Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study

Abstract

Purpose Family caregivers of care-dependent patients experience a decline in their Quality of Life (QoL). However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, this study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients. Methods This longitudinal study involved 135 family caregivers in Brazil. Data were collected at baseline from October 2016 to August 2017, and at follow-up from December 2021 to July 2022. During both periods, we administered a questionnaire that covered sociodemographic, health, and lifestyle characteristics of the participants; the Barthel Index to assess the dependency level of the patients; and the WHOQOL-bref to assess the caregivers’ QoL. Results Both caregivers and care-dependent patients were more frequently elderly (44.4% versus 74.6%), female (79.3% versus 61.5%), and had non-communicable disease (60.0% versus 94.3%) at baseline. Most patients experienced a worsening in their level of dependency (59.8%), while over a third of family caregivers (34.8%) reported a decline in their General Quality of Life Index. Eight determinants of decreased QoL were identified: four protective factors (religious faith, physical activity, sharing caregiving responsibilities, and sufficient sleep) and four risk factors (patient hospitalization in the past year, patient increased care dependency, older family caregiver age, and longer caregiving duration). Conclusion Many factors influencing caregiver QoL are modifiable through intervention, underscoring the need for public policies to support family caregivers. Healthcare professionals can play a vital role in promoting protective factors and addressing risk factors to enhance caregiver QoL.