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research-article
Author(s):
Dirkjan Kauw 1 ,
Han Repping-Wuts , PhD 1 , ,
Alida Noordzij 2 ,
Nike Stikkelbroeck , MD,PhD 1 ,
Ad Hermus , MD,PhD 1 ,
Marjan Faber , PhD 3
Publication date (Electronic): 25 February 2015
Journal: Journal of Medical Internet Research
Publisher: JMIR Publications Inc.
Keywords: online forum, self care, Cushing’s syndrome, Addison’s disease
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Addison’s disease and Cushing’s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. For this study a consecutive sample of 300 questions (“threads”) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. On an online patient forum for Cushing’s syndrome and Addison’s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. Abstract
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Most cited references19
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Patient-centredness in chronic illness: what is it and does it matter?
Susan Michie, Jane Miles, John A Weinman (2003)
The evidence as to whether patient-centredness is associated with beneficial physical and psychological outcomes is inconsistent. This review of published research on health care communication in chronic illness investigates whether (i) studies of patient-centred consultations use distinctive concepts, (ii) different concepts are differentially associated with health outcomes. Studies of patients with a chronic illness consulting a health professional were included if they measured health professional-patient interaction and a physical or psychological outcome. Thirty studies were identified, falling into two, reliably distinct, categories. In the first, health professionals took the patient's perspective and in the second, they sought to "activate" the patient. The 10 studies taking the latter approach were more consistently associated with good physical health outcomes than were the 20 studies taking the former approach. The suggestion that different types of patient-centredness have different associations with physical health outcomes should be investigated further in experimental studies.
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Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups
Cornelia F. van Uden-Kraan, Constance Drossaert, Erik Taal … (2008)
Background Patients who visit online support groups benefit in various ways. Results of our earlier study indicated that participation in online support groups had a profound effect on the participants’ feelings of “being empowered.” However, most studies of online patient support groups have focused on the members of these groups who actively contribute by sending postings (posters). Thus far, little is known about the impact for “lurkers” (ie, those who do not actively participate by sending postings). Objective In the present study, we explored if lurkers in online patient support groups profit to the same extent as posters do. Methods We searched the Internet with the search engine Google to identify all Dutch online support groups for patients with breast cancer, fibromyalgia, and arthritis. Invitations to complete an online survey were sent out by the owners of 19 groups. In the online questionnaire, we asked questions about demographic and health characteristics, use of and satisfaction with the online support group, empowering processes, and empowering outcomes. The online questionnaire was completed by 528 individuals, of which 109 (21%) identified themselves as lurkers. Results Lurkers (mean age 47 years) were slightly older than active participants (mean age 43 years, P = .002), had a shorter disease history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P = .004). No significant differences were found in other demographic variables. Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine (all P < .001), and because other members expected them to be there (P = .003). Lurkers and posters did not differ in their information-related reasons for visiting the online support group. Lurkers were significantly less satisfied with the online support group compared to posters (P < .001). With regard to empowering processes such as “exchanging information” and “finding recognition,” lurkers scored significantly lower than posters. However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as “being better informed,” “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “enhanced self-esteem,” and “increased optimism and control.” The exception was “enhanced social well-being,” which scored significantly lower for lurkers compared to posters (P < .001). Conclusion Our study revealed that participation in an online support group had the same profound effect on lurkers’ self-reported feelings of being empowered in several areas as it had on posters. Apparently, reading in itself is sufficient to profit from participation in an online patient support group.
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Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group.
Phoenix K H Mo, N Coulson (2008)
The present study examined the nature of social support exchanged within an online HIV/AIDS support group. Content analysis was conducted with reference to five types of social support (information support, tangible assistance, esteem support, network support, and emotional support) on 85 threads (1,138 messages). Our analysis revealed that many of the messages offered informational and emotional support, followed by esteem support and network support, with tangible assistance the least frequently offered. Results suggest that this online support group is a popular forum through which individuals living with HIV/AIDS can offer social support. Our findings have implications for health care professionals who support individuals living with HIV/AIDS.
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Author and article information
Contributors
Han Repping-Wuts:
Radboud University Medical CenterDepartment of Internal Medicine, Division EndocrinologyPO Box 9101Nijmegen, 6500 HBNetherlands31 24 361 68 1131 24 361 88 09han.repping-wuts@radboudumc.nl
ORCID: http://orcid.org/0000-0002-1294-0521
Journal
Journal ID (nlm-ta): J Med Internet Res
Journal ID (iso-abbrev): J. Med. Internet Res
Journal ID (publisher-id): JMIR
Title: Journal of Medical Internet Research
Publisher: JMIR Publications Inc. (Toronto, Canada )
ISSN (Print): 1439-4456
ISSN (Electronic): 1438-8871
Publication date Collection: March 2015
Publication date (Electronic): 25 February 2015
Volume: 17
Issue: 3
Electronic Location Identifier: e54
Affiliations
Author notes
Corresponding Author: Han Repping-Wuts han.repping-wuts@ 123456radboudumc.nl
Author information
Dirkjan Kauw http://orcid.org/0000-0003-1430-3830
Han Repping-Wuts http://orcid.org/0000-0002-1294-0521
Alida Noordzij http://orcid.org/0000-0003-3890-5019
Nike Stikkelbroeck http://orcid.org/0000-0001-5268-9370
Ad Hermus http://orcid.org/0000-0003-1075-2655
Marjan Faber http://orcid.org/0000-0001-6491-7035
Article
Publisher ID: v17i3e54
DOI: 10.2196/jmir.3869
PMC ID: 4392550
PubMed ID: 25720377
SO-VID: ef6280d4-73ce-4168-b920-03d3ccd04089
Copyright © ©Dirkjan Kauw, Han Repping-Wuts, Alida Noordzij, Nike Stikkelbroeck, Ad Hermus, Marjan Faber. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 25.02.2015.
License:
This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
History
Date received : 19 September 2014
Date revision requested : 09 October 2014
Date revision received : 16 January 2015
Date accepted : 04 February 2015
Categories
Subject: Original Paper
Subject: Original Paper
ScienceOpen disciplines: Medicine
Keywords: online forum,self care,cushing’s syndrome,addison’s disease
Data availability:
ScienceOpen disciplines: Medicine
Keywords: online forum, self care, cushing’s syndrome, addison’s disease
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