Abstract
Background Patients undergoing dialysis require intensive treatment and supportive care, which affects their caregivers physically, socially, economically, and psychologically. However, this topic has been largely underexplored. Objectives This study aimed to examine the socio-economic and psychological burdens experienced by primary caregivers of patients undergoing dialysis. Method This cross-sectional study was conducted over 12 weeks using purposive sampling of primary caregivers of patients undergoing dialysis at two public and two private dialysis centers in Trinidad and Tobago. The questionnaire collected data on socio-demographics, economics, and selected psychological issues. Selected global health status questions adapted from the World Health Organization Quality of Life Brief Version were included. Participants were assured of confidentiality and anonymity. Verbal consent was obtained by completing an online questionnaire. The collected data were entered into a Statistical Package for the Social Sciences spreadsheet. Data analysis included hypothesis testing at a 5% level of significance using chi-square tests of association and analysis of variance. Results The final sample comprised 150 participants (response rate: 100%). The majority of caregivers were aged 46-55 (n = 44, 29.3%), women (n =82, 54.7%), and had attained tertiary-level education (n = 82, 54.7%). Most caregivers were the patient's son or daughter (n = 53, 35.3%), lived with the patient (n = 83, 55.3%), and were employed full time (n = 104, 69.3%). More than half (n = 79, 52.7%) reported having at least one health condition, with 40% (n = 61) reporting "getting sick easily" after becoming a caregiver. The majority experienced psychological symptoms of feeling nervous, anxious, or on edge (n = 115, 76.7%). Caregivers reported feeling depressed (n = 49, 32.7%), experiencing burnout (n = 101, 67.8%), and having suicidal thoughts (n = 10, 6.7%). Caregivers spent between one (n = 4, 2.7%) and four (n = 30, 20.0%) days a week taking patients for dialysis treatments, with the majority (n = 80, 53.3%) spending three days weekly. Travel time to dialysis centers ranged from 45 minutes (n = 46, 30.7%) to three hours (n = 5, 3.0%). Most caregivers also reported difficulty having a good work-life balance (n = 106, 70.7%), inability to attend social events (n = 93, 62.0%), reduced personal time (n = 86, 57.3%), and the need to adjust their work hours (n = 99, 66.0%). The majority also experienced economic hardships such as worrying about finances (n = 102, 68.0%). Caregivers also wished other family members contributed financially to patient care (n = 107, 71.3%), especially because the majority (n = 99, 66.0%) were unable to afford to send the patient to a nursing home. Nearly half (n = 66, 44%) of caregivers rated their quality of life (QoL) as "less than good"and more than half (n = 99, 66%) felt that their life lacked meaning. Conclusion Caregivers spend a considerable amount of time with patients, which affects them biologically, socially, economically, and psychologically. More than half of caregivers had challenges in maintaining a work-life balance. The majority were worried about finances (n = 102, 68.0%). Participants experienced anxiety (n = 116, 76.7%), burnout (n = 102, 68.0%), depression (n = 49, 32.7%), and suicidal thoughts (n = 10, 6.7%). These findings underscore the need for targeted intervention to support caregivers and improve their overall QoL.