BishtRef
Articles Journals Publishers Authors Subjects Most Cited New Papers Year Stats Open Access
journal article Open Access Sep 22, 2023

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

Alice Fortune ORCID Elizabeth Perkins Fauzia Paize Balamurugan Palanisami ORCID Melissa Gladstone ORCID
Child: Care, Health and Development Vol. 50 No. 1 · Wiley
View at Publisher Save 10.1111/cch.13168
Abstract
AbstractBackgroundEarly 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.
Topics

No keywords indexed for this article. Browse by subject →

References
51
[1]
Accardo C. (2008)
[3]
A longitudinal study of maternal attachment and infant developmental outcomes

Jeanne L. Alhusen, Matthew J. Hayat, Deborah Gross

Archives of Women's Mental Health 10.1007/s00737-013-0357-8
[31]
Cerebral Palsy—Don't Delay

Sarah McIntyre, Catherine Morgan, Karen Walker et al.

Developmental Disabilities Research Reviews 10.1002/ddrr.1106
[33]
NVivo Q (2018)
[39]
Rafferty K. A.(2015). editor“Everything Remains Uncertain“: Theorizing Parents' Communication About Uncertainty Hope and Hopelessness While Managing Complex Pediatric Chronic Conditions.
[40]
Richardson A.(2018).Identify Intervene Impact An Australian model of best practice for cerebral palsy[cited 2021 07/04/2021]. Available from:https://www.wcmt.org.uk/sites/default/files/report‐documents/Richardson%20A%20Report%202018%20Final.pdf
[41]
Ritchie J. (2013)
[46]
Taylor F.(2020).Cerebral palsy: hope through research. United States: National Institute of Neurological Disorders and Stroke[updated 30/03/2020. Available from:https://www.ninds.nih.gov/Disorders/Patient‐Caregiver‐Education/Hope‐Through‐Research/Cerebral‐Palsy‐Hope‐Through‐Research#3104_15

Showing 50 of 51 references

Metrics
11
Citations
51
References
Details
Published
Sep 22, 2023
Vol/Issue
50(1)
License
View
Authors
A
Alice Fortune

Department Women and Children's Health, Institute of Life Course and Medical Sciences University of Liverpool Liverpool UK

E
Elizabeth Perkins

Department of Primary Care and Mental Health Institute of Population Health Liverpool UK

F
Fauzia Paize

Liverpool Women's NHS Foundation Trust Liverpool UK

B
Balamurugan Palanisami

Liverpool Women's NHS Foundation Trust Liverpool UK

M
Melissa Gladstone

Department Women and Children's Health, Institute of Life Course and Medical Sciences University of Liverpool Liverpool UK

Cite This Article
Alice Fortune, Elizabeth Perkins, Fauzia Paize, et al. (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). https://doi.org/10.1111/cch.13168
Related

You May Also Like

The relationship between maternal self‐efficacy and parenting practices: implications for parent training

M. R. Sanders, M. L. Woolley · 2005

372 citations

Screen time and childhood overweight/obesity: A systematic review and meta‐analysis

Kehong Fang, Min Mu · 2019

315 citations

A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease

C. G. McCusker, N. N. Doherty · 2009

123 citations

Family‐centred care in early intervention: A systematic review of the processes and outcomes of family‐centred care and impacting factors

Elaine McCarthy, Suzanne Guerin · 2021

109 citations

Youth in transition: care, health and development

J. W. Gorter, D. Stewart · 2011

84 citations