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

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. (PsycInfo Database Record (c) 2020 APA, all rights reserved)Lady Cilento Children’s Hospital, Brisbane, QLD, Australia. Institutional Authors: AREST-CF. Other Publishers: Blackwell Publishing. Release Date: 20150831. Correction Date: 20200611. Publication Type: Journal (0100), Peer Reviewed Journal (0110). Format Covered: Electronic. Document Type: Journal Article. Language: EnglishMajor Descriptor: Cystic Fibrosis; Early Childhood Development; Health; Psychosocial Factors. Classification: Physical & Somatoform & Psychogenic Disorders (3290). Population: Human (10); Inpatient (50). Location: Australia. Age Group: Childhood (birth-12 yrs) (100); Infancy (2-23 mo) (140); Preschool Age (2-5 yrs) (160); School Age (6-12 yrs) (180). Tests & Measures: Support Functions Scale; Depression Anxiety Stress Scale Parenting Stress Index; Brief COPE; Parental Experience of Child Illness Measure; Parent Development Interview-Revised Short Version; Ages and Stages Questionnaire:Social–Emotional Questionnaire; Short Temperament Scale for Children; Emotional Availability Scales; Parent Development Interview; Self-Report Parent Questionnaires; Child Behavior Checklist; Dyadic Adjustment Scale DOI: 10.1037/t02175-000; McMaster Family Assessment Device DOI: 10.1037/t06314-000; Alarm Distress Baby Scale DOI: 10.1037/t20859-000; Adherence Questionnaire DOI: 10.1037/t44140-000; Family Support Scale; Parent Behavior Checklist DOI: 10.1037/t02428-000; Impact on Family Scale DOI: 10.1037/t06338-000; Parenting Stress Index DOI: 10.1037/t02445-000. Methodology: Empirical Study; Longitudinal Study; Interview; Quantitative Study. References Available: Y. Page Count: 13. Issue Publication Date: Jul, 2015. Publication History: Accepted Date: Dec 3, 2014. Copyright Statement: John Wiley & Sons Ltd. 2015.Sponsor: National Health and Medical Research Council. Grant: 513730. Recipients: No recipient indicated <br />Sponsor: Department of Health of Western Australia, Australia. Date: from 2011. Recipients: No recipient indicated <br />