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

Objective: The 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. Background: CLD caused by prematurity of birth is associated with continuing respiratory, neuro-developmental and psychosocial issues. Methods: 12 parents and 10 children (aged 6-15 years of age) with CLD were involved in semi-structured qualitative interviews. Data were recorded, transcribed and analysed using thematic analysis. Results: CLD was described as ‘getting easier over time’ and that you ‘learnt to live with it’; skills and expertise were acquired in controlling symptoms, recognising the early onset of illness and negotiating health services. Children experienced difficulties and uncertainty in engaging in peer activities and dealt with cases of teasing and isolation at school. Children and parents discussed uncertainty and a poor understanding of the nature of the condition. Conclusion: CLD was reported by children and their parents as becoming easier over time to live with. Despite this, children continued to experience challenges in engaging fully in peer activities and families described difficulties in interacting effectively with health and education services. Key words Chronic Lung Disease, child, parents, experiences, long-term, qualitative research