Feeling stretched: parents’ narratives about challenges to resilience when their child has a tracheostomy

Abstract

This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. This study employed a longitudinal qualitative design. Unstructured narrative interviews with 12 parents (from 9 families), whose child had a new tracheostomy, were undertaken at three time points over 12 months. Data were analysed using a socio-narratology method. Findings reveal the journey parents experienced, how their feelings changed, and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Stories told by parents early in their journey revealed emotional upheaval, negative emotions, stress, and shock. Due to medical need, parents had little or no choice for their child to have a tracheostomy. Once their child’s life was out of danger, parents started to reframe their experiences and beliefs. Resilience played a major part in how parents perceived and faced their situation, allowing them to deal with what came their way and to move forward with their lives. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points. Parents talked feeling stretched by the challenges they faced and reframing their perspectives about their child’s tracheostomy. Parents’ resilience and reframing is discussed in relation to the ABC-X model. This study identifies a theoretical model (ABC-X Model of Parental Resilience and Reframing) that explains this process of change. This results in transferable knowledge, useful for understanding and explaining the experience of other parents and families.