Burden assessment in caregivers of patients with home artificial nutrition: a need and a challenge

Caregiving can be a stressful task with severe consequences on caregivers' health. Our aim was to evaluate the profile and the burden of caregivers of patients with home artificial nutrition (HAN) in our area.

We conducted a prospective observational study of patients who had started HAN over a period of a year (n=573) and their home caregivers (n=103). Epidemiological characteristics of the patients and the type of HAN were registered. Caregivers' profile data (gender, age and degree of kinship) and Zarit Burden Assessments were recorded.

Care recipients had a median age of 79.0 (IQR 87) years, neurological and oncological diseases in 50% and a high rate of mobility limitations (80%). Oral supplements with high-calorie formulas were predominant (60%). The usual caregiver profile was a patient's daughter with a mean age of 53.1 (s.d. 13.4) years acting as the primary caregiver. Burden was absent in 49.5%, light in 18.4% and intense in 32% of caregivers. Intense burden was more frequent in oral over enteral nutrition (42% versus 22.6%; P=0.036). Supplementary nutrition was also associated with higher caregiver burden scores compared with complete diets. In patients with functional limitations, a tendency toward a slightly higher burden was observed. No differences in caregiver burden were detected according to other patient or caregiver characteristics.

HAN type appears to be a factor influencing caregiver burden and therefore, evaluation of caregiver burden should be part of HAN programs.