Family caregivers of children with cystic fibrosis: supportive care needs - scoping review.

Background: Cystic fibrosis (CF) in children requires complex and time-consuming daily care, presenting significant challenges for families and caregivers. Family caregivers caring for children with CF report diverse and complex needs.

Objective: This review aimed to identify the supportive care needs of family caregivers of children with CF.

Review Methods: This scoping review was conducted to identify the supportive care needs of family caregivers for children with CF using the methodology proposed by Arksey and O'Malley. The Preferred Reporting Items for Systematic review and Meta-Analysis extension for Scoping Reviews checklist was used as a guide. The inclusion criteria included full-text quantitative and qualitative English articles from January 2000 to Apr 2024.

Data Sources: Structured searches were conducted using Magiran, MEDLINE (PubMed), Scopus, ScienceDirect, SID (Science Information Database), Web of Science and Google Scholar search engines.

Findings: A search across six databases, including Magiran (96), PubMed (680), Scopus (828), ScienceDirect (972), SID (Science Information Database) (47) and Web of Science (409), identified 3032 records. An additional 1185 related articles were found through a manual search of the reference lists and the Google Scholar search engine bringing the total to 4217. Out of 4217 initial articles, 21 eligible articles were reviewed. The findings from this study indicated that family caregivers of children with CF face multidimensional needs requiring comprehensive attention and support including educational/informational, psychological/emotional, spiritual, social, family-related, health and child development and growth needs.

Conclusion: Addressing the needs of family caregivers of children with CF requires a multidimensional approach including multidisciplinary team support across various domains.