Caring for ventilated children at home- The child's perspective

This study described the experiences of two Australian ventilator-dependent children who are cared for at home. A primary objective was to capture the voices of the children themselves. The study is constructivist and uses case study as the method. Data were generated with the children themselves, who drew pictures and told stories of children just like them. The technology-dependent children's lifestyles could be classed as normal in that, within the confines of their conditions, they did usual things. They found positive aspects of hospitalisation, such as getting good news, celebrating birthdays and receiving presents. However, they also suffered in that, when it came to hospitalisation, they were uncertain and anxious, particularly when exposed to needles, anaesthetic masks and operations. The presence of their tracheostomies restricted their activities and may have engendered feelings of self-consciousness or embarrassment. It was clear that they understood how their technology functioned. In this study, despite their circumstances, the children found positive and happy aspects of their lives. The study confirmed that children can meaningfully contribute to research. Listening to the child's voice and their participation in their care is now an acceptable practice.