Methods used to account for caregivers’ sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review

Abstract

Background Interest in the financial burden of informal caregivers has been growing. Unfortunately, it remains unclear which method(s) should be used when quantifying this burden. Purpose We conducted a scoping review aimed at identifying which methods have been used to conduct such work and quantified their performance. We were also interested in examining how sex and gender considerations were considered within selected studies. Data Sources Using a standardized approach, we identified studies published between 2012 and 2022 that aimed to document the financial burden of caregivers to child and adolescent patients. Our search strategy was applied to the MEDLINE, Embase, CINHAL, and Academic Search Premier databases. Study Selection Manuscript selection was performed by pairs of reviewers. Data Extraction Data extraction was performed by one reviewer with a second reviewer performing quality control. Results were reported using a narrative approach. Data Synthesis We identified 9801 unique citations, of which 200 were included in our review. Selected studies covered various disease area (eg, infection/parasitic diseases [n = 31, 16%]) and included quantitative (n = 180, 90%), qualitative (n = 4, 2%) and mixed study designs (n = 16, 8%). Most studies (n = 182, 91%) used questionnaires/surveys, either alone or in combination with other methods, to assess caregivers’ financial burden. Less than half (n = 93, 47%) of studies reported on caregivers’ sex and none reported on their gender. Conclusion We conducted an unrestricted review of published studies examining caregiver’s financial burden which allowed us to identify general methodological trends observed in this literature. We believe this work may help improve future studies focusing on this important issue.