Quality of life and trust among young people with narcolepsy and their families, after the Pandemrix® vaccination: protocol for a case-control study

Autor: Lars Hagberg, Agneta Anderzén Carlsson, Östen Jonsson, Karin Blomberg, Mats Eriksson, Lena Leissner
Rok vydání: 2015
Předmět:
Male
Quality of life
medicine.medical_specialty
Adolescent
Cross-sectional study
Mass vaccination
Nursing
Trust
03 medical and health sciences
Study Protocol
0302 clinical medicine
Quality of life (healthcare)
Clinical Protocols
Professional-Family Relations
Life change events
Health care
Pandemic
medicine
Pandemrix
Health Status Indicators
Humans
Social media
030212 general & internal medicine
Longitudinal Studies
Prospective Studies
Psychiatry
Child
Qualitative Research
Narcolepsy
Retrospective Studies
Sweden
business.industry
Omvårdnad
Infant
Professional-Patient Relations
Patient Acceptance of Health Care
medicine.disease
Cross-Sectional Studies
Influenza Vaccines
Family medicine
Case-Control Studies
Child
Preschool
Pediatrics
Perinatology and Child Health
Female
business
030217 neurology & neurosurgery
Qualitative research
Zdroj: BMC Pediatrics
ISSN: 1471-2431
Popis: 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.
Databáze: OpenAIRE
Externí odkaz: