Ethical Burden of Older Informal Caregivers: Potential Explanatory and Alleviating Factors

Ethical burden arises in care situations when a caregiver is uncertain about the appropriate course of action or is unable to act in accordance to what she or he perceives as ethically right. Despite its potential impact, the prevalence of ethical burden among older informal caregivers, and its associated factors remain insufficiently understood. The aim of this study was therefore to investigate the prevalence of ethical burden among informal caregivers aged 65 and older and its associations with sociodemographic factors, positive experiences, caregiving-intensity related factors, health and psychosocial factors. The study utilized data from the Gerontological Regional Database (GERDA) survey conducted in Finland in 2021/2022. The study population comprised 627 informal caregivers. Descriptive statistics and multiple logistic regression analyses were conducted. Forty percent of informal caregivers reported experiencing ethical burden. The perception that caring for a loved one is meaningful and provides a sense of joy and purpose was found to reduce the likelihood of reporting ethical burden (aOR 0.66, 95% CI 0.45-0.95). Conversely, the likelihood of experiencing ethical burden increased with financial strain (aOR 1.52, 95% CI 1.14-2.03) and the use of home care services (aOR 2.36, 95% CI 1.14-4.88), tentatively reflecting a demanding and burdensome caregiving situation. Future research could focus on interventions aimed at reducing ethical burden by both strengthening positive caregiving experiences and enhancing caregiving intensity-related and finances-related support, as these represent important and modifiable targets.