In:
Archives of Disease in Childhood - Fetal and Neonatal Edition, BMJ
Abstract:
Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. Methods Over 1 year, parents of children born 〈 29 weeks’ gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. Results Among parents (n=248, 98% participation rate), most (74%) reported that their child’s prematurity had both positive and negative impacts on their life or their family’s life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child’s future (18%). Conclusion Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.
Type of Medium:
Online Resource
ISSN:
1359-2998
,
1468-2052
DOI:
10.1136/archdischild-2022-325011
Language:
English
Publisher:
BMJ
Publication Date:
2023
detail.hit.zdb_id:
2188490-0
