Intensity of care and perceived burden among informal caregivers to persons with chronic medical conditions: a systematic review and meta-analysis. Issue 21 (9th October 2022)

• Record Type: Journal Article
• Authors: Carboni-Jiménez, Andrea; Rice, Danielle B.; Levis, Brooke; Cañedo-Ayala, Mara; Imran, Mahrukh; Chiovitti, Matthew; Benedetti, Andrea; Thombs, Brett D.
• Is Part Of: Disability and rehabilitation. Volume 44:Issue 21(2022)
• Page Start: 6230
• Page End: 6246
• Publication Date: 2022-10-09
• Subjects: Systematic review -- meta-analysis -- chronic disease -- informal caregivers -- perceived burden; People with disabilities -- Periodicals; Rehabilitation -- Periodicals; 617.03
• DOI: 10.1080/09638288.2021.1966675
• Languages: English
• ISSNs: 0963-8288

Abstract

Abstract: Purpose: Informal caregivers provide ongoing assistance to a loved one with a health condition. No studies have compared caregiving intensity and perception of burden across chronic medical conditions. Materials and methods: Databases were searched from inception through 11 September 2020 to identify studies that included the Level of Care Index or the Zarit Burden Inventory (ZBI) among caregivers for people with chronic diseases. Pooled mean ZBI scores and 95% confidence intervals by medical condition were calculated using a random effects model and heterogeneity with I 2 . Results: Ninety-seven included articles reported on 98 unique samples across 21 chronic diseases. No study used the Level of Care Index. Among 12 disease groups with more than one study, heterogeneity was too high ( I 2 range: 0–99.6%, ≥76.5% in 11 groups) to confidently estimate burden. The percent of studies rated high risk of bias ranged from 0% to 98%, but all external validity items were rated as high-risk in >50% of studies. Conclusions: Findings highlight the need for studies on caregiver burden to improve sampling techniques; better report sampling procedures and caregiver and care recipient characteristics; and develop a standard set of outcomes, including a measure of caregiving intensity. Systematic Review Registration: CRD42017080962 IMPLICATIONS FOR REHABILITATION: The amount of burden reported by caregivers to loved ones is associated with reduced physical and mental health. We found considerable heterogeneity in perceived burden reported by informal caregivers across different studies within disease groups, which is likely related to methodological issues, including sampling techniques. Health care providers who use research on caregiver burden should assess how representative study samples may be and exercise caution in drawing conclusions.