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'I'm almost never sick': Everyday life experiences of children and young people with home mechanical ventilation

Artikel i vetenskaplig tidskrift
Författare A. Israelsson-Skogsberg
L. Heden
B. Lindahl
Katja Laakso
Publicerad i Journal of Child Health Care
Volym 22
Nummer/häfte 1
Sidor 6-18
ISSN 1367-4935
Publiceringsår 2018
Publicerad vid Institutionen för neurovetenskap och fysiologi, sektionen för hälsa och rehabilitering
Sidor 6-18
Språk en
Länkar dx.doi.org/10.1177/1367493517749328
Ämnesord Adolescent, child, content analysis, home health care, mechanical ventilation, qualitative studies, long-term ventilation, quality-of-life, dependent children, health, care, adults, technology, families, services, outcomes, Nursing, Pediatrics
Ämneskategorier Hälsovetenskaper

Sammanfattning

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.

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