Clin Pediatr | Volume 3, Issue 1 | Research Article | Open Access

‘You’ve Just Got to Crack on with it’: A Qualitative Study of Parents’ Perceptions One Year after Very Preterm Birth

Harvey ME1#, Redshaw ME2*# and Edwards AD3#

1Education and Life Sciences, Birmingham City University, UK 2National Perinatal Epidemiology Unit, University of Oxford, UK 3Department of Perinatal Imaging and Health, Division of Imaging and Biomedical Engineering, King’s College, UK #On behalf of the ePrime Research Group

*Correspondance to: Maggie Redshaw 

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Background: Qualitative studies have explored parents’ experiences of having a preterm baby; however these commonly focused on parent’s recent experiences of neonatal unit care and the early months immediately following discharge home. Objectives: To describe parents’ experiences and perceptions of their very preterm child’s development, adaptation to family life during the first year and the impact of early informationgiving about their child’s prognosis. Methods, setting, participant: This study was part of a program of research that included a trial and follow-up of babies born before 33 weeks gestation and their parents. Using purposive sampling methods, telephone interviews were conducted with 30 parents one year after preterm birth. A topic guide ensured a consistent approach. With parental consent, the interviews were audio-recorded enabling verbatim transcription. Qualitative analysis using NVivo 10 identified emerging themes and associated sub-themes. Results: Two over-arching themes were identified; ‘facing the future’ which focused on current perceptions of the prognostic information parents had received early on, with three key themes: ‘anticipating the scan result’, ‘hearing the prognoses’ and ‘relief and concern’. The second overarching theme ‘looking back from now’ focused on parental perceptions one year on, with four key themes: ‘Being in the neonatal unit’, ‘how it affected us’, ‘Needing information and support’, and ‘The child we have now’. Conclusion: The one year interviews provided insights about the impact of preterm birth and the ways in which families of infants born at 26 to 32 weeks gestation adjust, cope with a child’s developmental and specific needs and in the process, adapt to the baby they now have. They also show just how early prognostic information-giving can have a lasting and profound effect on parents.


Parents; Preterm; MRI; Ultrasound; Developmental prognosis; Information-giving


Harvey ME, Redshaw ME, Edwards AD. ‘You’ve Just Got to Crack on with it’: A Qualitative Study of Parents’ Perceptions One Year after Very Preterm Birth. Clin Pediatri. 2020;3:1020..

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