Bray Lucy, Shaw Nigel J, Snodin Jill
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.
Heart Lung. 2015 Nov-Dec;44(6):512-6. doi: 10.1016/j.hrtlng.2015.08.002. Epub 2015 Sep 14.
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.
CLD caused by prematurity of birth is associated with continuing respiratory, neuro-developmental and psychosocial issues.
10 children (6-15 years old) with CLD and 12 parents were involved in semi-structured qualitative interviews. Data were analyzed using thematic analysis.
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.
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.
本研究旨在调查儿童对患慢性肺病（CLD）生活的看法以及他们父母长期照顾他们的经历。
早产引起的CLD与持续的呼吸、神经发育和心理社会问题相关。
10名患有CLD的儿童（6 - 15岁）和12名家长参与了半结构化定性访谈。采用主题分析法对数据进行分析。
CLD被描述为“随着时间推移变得更容易应对”，而且人们“学会了与之共存”。尽管对病情的性质存在不确定性，但在控制症状和识别疾病发作方面获得了专业知识。儿童在参与同伴活动时遇到困难，在学校遭遇被取笑和孤立的情况。
据报告，CLD随着时间推移生活起来变得更容易。尽管如此，儿童在参与同伴活动时面临挑战，家庭在与卫生和教育服务机构互动方面也存在困难。
