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

Fortune, Alice ORCID: 0000-0002-0718-4231, Perkins, Elizabeth ORCID: 0000-0002-0213-8105, Paize, Fauzia, Palanisami, Balamurugan and Gladstone, Melissa ORCID: 0000-0002-2579-9301 (2023) Managing mothers' and fathers' uncertainty during their journey through early neurodevelopmental follow‐up for their high‐risk infants—A qualitative account. Child: Care, Health and Development, 50 (1). e13168-.

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Official URL: http://dx.doi.org/10.1111/cch.13168

Abstract

<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>Early 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.</jats:p></jats:sec><jats:sec><jats:title>Aim</jats:title><jats:p>To explore parents' views and experiences in relation to the new early neurodevelopmental follow‐up of ‘at‐risk’ infants.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>Thirteen 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.</jats:p></jats:sec><jats:sec><jats:title>Findings</jats:title><jats:p>Seven 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.</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>A 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.</jats:p></jats:sec>

Item Type:	Article
Uncontrolled Keywords:	cerebral palsy, general movements assessment, Hammersmith Infant Neurological Examination, high-risk, parents, qualitative
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences
Depositing User:	Symplectic Admin
Date Deposited:	29 Sep 2023 08:04
Last Modified:	02 Feb 2024 11:58
DOI:	10.1111/cch.13168
Open Access URL:	https://onlinelibrary.wiley.com/doi/10.1111/cch.13...
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3173177