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

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 analyzed 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 recognizing 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.