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Quality of life and trust among young people with narcolepsy and their families, after the Pandemrix® vaccination: Protocol for a case-control study
Örebro University, School of Health Sciences. (LISAN)ORCID iD: 0000-0002-9209-5179
Faculty of Health, Science and Technology, Department of Health Sciences, Karlstad University, Karlstad, Sweden.
Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre, Region Örebro County, Örebro, Sweden.
Örebro University, School of Medical Sciences. Örebro University Hospital. Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
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2017 (English)In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 17, no 1, article id 183Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The extensive vaccination programme against swine flu resulted in an increased incidence of narcolepsy among children and adolescents. There is a need to explore if these young persons' experiences have affected their trust in healthcare, their willingness to participate in future prevention programmes, and their contacts with the healthcare system. The overall aim is to identify factors important for the life-situation of children and adolescents with narcolepsy and their families, and factors that correlate with trust in healthcare.

METHODS/DESIGN: Data will be collected via questionnaires from all available children with narcolepsy following the vaccination and their families, as well as a control group of children with diabetes and their families. Longitudinal descriptive interviews will also be conducted with a selection of 20-25 children and their families. Techniques from media research will be used for Internet-based data collection and analysis of information relating to narcolepsy from social media.

DISCUSSION: This project will use the situation of young persons with narcolepsy after the swine flu vaccination as a case to build a model that can be used in situations where trust in healthcare is essential. This model will be based on findings from the included studies on how trust is influenced by support, quality of life, burden of disease, impact on family, and use of social media. The model developed in this project will be beneficial in future situations where trust in healthcare is essential, such as new pandemic outbreaks but also for "everyday" adherence to health advice.

Place, publisher, year, edition, pages
BioMed Central, 2017. Vol. 17, no 1, article id 183
Keywords [en]
Life change events, Mass vaccination, Narcolepsy, Quality of life, Trust
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:oru:diva-59389DOI: 10.1186/s12887-017-0935-4ISI: 000408327800002PubMedID: 28835221Scopus ID: 2-s2.0-85028313608OAI: oai:DiVA.org:oru-59389DiVA, id: diva2:1136178
Note

Funding Agencies:

Örebro University Hospital Research Foundation

Available from: 2017-08-25 Created: 2017-08-25 Last updated: 2018-08-05Bibliographically approved

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Blomberg, KarinHagberg, LarsJonsson, ÖstenEriksson, Mats

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