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

Tonia Douglas; Brigid Jordan; Lynn Priddis; Vicki Anderson; Jane Sheehan; Robert T Kane; John Massie; Cindy Branch-Smith; Linda Shields; AREST-CF

doi:10.1111/jan.12621

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

J Adv Nurs. 2015 Jul;71(7):1704-16. doi: 10.1111/jan.12621. Epub 2015 Feb 10.

Authors

Tonia Douglas^{1

2}, Brigid Jordan^{3

4

5}, Lynn Priddis⁶, Vicki Anderson^{7

8}, Jane Sheehan⁹, Robert T Kane¹⁰, John Massie^{5

11

12}, Cindy Branch-Smith^{13

14}, Linda Shields^{15

16}; AREST-CF

Affiliations

¹ Lady Cilento Children's Hospital, Brisbane, Queensland, Australia.
² Curtin University, Perth, Western Australia, Australia.
³ Royal Children's Hospital Melbourne, Victoria, Australia.
⁴ Clinical Sciences, Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
⁵ Department of Paediatrics, University of Melbourne, Victoria, Australia.
⁶ School of Psychology and Social Science, Edith Cowan University, Perth, Western Australia, Australia.
⁷ Royal Children's Hospital Mental Health, Melbourne, Victoria, Australia.
⁸ Psychological Sciences & Paediatrics, University of Melbourne, Victoria, Australia.
⁹ Department of Respiratory Medicine, Murdoch Children's Research Institute, The Royal Children's Hospital, Melbourne, Victoria, Australia.
¹⁰ School of Psychology and Speech Pathology, Curtin University, Perth, Western Australia, Australia.
¹¹ Department of Respiratory Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia.
¹² Infection, Immunity and Environment, Murdoch Children's Research Institute, Melbourne, Victoria, Australia.
¹³ Edith Cowan University, Perth, Western Australia, Australia.
¹⁴ Telethon Kids Institute, University of Western Australia, Perth, Western Australia, Australia.
¹⁵ Tropical Health Research Unit and College of Healthcare Sciences, Townsville Hospital and Health Service/James Cook University, Queensland, Australia.
¹⁶ Medical School, The University of Queensland, Townsville, Queensland, Australia.

PMID: 25678214
DOI: 10.1111/jan.12621

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.

Keywords: cohort study; cystic fibrosis; longitudinal study; new born screening; nursing; protocol.

Publication types

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

MeSH terms

Child
Child, Preschool
Cystic Fibrosis / physiopathology*
Health Status*
Humans
Infant