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). pp. 1704-1716.

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To investigate the causal associations between family relationships, family functioning, social circumstances and health outcomes in young children with cystic fibrosis.


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.


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.


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.


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.

Item ID: 36797
Item Type: Article (Research - C1)
ISSN: 1365-2648
Keywords: cohort study; cystic fibrosis; longitudinal study; new born screening; nursing; protocol
Funders: National Health and Medical Research Council (NHMRC), Department of Health of Western Australia
Projects and Grants: NHMRC 513730
Date Deposited: 18 Jun 2015 02:59
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1110 Nursing > 111003 Clinical Nursing: Secondary (Acute Care) @ 50%
11 MEDICAL AND HEALTH SCIENCES > 1114 Paediatrics and Reproductive Medicine > 111403 Paediatrics @ 50%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920210 Nursing @ 50%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 50%
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