Doing Everything We Can to Help Our High‐Risk Newborn: A Lifeworld‐Led Study of What Early Risk Assessment for Cerebral Palsy Mean to Parents

Background: /Objectives: Early predictive assessments for CP is recommended for infants with medical risk factors after birth. For parents of children with CP, getting an early diagnosis is important. But most children with risk factors do not develop CP yet are labelled “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 “early predictive assessments for CP” has for them before they know if their child has CP. Methods: Qualitative study using phenomenological, reflective life-world approach. 14 individual in-depth interviews with parents who received different GMA results, 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 your child through the eyes of strangers, just in case. Conclusions: During months following 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 low-risk of CP. But when the GMA result is uncertain, the burden of uncertainty is amplified and prolonged.