Parental experiences of early pulmonary surveillance for children with cystic fibrosis: A research proposal for improved family psychosocial outcomes

Cindy Branch-Smith, Tonia Douglas, Linda Shields, Stephen Stick, John Massie, Julie Ann Pooley

Research output: Contribution to journalArticle

Abstract

The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST-CF) conducts an early surveillance program (ESP)for children with cystic fibrosis (CF). The program has the potential to modify long term health outcomes for children through early detection of lung disease, long before signs and symptoms are apparent. The program is aimed specifically at infants and preschool children (~3 months to 6 years) who undergo annual, detailed and relatively invasive surveillance. Although the ESP has been operating for 10 years, how parents experience their child undergoing early surveillance of this nature,and the psychosocial factors that moderate these experiences, is largely unknown. To date there are no published studies that have examined how parents cope with CF in the context of an ESP. Consequently, care pathways for improved mentalhealth and well-being for families involved with the ESP are incomplete. Therefore, the proposed study intends to explore parental experiences, including coping, related to their child’s involvement in the ESP, and to understand what psychosocial factors are important within the context of the ESP. Understanding parental experiences related to the ESP, how parents cope and identifying the psychosocial factors associated with these experiences is essential to inform CF centres and researchers considering adopting this program, and has the potential to inform intervention strategies that aim to support the family and foster healthy coping mechanisms.
Original languageEnglish
Pages (from-to)1-6
Number of pages6
JournalWorking Papers in the Health Sciences
Volume1
Issue number8
Publication statusPublished - 2014

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