Purpose: Since there is no information regarding quality of life of caregivers assisting patients with advanced malignancy on home parenteral nutrition, herewith we report a preliminary series of 19 patients who received total parenteral nutrition at home under the strict supervision of their relatives.
Methods: The relatives of 19 incurable patients with cancer-related cachexia, discharged from the hospital with a home parenteral nutrition program, were prospectively studied. They filled out a validated questionnaire, the Family Strain Questionnaire Short Form, prior to patient discharge and after 2 weeks of home care. The questionnaire included 30 items, which explored different domains regarding the superimposed burden on caregivers in relation to the assistance given to their relatives.
Results: Our findings show that the basal level of strain was relatively high (about three quarters of positive answers) but did not increase after 2 weeks of home care. Similarly, there was no difference in the nutritional status and quality of life of the patients. Eight patients and their relatives could be also analyzed after 2 months and the results maintained unchanged.
Conclusion: This preliminary investigation shows that home parenteral nutrition does not exacerbate the level of strain on caregivers involved in surveillance of such a supportive intervention. It is possible that the perception of an active contribution to the benefit of patients, who maintained unchanged their nutritional status and quality of life, could gratify caregivers despite the objective burden in the constant supervision of administering Parenteral Nutrition.
Keywords: Caregivers; Family Strain Questionnaire; Home parenteral nutrition; Patients with incurable cancer.