Defining the Experience and Burden in Caregivers of Patients with Pelvic Floor Disorders

Objectives: Caregiver burden is the negative multidimensional toll caregiving exacts on providers. This concept has not been well characterized in caregivers of a urogynecology population. This study sought to describe and quantify the experience of providing care to patients with pelvic floor disorders (PFDs).

Methods: This was a cross-sectional study of adult caregivers of patients who presented to a tertiary Urogynecology clinic from May 2021 to April 2022. Caregivers were included if they provided care without pay. The Zarit Burden Interview (ZBI), demographic surveys, and questionnaires on time spent and roles performed providing care were administered. The ZBI is a validated measure of caregiver burden on a scale from 0 to 88; caregivers with scores > 24 place a caregiver at risk for depression. Wilcoxon rank-sum compared non-parametric data. The strength of association between variables was tested with the Pearson correlation coefficient and Kendal rank test for parametric and non-parametric data, respectively.

Results: In total, 40 caregivers were surveyed. The mean age of the caregivers 65.3 (SD = 16.4). The majority of caregivers were female (57.5%), white (90%), and non-Hispanic (95%). Most caregivers were either spouses (40%) or adult children (40%) of patients. Average ZBI score was 18.3 (SD = 14.4), and 40% of caregivers reported caregiver burden. Approximately one third of caregivers met a threshold of burden which put them at risk for depression. The median amount of time spent providing care was six hours per week (IQR: 2 – 26). However, 10% of caregivers estimated caregiving for > 72 hours per week. There was a positive correlation between number of hours provided and burden experienced (τ = 0.45, p < .001); for each additional hour of care, the ZBI score increased 0.3 points, (95% CI: 0.1 to 0.4, p = .004). For the 10% who reported > 72 hours per week, their ZBI scores can increase 20 points over the mean ZBI. On average, caregivers provided eight (SD = 3) distinct roles to help patients in their daily activities; for each additional role provided, the ZBI score increased 1.7 points (95% CI: 0.4 – 3, p = .01). Caregivers who reported that they maneuver the patient into and out of bed had a higher ZBI score (median = 32, IQR: 11 – 43) than caregivers who do not assist with that task (median = 12, IQR: 7 to 23; p = .04).

Conclusions: Informal caregivers of patients with PFDs experience significant caregiver burden. Increased demands on a caregiver, either in the form of time devoted to caregiving or the number of responsibilities expected of a caregiver, are correlated with increased burden and risk for depression. Health care professionals managing PFDs should be cognizant of caregiver burden to identify individuals who need intervention.