Starting out in haziness’: Parental experiences surrounding the diagnosis of their child’s non-malignant life-limiting condition in Ireland

Abstract

PURPOSE: To explore parental experiences surrounding the diagnosis of their child’s non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: ‘Starting out in haziness’ was the central concept when parents’ recounted the time they learnt of their child’s diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: ‘Entering a whole new world’, ‘Acquiring a learner permit’ and ‘Navigating the unknown territory’. CONCLUSION: Learning of their child’s diagnosis was highly distressing for parents and was marked with emotional chaos. Parents’ process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.