Young adult reflections on life experiences following preterm birth: a cross-sectional descriptive study

Cheryl Anne Mackay; Caitlin Gray; Catherine Campbell; Mary Sharp

doi:10.1136/archdischild-2024-327862

Young adult reflections on life experiences following preterm birth: a cross-sectional descriptive study

Arch Dis Child Fetal Neonatal Ed. 2024 Nov 20:fetalneonatal-2024-327862. doi: 10.1136/archdischild-2024-327862. Online ahead of print.

Authors

Cheryl Anne Mackay^{1

2}, Caitlin Gray³, Catherine Campbell⁴, Mary Sharp^{5

2}

Affiliations

¹ Neonatal Directorate, Government of Western Australia Child and Adolescent Health Service, Perth, Western Australia, Australia Cheryl.Mackay@health.wa.gov.au.
² School of Paediatrics and Child Health, The University of Western Australia - Perth Campus, Perth, Western Australia, Australia.
³ The Kids Research Institute Australia, Nedlands, Western Australia, Australia.
⁴ Neonatology, Government of Western Australia Child and Adolescent Health Service, Perth, Western Australia, Australia.
⁵ Neonatal Directorate, Government of Western Australia Child and Adolescent Health Service, Perth, Western Australia, Australia.

PMID: 39567212
DOI: 10.1136/archdischild-2024-327862

Abstract

Background: Increasingly, preterm-born children are entering adulthood as survival at earlier gestational ages improves. However, there is little understanding of the lived experience in preterm-born adults.

Methods: A cross-sectional descriptive study was conducted including young adults from a regional birth cohort of infants born <33 weeks in Western Australia. Participants provided written reflections of their experiences growing up and included messages for future families experiencing preterm birth. Content analysis was conducted according to SRQR (Standards for Reporting Qualitative Research) guidelines. Ethics approval was granted by the Women and Newborn Health Service Ethics Committee.

Results: Forty-one adults reflected on their life experiences, and 31 included messages for future families. Two predominant themes were (1) neonatal experiences and (2) experiences from childhood and adulthood which were divided into 'positive' and 'negative' subthemes. Participants made 44 references to the neonatal period: 31 (70.5%) 'challenging' including sickness (17, 54.8%), uncertainty (10, 32.3%), family separation (4, 12.9%); and 13 (29.5%) 'positive' including survival (6, 46.2%), support (5, 38.5%), strength (2, 15.4%). Childhood and adulthood was described as 'positive' in 119 (73.5%) references including a good life (41, 33.3%), supportive family (20, 16.3%), success (18, 14.6%), strength (18, 14.6%), gratitude (15, 12.2%), positive self-talk (7, 5.7%); and 'negative' in 43 (26.5%) including health challenges (19, 44.2%), school difficulties (10, 23.3%), family difficulties (9, 20.9%). Messages for future families included what to expect (56, 75.7%) and helpful advice (18, 24.3%).

Conclusion: Our preterm-born young adults predominantly describe positive life experiences of childhood and adulthood balanced with an awareness of particular challenges.

Keywords: Follow-Up Studies; Intensive Care Units, Neonatal; Neonatology; Paediatrics; Qualitative research.