Causes of Feelings of Burden for Caregivers of Pediatric HEN Patients

Calderón C, Gómez-López L, Martínez-Costa C, Borrcas Z, Moreno-Villero JM, Pedrón-Giner C. Feeling of burden, psychological distress and anxiety among primary caregivers of children with home enteral nutrition. J Pediatr Psychol. 2011 Mar;36(2):188–195.


For caregivers, the psychological impact of home care activities, such as home enteral nutrition (HEN), is determined by a number of factors. These include external forces (social support, the caregiver’s socioeconomic status, the doctor-patient relationship, knowledge of the disease, and home equipment needs); patient-dependent factors (illness severity, short-term prognosis, patient-caregiver relationship and patient psychological status); and caregiver-dependent factors (lifestyle, anxiety, ability to perform tasks, employment demands, and levels of grief and fear).

Calderón and colleagues examined the relationship between severe psychological factors and the burden experienced by caregivers of HEN pediatric patients. Fifty-six mothers who served as primary caregivers for their children on long-term HEN were evaluated for overall “caregiver burden” using standardized tools.

Researchers found that maternal age and family socioeconomic status were not significantly related to caregiver burden. Also, no specific patient diagnosis was related to caregiver burden. However, caregiver anxiety and psychological stress significantly increased the degree of caregiver burden. Although not demonstrated here, other studies have shown that the number and complexity of a patient’s disease did impact caregiver burden.

This study underscores the impact of the caregiver’s mental health and ability to cope with stress on their feelings of “burden.” These increased feelings of burden could result in marital discourse, resentment, reduced quality of life, and poorer overall care delivered by the caregiver. Health providers, including home care and home equipment providers, need to be fully aware of these issues and the potential impact they may have on the patient. Efforts should be made to assess caregiver burden during the course of a patient’s treatment in the home environment.