received 108 responses from reader-participants. Reader-participants primarily used the three websites to seek information from or offer a contribution to the PF community. Information was sought about PF symptoms, diagnosis, prognosis, treatments, research, pathophysiology, and disease origin; reader-participants also made requests for new posts and pleas for research and sought clarification on existing content. Contributions included personal narratives about experiences with PF, descriptions of activities or behaviors found to be helpful with PF symptoms, resources or information about PF, and supportive comments to other PF sufferers.

CONCLUSIONS:

PF patients and their loved ones engage the Web 2.0 environment at these PF-focused sites to satisfy their needs to better understand PF and its impacts and to support others facing similar challenges. Clinicians may find it beneficial to encourage PF patients' involvement in internet forums that foster dynamic, bi-directional information sharing.

PMID:
26754048
PMCID:
PMC4709949
DOI:
10.1186/s12890-016-0167-7
[Indexed for MEDLINE]
Free PMC Article

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