Managing mothers' and fathers' uncertainty during their journey through early neurodevelopmental follow‐up for their high‐risk infants—A qualitative account

Abstract

BackgroundEarly diagnosis of cerebral palsy is possible by 5 months corrected age for ‘at‐risk’ infants, using diagnostic tools such as the Hammersmith Infant Neurological Examination (HINE), Prechtl's General Movements Assessment (GMA) and magnetic resonance imaging (MRI). This is an uncertain and stressful time for parents where provision of appropriate information and support is essential.AimTo explore parents' views and experiences in relation to the new early neurodevelopmental follow‐up of ‘at‐risk’ infants.MethodsThirteen in‐depth one‐to‐one qualitative interviews were conducted by the primary researcher, with eight parents (six mothers and two fathers) of ‘at‐risk’ infants eligible for a follow‐up clinic where the GMA and HINE were performed at 12‐week corrected age. Interviews used a pre‐piloted topic guide and took place before and after the clinic. Interviews were audio‐recorded, transcribed verbatim and analysed using inductive coding and thematic analysis using the framework approach.FindingsSeven themes were identified: (1) attempting to manage uncertainty, (2) taking priority, (3) trusting professionals, (4) independence in the parent role, (5) feeling understood, (6) patterns of care and (7) individuality. Parents reported experiencing uncertainty about their current situation and future. Adequate preparation for and timing of information are vital. When uncertainty is poorly managed, parents' wellbeing suffers. Individual parents' perspectives and infants' developmental trajectories differ, and information should be tailored specifically for this.ConclusionA parent's understanding of the journey through neurodevelopmental care for their high risk infants is initially very limited. Implementing a counselling service for parents to access psychological support and digital reminder system for clinic appointments, as well as providing more tailored information through trusted professionals, could all improve future parents' experiences.

‘We did everything by phone’: a qualitative study of mothers' experience of smartphone-aided screening of cerebral palsy in Kathmandu, Nepal

“…The period between sending videos and receiving the results should be minimized to reduce parental stress, and a possibility for direct face-to-face consultation should be provided for all parents. Similar desire for face-to-face assessment was also voiced by mothers participating in neurodevelopmental follow-up of their infants in England [ 32 ]. An opportunity to ask questions about their child’s health and development improves parental trust in the screening results, and provides an opportunity to screen for other adverse neurodevelopmental outcomes than CP for which GMA has lower sensitivity for [ 33 ].…”