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

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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: 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
Original languageEnglish
Pages (from-to)512-16
JournalHeart & Lung: The Journal of Acute and Critical Care
Volume44
Issue number6
Early online date14 Sep 2015
DOIs
Publication statusE-pub ahead of print - 14 Sep 2015

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Lung Diseases
Chronic Disease
Parents
Uncertainty
Health Services
Qualitative Research
Negotiating
Health Education
Parturition
Interviews

Cite this

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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: 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",
author = "Lucy Bray and Ben Shaw and Jill Snodin",
year = "2015",
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doi = "doi:10.1016/j.hrtlng.2015.08.002",
language = "English",
volume = "44",
pages = "512--16",
journal = "Heart and Lung: Journal of Acute and Critical Care",
issn = "0147-9563",
publisher = "Elsevier",
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TY - JOUR

T1 - Living and Managing with the long-term implications of neonatal chronic lung disease: The experiences and perspectives of children and their parents

AU - Bray, Lucy

AU - Shaw, Ben

AU - Snodin, Jill

PY - 2015/9/14

Y1 - 2015/9/14

N2 - 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

AB - 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

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DO - doi:10.1016/j.hrtlng.2015.08.002

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JO - Heart and Lung: Journal of Acute and Critical Care

JF - Heart and Lung: Journal of Acute and Critical Care

SN - 0147-9563

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ER -