This study aimed to explore parent experiences of early screening of their infants for cerebral palsy, in an Australian context.
This qualitative description study used semi-structured interviews with parents (n=24) of high-risk infants who either had CP (n=5), were high risk for CP (n=10), or did not have CP (n=11) at 2 years, and had completed early screening for CP. Purposive maximum variation sampling was used to facilitate diversity across a) geographical location in Australia, b) socioeconomic status, c) their child’s diagnosis at 2 (CP, high risk of CP, no CP) and d) parent reported satisfaction with screening. Data were analysed using reflexive thematic analysis.
Three themes were developed to describe parents’ early screening experiences. 1) A new, destabilised, world explores how parents are thrown into an uncertain and unstable parenting journey with the birth of an unwell infant. Subthemes a) diverging paths of parenting and b) watching through a deficit lens describe how parents’ early experiences are perceived as ‘different’ to their expectations of parenthood, while c) being left in limbo explores the central role uncertainty plays in parents’ sense of instability. 2) Early is best… but not easy explores parents desire for early provision of information and support (including screening), even when this was experienced as emotionally challenging. The subtheme a) wanting to know, but knowing is hard describes this duality and tension. The final theme 3) Trying to reach stable ground describes the resources and actions parents use to move forward and reach a place of stability and control. The subthemes illustrate these: a) trusting relationships as scaffolding explores the essential role of supportive healthcare professionals while b) seeking control to pave the way forward and c) hunger for knowledge describe the strategies and actions parents take to support their child.
Overall, parents expressed a strong desire for early knowledge and developmental support for their child, including early screening for CP. Future research may seek to explore experiences of male carers, and of parents who choose to not undertake early screening for their infants.
A nuanced understanding of the experiences and perspectives of parents may enhance implementation and translation of early screening guidelines, so they are more acceptable for parents and families. Early screening was most valued when it was clearly associated with practical supports, such as early intervention and access to funding. Of clinical importance, empathetic healthcare professionals who provide clear and honest information and support for parents to be actively involved in their child’s care, are a key support for parents throughout early CP screening.
qualitative research
parent experiences
