Home Enteral Nutrition therapy: Difficulties, satisfactions and support needs of caregivers assisting older patients

Background & aims: The purpose of this study was to comprehend and describe the views, experiences and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition. The objective was to gather empirical evidence to improve the delivery of Home Enteral Nutrition for old patients taking into account the caregivers' support needs. Methods: A qualitative methodology with focus groups as data collection method was used to collect the testimonies of 30 informal and formal caregivers of older patients treated with Home Enteral Nutrition by the Clinical Nutrition Service of INRCA (Ancona) during 2014. Quantitative methodology was used to collect socio-demographic data. Partially modified Silver's "Home Enteral Nutrition Caregiver Task Checklist" was used to identify training needs. The constant comparison method was used to code and categorize data and to develop themes of focus groups. Simple descriptive statistics were used to summarize questionnaires. Results: Five main themes were identified from focus groups: acceptance of the therapy, skill acquisition process, need for psychological and practical support at home from healthcare professionals, lifestyle adaptation, affirmation of life and family. All caregivers testified the initial fear and refusal to manage the nutrition pump and the therapy. They expressed the need to be trained gradually, starting during a patient's hospitalization, and continuing in the community. With reference to their overall QoL, it emerged that informal caregivers suffered mostly from the reduction of their free time while formal caregivers suffered social isolation and psychological burden. For both groups the monthly home visit was the most important element of the HEN service. Informal caregivers highlighted the importance of having their loved ones at home. Unsatisfied training needs were identified by the modified Silver's "Home Enteral Nutrition Caregiver Task Checklist". Conclusions: This qualitative study underlined the challenges and adaptations of caregivers who assist older patients treated with Home Enteral Nutrition, which should be considered when defining clinical protocols and supporting caregivers.