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Patient-reported benefits from patient organization magazines and Internet-based peer support in Menieres disease
Linköping University, Department of Behavioural Sciences and Learning, Disability Research. Linköping University, Faculty of Arts and Sciences. Linköping University, The Swedish Institute for Disability Research. Lamar University, TX 77010 USA; Audiol India, India; Manipal University, India.
University of Tampere, Finland.
University of Tampere, Finland; Second Mil Medical University, Peoples R China.
University of Helsinki, Finland.
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2017 (English)In: Patient Preference and Adherence, ISSN 1177-889X, E-ISSN 1177-889X, Vol. 11, 1851-1857 p.Article in journal (Refereed) Published
Abstract [en]

Objectives: To facilitate self-help, the Finnish Menieres Federation (FMF) provides various kinds of support to persons with Menieres disease (MD), which includes patient magazines (PM) and Internet-based peer support (iPS). The current study aimed to evaluate the benefits reported by MD patients in terms of PM and iPS. Method: The study used a cross-sectional survey design with a mixture of structured and open-ended questions administered online. A sample of 185 patients from the FMF membership database provided complete data. Results: Ninety-two percent of the respondents rated PM as useful, or very useful. The main benefits of PM included: information on the disease and complaints, information about elements of peer support program, patients experience with useful positive case studies, relevant news on MD, and information of activity of the FMF. Of the 185 persons, 68 reported that they did not have a need for peer support as their disease was either in silent phase or did not cause any annoyance. The main reasons for nonuse were: mild disease, personal reasons, and problems in using. Regarding the benefits of iPS, 75% of recent and 64% of chronic MD patients said that they would benefit from such a program. The main benefits of iPS included: reliable information on the disease and its management, peer support useful for coping with the disease, information about managing MD symptoms, information about managing attitude, and information about therapy. Moreover, the study identified different groups of individuals, which included: nonusers of support from patient organizations, those who used the support but did not feel they benefited, and those who used and also benefited from such programs. Conclusion: The current study results provide some information about the preferences of MD patients regarding different forms of support and could certainly prove helpful while developing wider support strategies.

Place, publisher, year, edition, pages
DOVE MEDICAL PRESS LTD , 2017. Vol. 11, 1851-1857 p.
Keyword [en]
Menieres disease; chronic condition; peer support; self-help; self-management
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-143002DOI: 10.2147/PPA.S142257ISI: 000413868100001OAI: oai:DiVA.org:liu-143002DiVA: diva2:1156521
Available from: 2017-11-13 Created: 2017-11-13 Last updated: 2017-12-07

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Manchaiah, Vinaya
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Disability ResearchFaculty of Arts and SciencesThe Swedish Institute for Disability Research
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CiteExportLink to record
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