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Puneet S. Braich, Simon Hollands, David R. Almedia; Burden and Depression among Family Members Providing Care to Blind Patients in India. Invest. Ophthalmol. Vis. Sci. 2011;52(14):5577.
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To describe the degree of burden and the prevalence of depression among individuals caring for legally blind patients.
Self-rated questionnaires were completed by 522 family members who were the primary caregivers of legally blind patients registered at the Krishna Devi (KD) Dalmia Eye Hospital in Rampur, Uttar Pradesh (UP). 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.
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 16% in the 20/200 group to 48% in the NLP cohort (P<0.01). Daily hours required for close supervision of the patient, intensity of care-giving, and low household income were independently related variables for depression (P<0.01). In assessing burden, daily hours spent care-giving and the intensity of care-giving were the definitive factors linked to high Burden Index of Caregivers (BIC) scores (P<0.01). Parents providing care to their blind adult children reported the highest burden scores whereas caregivers who were spouses, siblings, and adult children reported lower scores.
The intensity of care-giving and hours spent providing care 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 rates were alarmingly high with cause for concern regarding availability of support organizations. Corollary investigation in developed nations with dedicated support organizations is underway.
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