gms | German Medical Science

Background and Purpose: Developments in medical technology and treatment have increased the survival rates of children with serious illnesses or injuries. Some of these children fail to breathe independently and require home mechanical ventilation (HMV) in a long term perspective. Only a small number of studies have been published that allowed HMV assisted children to be heard, i.e. interviewed. The aim of this study was therefore to explore everyday-life experiences of children and young people with HMV.

Methods and Research Focus: The presentation is based on nine interviews with children and young people with HMV.

Methodological and Theoretical Focus: Photovoice was used to supplement the data collection process. Data were analyzed using an inductive and interpretive approach to qualitative content analysis. A comprehensive and careful analysis revealed that the parent's voice was sometimes a part of the child voice when the child's voice itself was not strong enough to conduct a long conversation.

Results: The participants’ everyday-life’s included major challenges, but they made it perfectly clear that it was their way of living. They did not consider themselves as sick unless something extraordinary happened. But everyday-life was also characterized by vulnerability as there always was a risk of becoming seriously ill by harmless viruses and bacteria. They could be denied personal care assistance, which dramatically would reduce their ability to participate in activities outside home.

Various technologies; modern medical technology but also social media, blogs and online computer games made the outside world reachable and possible to attend.

Conclusions: Listening to these children’s and young people’s own voices is a prerequisite for gaining knowledge about how to best offer good-quality care which harmonize with a lifestyle that they appreciate.