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

Lucy Bray; Nigel J Shaw; Jill Snodin

doi:10.1016/j.hrtlng.2015.08.002

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

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

Authors

Lucy Bray¹, Nigel J Shaw², Jill Snodin³

Affiliations

¹ 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: [email protected].
² 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.
³ Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, West Lancashire, UK.

PMID: 26383100
DOI: 10.1016/j.hrtlng.2015.08.002

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.

Keywords: Child; Chronic lung disease; Experiences; Long-term; Parents; Qualitative research.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adaptation, Psychological*
Adolescent
Attitude to Health*
Child
Chronic Disease
Family / psychology*
Female
Follow-Up Studies
Humans
Lung Diseases / psychology
Lung Diseases / rehabilitation*
Male
Parent-Child Relations*
Parents / psychology*
Time Factors