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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.
- Neonatology
- Paediatrics
- Qualitative research
- Intensive Care Units, Neonatal
- Follow-Up Studies
Data availability statement
Data are available upon reasonable request.
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Data availability statement
Data are available upon reasonable request.
Footnotes
Contributors CAM: Data curation, formal analysis, resources, software, writing—original draft, writing—review and editing. CG: Conceptualisation, data curation, formal analysis, investigation, methodology, writing—review and editing, and guarantor. CC: Conceptualisation, data curation, formal analysis, funding acquisition, investigation, methodology, writing—review and editing. MS: Conceptualisation, data curation, formal analysis, funding acquisition, investigation, methodology, supervision, writing—review and editing.
Funding Funding for the study was provided by the Women and Infants Research Foundation (WIRF).
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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