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.
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.
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.
European Centre for Disease Prevention and Control. Narcolepsy in association with pandemic influenza vaccination (a multi-country European epidemiological investigation) Stockholm: ECDE2012 September.
Persson I, Granath F, Askling J, Ludvigsson JF, Olsson T, Feltelius N. Risks of neurological and immune-related diseases, including narcolepsy, after vaccination with Pandemrix: a population- and registry-based cohort study with over 2 years of follow-up. J Intern Med. 2017;281(1):102–4. doi: 10.1111/joim.12581. CrossRefPubMed
Swedish Research Council. The Swedish Research Council's updated mapping of research relevant to the etiology and treatment of the disease narcolepsy. Stockholm: Swedish Research Council; 2017.
Lundgren B. ‘rhyme or reason?’ saying no to mass vaccination: subjective re-interpretation in the context of the a(H1N1) influenza pandemic in Sweden 2009–2010. Med Humanit. 2015; doi: 10.1136/medhum-2015-010684.
Björkman I, Sanner MA. The Swedish A(H1N1) vaccination campaign—Why did not all Swedes take the vaccination? Health policy (Amsterdam, Netherlands). 2013;109(1):63–70. CrossRef
Anonymous. Mammor mot Gardasil. 2013. http://www.mammormotgardasil.nu/. Accessed Feb 21, 2013.
Karlström L. Vaccin & Biverkningar. 2013. http://vaccin.me/2012/05/12/mpr-vaccin-kan-orsaka-kramper-koma-beteendeforandringar-och-dod/. Accessed Feb 21, 2013.
Blomberg K. From invitation to follow-up. Women’s experiences of participating or not participating in cervical cancer screening. Stockholm: Karolinska Institutet; 2009.
Anonymous. Livet efter sprutan - Pandemrix! 2013. http://liveteftersprutan.blogspot.se/. Accessed Feb 21, 2013.
Rotenberg KJ, Petrocchi S, Sargeant S, Lenney W, Rimmington LA. Longitudinal investigation of the relation between asthmatic children’s adherence to prescribed medical regimes and their and their parents’ trust beliefs in physicians. J Pediatr Psychol. 2014; (under review)
Anonymous. The Narcoleptic Blog. 2013. http://narcolepticblog.tumblr.com/. Accessed Feb 21, 2013.
Anonymous. Narkolepsimamman. 2013. http://narkolepsimamman.blogspot.se/. Accessed Feb 21, 2013.
Bennet LW. The personalization of politics: political identity, social media, and changing patterns of participation. The ANNALS of the American Academy of Political and Social Science. 2012;644(1):20–39. CrossRef
Eriksson M. Nätens kriskommunikation. Lund: Studentlitteratur; 2009.
Kies R. Promises and limits of web-deliberation New York: Palgrave Macmillan; 2010. CrossRef
Larsson AO. Doing things in relation to machines : studies on online interactivity. Uppsala: Acta Universitatis Upsaliensis; 2012.
SWEDIS (SWEdish drug information system [database on the internet]”. Abandoned system, replaced by BiSi database https://lakemedelsverket.se/bisi. Accessed 20 Aug 2017.
Medical Products Agency. Nyheter från Läkemedelsverket den 1 februari 20122012.
Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A, et al. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research. 2005;8(2):94–104. doi: 10.1111/j.1524-4733.2005.04054.x. CrossRef
Sullivan M, Karlsson J, Ware JE, Jr. The Swedish SF-36 health survey--I. Evaluation of data quality, scaling assumptions, reliability and construct validity across general populations in Sweden. Soc Sci Med 1995;41(10):1349–1358. doi:027795369500125Q.
Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, et al. The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2007;16(8):1347–56. doi: 10.1007/s11136-007-9240-2. CrossRef
Farnik M, Brozek G, Pierzchala W, Zejda JE, Skrzypek M, Walczak L. Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease. Health Qual Life Outcomes. 2010;8:151. doi: 10.1186/1477-7525-8-151. CrossRefPubMedPubMedCentral
Hansen D. Exploring social media relationships. On the Horizon. 2011;19(1):43–51. CrossRef
Price B. Laddered questions and qualitative data research interviews. J Adv Nurs 2002;37(3):273–281. doi:2086.
- Quality of life and trust among young people with narcolepsy and their families, after the Pandemrix® vaccination: protocol for a case-control study
Agneta Anderzén Carlsson
Mats H. Eriksson
- BioMed Central
Neu im Fachgebiet Pädiatrie
Meistgelesene Bücher aus dem Fachgebiet
e.Med Kampagnen-Visual, Mail Icon II