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Jason Robert Guertin,1– 3 Mahée Gilbert-Ouimet,1,4 Michèle Dugas,5 Valérie Carnovale,5 Laura Jalbert,5 Olha Svyntozelska,2,5 Juliette Demers,5 Léonie Matteau,2,4 Frédéric Bergeron,6 Annie LeBlanc2,5 1Centre de recherche du Centre de recherche du CHU de Québec-Université Laval, Quebec City, Quebec, Canada; 2Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada; 3Centre de recherche en organogénèse expérimentale de l’Université Laval/LOEX, Quebec City, Quebec, Canada; 4Department of Health Sciences, Université du Québec À Rimouski, Levis, Quebec, Canada; 5VITAM Research Center on Sustainable Health, Quebec Integrated University Health and Social Services Center, Quebec City, Quebec, Canada; 6Bibliothèque-Direction des services-conseils, Université Laval, Quebec City, Quebec, CanadaCorrespondence: Jason Robert Guertin, Centre de recherche du CHU de Québec – Université Laval, Axe Santé des Populations et Pratiques Optimales en Santé, Hôpital du Saint-Sacrement, 1050 chemin Sainte-Foy, local J1-11, Quebec City, Québec, G1S 4L8, Canada, Tel +1 418-682-7511, ext 82516, Email jason.guertin@fmed.ulaval.caBackground: 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.Keywords: scoping review, caregivers, financial burden, sex and gender considerations, methods |
