Parent and caregiver journeys through the process of early neurodevelopmental follow-up for their infants – a qualitative account

Fortune, Alice
(2021) Parent and caregiver journeys through the process of early neurodevelopmental follow-up for their infants – a qualitative account. Master of Philosophy thesis, University of Liverpool.

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Introduction: Early diagnosis of cerebral palsy (CP) is possible by five months corrected age for “at- risk” infants using the Hammersmith Infant Neurological Examination (HINE), Prechtl’s General Movements Assessment (GMA) and MRI. As use of these tools increases, implementation issues, including how to provide appropriate information to parents, are emerging. During this uncertain and stressful time for parents, providing appropriate information and support is essential, particularly as an infant’s associated developmental delay may not yet be visible to parents. Previous qualitative research into this topic is very limited and none exists within the UK. Aims: To explore parents’ views and experiences regarding the process of early neurodevelopmental follow-up for their high-risk infants in Liverpool, to provide healthcare professionals with a means of tailoring their service to the needs of these parents. Methods: I conducted thirteen in-depth qualitative interviews with eight parents of high-risk infants (six mothers and two fathers) eligible for a new physiotherapist-led follow-up clinic at the Liverpool Women’s Hospital (LWH). Interviews used a pre-piloted topic guide and took place before and after the clinic to gain an in depth understanding of parents’ perspectives during this time period. Interviews were audio-recorded, transcribed verbatim and analysed using inductive coding and thematic analysis, using the framework method. Results: Seven main themes were identified. (1) Attempting to manage uncertainty was the overwhelming theme found within parents’ accounts. Other themes found were: (2) Taking priority, (3) Trusting professionals, (4) Independence in the parent role, (5) Feeling understood, (6) Patterns of care and (7) Individuality. Parents’ uncertainty was related to their baby making progress, being on track and their future. A clear point of contact, regular follow-up and adequate preparation for and timing of information were vital. When uncertainty is poorly managed, parents’ wellbeing suffers, and they struggle to cope. Individual parent perspectives and babies’ developmental trajectories differ, creating a need for tailored information. Conclusion: From interviews it is clear that many parents’ understanding of physiotherapy and neurodevelopmental assessments is limited at this stage. This study suggests several changes to the current early neurodevelopmental follow-up process, which could improve both parents’ experiences and clinic attendance rates.

Item Type: Thesis (Master of Philosophy)
Divisions: Faculty of Health and Life Sciences
Depositing User: Symplectic Admin
Date Deposited: 09 Feb 2022 15:09
Last Modified: 18 Jan 2023 21:25
DOI: 10.17638/03142678