Abstract
Purpose: :
To describe the degree of burden and the prevalence of depression among those caring for legally blind patients in the state of New York.
Methods: :
Self-rated questionnaires were completed by 207 family members who were the primary caregivers of legally blind patients in the central and capital New York regions. The patients were stratified into three categories by severity of blindness: (1) 20/200 to 10/200, (2) 10/200 to light perception (LP), and (3) no light perception (NLP). Patients with additional medical conditions requiring regular assistance from a caregiver (e.g., neurological deficit) were excluded from the study. This criterion was implemented to isolate those caregivers that needed to provide care solely due to a patient’s visual impairment. The validated Burden Index of Caregivers (BIC) was used to measure care burden and the Center for Epidemiologic Studies Depression (CES-D) scale was applied to determine depression.
Results: :
Severity of vision loss in patients directly correlated with rates of depression in caregivers. The prevalence of caregiver depression increased with degree of visual impairment from 9% in the 20/200 group to 27% in the NLP cohort (P<0.01). In assessing burden, hours spent providing care, the intensity of care-giving, and the presence of multiple chronic illnesses in the caregiver were the definitive factors linked to high Burden Index of Caregivers (BIC) scores (P<0.01). Unlike a similar study in an Indian population, the relationship of the caregiver to the blind patient played no significant role in depression or perception of burden.
Conclusions: :
The intensity of care-giving, hours spent providing care, and presence of chronic illness in caregivers were the main variables significantly related to burden. Caregivers of patients with NLP experience greater burden and depression than caregivers of patients with lesser degrees of blindness. Depression in American caregivers was less prevalent than depression in Indian caregivers from our earlier study. The differences between both populations are likely due to disparities in socioeconomic status, cultural attitudes about autonomy in visually impaired patients, and the availability of vision rehabilitation services.
Keywords: low vision • quality of life • aging: visual performance