Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis

Douglas, Tonia, Jordan, Brigid, Priddis, Lynn, Anderson, Vicki, Sheehan, Jane, Kane, Robert T, Massie, John, Branch-Smith, Cindy and Shields, Linda (2015) Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis. Journal of Advanced Nursing, 71 7: 1704-1716. doi:10.1111/jan.12621


Author Douglas, Tonia
Jordan, Brigid
Priddis, Lynn
Anderson, Vicki
Sheehan, Jane
Kane, Robert T
Massie, John
Branch-Smith, Cindy
Shields, Linda
Title Protocol for a study of the psychosocial determinants of health in early childhood among children with cystic fibrosis
Journal name Journal of Advanced Nursing   Check publisher's open access policy
ISSN 1365-2648
0309-2402
Publication date 2015-02-10
Year available 2015
Sub-type Article (original research)
DOI 10.1111/jan.12621
Open Access Status Not Open Access
Volume 71
Issue 7
Start page 1704
End page 1716
Total pages 13
Place of publication West Sussex, United Kingdom
Publisher Wiley-Blackwell Publishing Ltd
Formatted abstract
Aims
To investigate the causal associations between family relationships, family functioning, social circumstances and health outcomes in young children with cystic fibrosis.

Background
The anticipated health gains for patients with cystic fibrosis, promised by early diagnosis through newborn screening, have yet to be fully realized, despite advances in cystic fibrosis health care with aggressive management in multidisciplinary clinics and the development of specific medications. Adverse psychosocial functioning may underpin the current lack of progress as it is well recognized that compromised early parent–child attachment relationship experiences and adverse social circumstances have negative impacts on lifelong health status and health resource use, even in healthy children.

Design
A cross-sectional (initial) and longitudinal (progressive), multicentre study of children aged 3 months–6 years with cystic fibrosis, who have been diagnosed by newborn screening.

Methods
Questionnaire and observational measures of parent psychosocial functioning, parenting and parent–child attachment and social markers; and including clinical outcomes of regular health surveillance with clinical, lung imaging (computerized tomography) and bronchoalveolar lavage for airway microbiology and inflammation.

Conclusion
This will be the first study to investigate the causal effect of psychosocial functioning, parenting and attachment on physical health outcome measures in children with cystic fibrosis.
Keyword Cohort study
Cystic fibrosis
Longitudinal study
New born screening
Nursing
Protocol
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ

 
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