A narrative inquiry into the stories parents tell of having a child with a tracheostomy

Abstract

Aim of the study:
Caring for a child with a tracheostomy can be challenging and time consuming for parents. The personal challenge to manage their child’s airway safely can be a frightening prospect. However, there is a lack of longitudinal qualitative research on parents’ views and experiences of having a child with a tracheostomy. This longitudinal study aimed to tell the stories of parents whose child had a new tracheostomy.
Methods:
Narrative inquiry was adopted as the methodological approach for this study, which explores parent’s stories at three time points during the first 12 months following their child having a tracheostomy. A convenience sample of parents whose child had a tracheostomy was recruited. Twenty three narrative interviews with nine families (3 fathers and 9 mothers) took place. The data have been analysed using socio-narratology (Frank, 2010) which allowed specific questions to seek a movement of thought through the data.
Results:
The findings revealed that the parents initially experienced shock, emotional upheaval and uncertainty about their child’s condition. As their child’s health condition settled (post tracheostomy) life became calmer and parents showed the capacity to function. However, even when their child had returned home the parents continued to experience times of stress. The theoretical underpinning of this study is the process of resilience. The ABC-X model of parental resilience: a process of reframing, underpins the discussion in this study. The model encompasses the interplay of risk factors and protective factors. The parents were able to reflect and recognise that there were times when they exhibited higher levels of resilience and times where their resilience was lower. One of the key aspects of the parents’ building resilience over time was the elasticity of the experience, which reflects the parents’ ability to be stretched by situations and to reframe their lives and beliefs, arriving at fresh understandings as a result of their experiences.
Conclusion:
Acknowledgement that parents experience a protracted process of building resilience after their child’s tracheostomy would enable professionals to provide ongoing support throughout this period of reframing their lives.