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

• 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.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Nyckelord

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

Människan i vården

Publikations- och innehållstyp

ref (ämneskategori)

art (ämneskategori)