Holding their own and being resilient: narratives of parents over the first 12 months of their child having tracheostomy

Abstract

Caring for a child with a tracheostomy can be challenging for parents and learning to safely manage their child’s airway can be frightening due to their child’s breathing issues, complex diagnosis and the difficult decisions they have to make. The aim of this longitudinal narrative study was to tell the stories of parents whose child had a new tracheostomy. Twenty-three narrative interviews were conducted with twelve parents from nine families at three time points over a 12-month period. Data were analysed using a socio-narratological approach. The stories told how parents were able to ‘hold their own’ despite experiencing shock, emotional upheaval and uncertainty during the period of their child's surgery. 'Holding their own' was possible for parents because resilience played an important part of their journey. Parents continued to be resilient as they adapted to being at home and dealt with ongoing challenging and stressful circumstances. All of the parents told stories reflecting on and recognising that there were times when they exhibited higher levels of resilience and times when their resilience was lower. Looking back on their experiences, parents appreciated that they reframed their initial often negative views about their child’s need for a tracheostomy into more positive understandings and a future orientated perspective.