Doing Everything We Can to Help Our High-Risk Newborns: A Qualitative, Lifeworld-Led Study of What Early Risk Assessment for Cerebral Palsy Means to Parents

Abstract

Background/Objectives: Early predictive assessments for CP are recommended for infants with medical risk factors after birth. For parents of children with CP, receiving an early diagnosis is important. But most children with risk factors who have not yet developed CP are labeled "high-risk infants" and repeatedly assessed for abnormal signs. We aim to investigate the experience of parents of high-risk infants and describe the meaning that "early predictive assessments for CP" has for them before they know whether their children have CP. Methods: This was a qualitative study conducted using a phenomenological, reflective lifeworld approach. Fourteen individual in-depth interviews were conducted with parents who received different GMA results to learn about their experiences involving early predictive assessments. The interviews were analyzed for meaning. Results: Early predictive assessments take place over time while parents process the traumatic experience of becoming parents to an infant at risk. "Early predictive assessment" is perceived as any examination or assessment intended to unveil signs of illness or disability. The child's future well-being and fulfillment, and the demands of parenthood, are at stake. Essential meaning structures are (1) on a spectrum from death to insignificancies, (2) living with uncertainty of what the parental role will entail, and (3) seeing one's own child through the eyes of strangers, just in case. Conclusions: For months following the birth of a high-risk child, parents experience uncertainty and worrying, affecting the parent-infant relationship. Predictive assessments reduce their sense of alarm when the GMA result indicates a low risk of CP. But when the GMA result is uncertain, the burden of uncertainty is amplified and prolonged.

Keywords: cerebral palsy; early predictive assessments; general movement assessment; parental perspectives; phenomenology; qualitative research.