应对新生儿慢性肺病的长期影响并与之共处：儿童及其父母的经历与观点。

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

作者信息

Bray Lucy, Shaw Nigel J, Snodin Jill

机构信息

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.

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.

出版信息

Heart Lung. 2015 Nov-Dec;44(6):512-6. doi: 10.1016/j.hrtlng.2015.08.002. Epub 2015 Sep 14.

DOI:10.1016/j.hrtlng.2015.08.002

PMID:26383100

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.

CONCLUSION

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.

摘要