Date of Award
Doctor of Philosophy in Psychology
School of Arts and Humanities
Associate Professor Julie Ann Pooley
Professor Linda Shields
Professor Stephen Stick
Doctor Tonia Douglas
Scientific and technological advances over the past few decades have contributed to an exponential increase in life expectancy for infants born with cystic fibrosis (CF), which can cause fatal lung disease. There has been a paradigmatic shift from reactive treatment towards early disease detection and aggressive intervention of paediatric CF. Previous research has investigated parents’ experiences of the diagnosis phase and later life stages such as adolescence and transition to adulthood. Less is understood about the experience of parenting infants and young children with CF, and no research addresses this during early surveillance for CF lung disease. Early surveillance is rapidly emerging as the likely framework for future therapeutic intervention trials in young children, nationally and internationally. Thus, understanding parents’ mental health is essential to providing support to families during their child’s intensive, early treatment.
This research aimed to explore how parents construct their lived experiences of parenting and how they attribute meaning to these experiences. Particular attention was given to coping strategies, informed by a salutogenic model of protective factors that may contribute to family adaptation and resilience. A qualitative methodology, guided by theoretical underpinnings of phenomenology and constructivism was used to explore parents’ experiences. Semi-structured interviews were conducted with 67 parents (46 mothers and 21 fathers aged between 23 and 52 years) across sites where early surveillance for CF lung disease operates in Australia. A thematic analytic approach was used to analyse the data.
Data revealed that whilst parents described adverse psychological consequences of their child’s participation in early surveillance, it was also evident that beneficial outcomes eclipsed adversities. Five major themes represent the emergent structure of parents’ lived experience: Redefined Expectations and Reimagined Identity, Redefined Reality; Understanding the Unknown and Understanding Uncertainty; Good Days and Bad Days, Fluctuation between Positive and Negative Outlook On Life; Early Surveillance is a Significant Event; And Early Surveillance is in the Best Interest of my Child. Collectively, these highlight that only attending to adverse experiences and outcomes would be to overlook significant beneficial psychological experiences and outcomes of this unique parenting experience. Pathways that enable adaptation to paediatric chronic disease in the context of early surveillance were also identified using a resiliency framework of family adjustment and adaption. These findings contribute to current conceptualisations of parenting children with chronic conditions undergoing modern interventions that aim to delay disease. This research may also inform policy-making and models of best paediatric clinical practice, particularly those embracing a biopsychosocial model of care that promotes parents’ mental health, as well as family resilience and adaptation. The importance of these findings underscores the need for further research to expand our understanding of the parenting experience in the unique context of early surveillance.
Branch-Smith, C. (2016). A resiliency perspective of the lived experience of parenting infants and young children with cystic fibrosis in the context of early lung disease surveillance. https://ro.ecu.edu.au/theses/1805