Living and managing with the long-term implications of neonatal chronic lung disease: The experiences and perspectives of children and their parents

Abstract

ObjectiveThe purpose of the study was to investigate children's perspectives of living with chronic lung disease (CLD) and their parents' long-term experiences of caring for them. BackgroundCLD caused by prematurity of birth is associated with continuing respiratory, neuro-developmental and psychosocial issues. Methods10 children (6–15 years old) with CLD and 12 parents were involved in semi-structured qualitative interviews. Data were analyzed using thematic analysis. ResultsCLD was described as ‘getting easier over time’ and that you ‘learnt to live with it.’ Expertise was acquired in controlling symptoms and recognizing the onset of illness, despite expressed uncertainty of the nature of the condition. Children experienced difficulties engaging in peer activities and encountered cases of teasing and isolation at school. ConclusionCLD was reported as becoming easier over time to live with. Despite this, children experienced challenges engaging in peer activities and families described difficulties interacting with health and education services.