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'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation.
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0003-2972-6908
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0001-7067-2687
University of Borås, Faculty of Caring Science, Work Life and Social Welfare.ORCID iD: 0000-0002-0047-9723
Department of Health and Rehabilitation, Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg.
2018 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 1, no 13Article in journal (Refereed) Published
Abstract [en]

Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries, including those receiving home mechanical ventilation, which is a small but growing group. The aim of this study was to explore everyday life experiences of children and young people living with home mechanical ventilation (HMV). Data were obtained through interviews with nine participants. The interviews were supported by photovoice methodology: photographs taken by the participants before or during the interviews were used to facilitate conversation. Interview data were analyzed using qualitative content analysis. The findings revealed that everyday life on a ventilator can be described as including power but simultaneously as characterized by vulnerability to the outside world, comparable to balancing on a tightrope. Various types of technology, both information and communication technology (ICT) and vital medical technology, enabled the participants to engage with the world around them. This study contributes knowledge about the experiences of children and young people with HMV, who depict their lives as good and valuable. The study also underscores, when designing plans and home support, it is necessary to take a sensible approach to personal experiences of what a good life is and what resources are needed to attain and maintain health.

Place, publisher, year, edition, pages
2018. Vol. 1, no 13
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Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hb:diva-13611DOI: 10.1177/1367493517749328PubMedID: 29298495OAI: oai:DiVA.org:hb-13611DiVA, id: diva2:1179560
Available from: 2018-02-01 Created: 2018-02-01 Last updated: 2018-02-05Bibliographically approved

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Israelsson-Skogsberg, ÅsaHedén, Lena ELindahl, Berit

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