ArticleBMJ paediatrics open2026
'She's surrounded by everybody, but yet seen by nobody.' Parents' experiences and priorities for neonatal developmental follow-up care.
Article in BMJ paediatrics open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundInfants born very preterm (<30 weeks' gestational age) are at increased risk of long-term developmental challenges. Monitoring health and development after discharge home is an essential aspect of neonatal follow-up care; however, there is limited understanding of how parents and carers experience this care with their child or how their own needs are addressed.
methodsThis study aimed to understand and evaluate parents' experiences of neonatal developmental follow-up. Participants were recruited purposively from three diverse National Health Service providers in England. Semi-structured qualitative interviews were conducted, and data were generated and analysed using a Constructivist Grounded Theory approach. Data collection and analysis occurred concurrently, supported by memoing, reflexivity and peer debriefing. Initial and focused coding led to the iterative development of categories.
resultsBetween January 2023 and October 2024, 24 interviews were conducted with parents of infants born before 30 weeks of gestation. Three categories were generated from the data analysis: parent support needs, disintegrated care and healthcare professional (HCP) experience and behaviours.
conclusionParents highlighted that their psychological support needs were unmet during their child's neonatal developmental follow-up, and they found navigating healthcare services after discharge home challenging. Changes to care priorities are required, emphasising the development of integrated systems across service providers and geographical areas, and training for universal healthcare providers.
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