title: Living and managing with the long-term implications of neonatal chronic lung disease: The experiences and perspectives of children and their parents.
abstract: 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
  10 children (6-15 years old) with CLD and 12 parents were involved in semi-structured qualitative interviews. Data were analyzed using thematic analysis.
  
  
  RESULTS
  CLD 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.
  
  
  CONCLUSIONS
  CLD 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.
authors.affiliation: Evidence-based Practice Research Centre, Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, West Lancashire L39 0HL, UK; Children's Nursing Research Unit, Alder Hey Children's NHS Foundation Trust, UK. Electronic address: brayl@edgehill.ac.uk.
authors.forename: Lucy
authors.initials: L
authors.lastname: Bray
authors.affiliation: Evidence-based Practice Research Centre, Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, West Lancashire L39 0HL, UK; Neonatal Unit, Liverpool Women's Hospital, Liverpool, UK.
authors.forename: Nigel J
authors.initials: NJ
authors.lastname: Shaw
authors.affiliation: Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, West Lancashire, UK.
authors.forename: Jill
authors.initials: J
authors.lastname: Snodin
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002908:Chronic Disease; D005190:Family / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008171:Lung Diseases / Q000523:psychology / Q000534:rehabilitation*; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D013997:Time Factors
keywords: Child; Chronic lung disease; Experiences; Long-term; Parents; Qualitative research