Caregivers in the management of home-enteral-nutrition-patients: observational study on epidemiology, organisation, technical aspects and quality of life
Affiliations: [a] Division of Dietetics and Clinical Nutrition, Central Hospital, Bolzano, Via Lorenz Böhler, 5, 39100 Bolzano, Italy. e-mail: marion.schrei@asbz.it
Abstract: Aim of the investigation was to get epidemiological informations regarding the home enteral nutrition (HEN) as well as to check the point of view of caregivers regarding organisation, technical aspects and their quality of life. The observational study was conducted on the caregivers of all HEN patients of the health-district of Bolzano. The first survey was conducted in February 2008 (n = 028) and the second one in September 2009 (n = 40), with a questionnaire composed of 16 items related to general/emotional/technical/social/economic and ethical aspects. The participants of the study could validate the questions on a scale from 1 (none) to 7 (very much). Prevalent disease of HEN patients was in 55.8% neurological, in 19.1% neoplastic, in 17.5% vascular and in 7.6% from other causes. The main reported difficulties in the management of HEN patients were related to constipation (30.8%), adjustment of the drip (22.1%), vomiting (14.7%), diarrhoea (10.3%), peristomitis from PEG (8.8%), ulcers and regurgitation (7.7%). Emotional involvement of the caregivers was very high (6.14–7 in 2008 and 5.13–7 in 2009), but the social life and relationships of caregivers did not seem impaired (3.82–7 in 2008 and 3.29–7 in 2009). 83.8% of the caregivers were first degree relatives, in which emotional involvement was very high. The most frequent suggestions to improvements were more home visits and more support on weekends and holidays. Management of HEN does not raise particular concerns in caregivers, but the presence of a specifically dedicated structure and its support were perceived very useful.
Keywords: Caregiver, Enteral nutrition, Home nutrition support, Long-term care, Epidemiology
