The decision-making experiences of caregivers regarding feeding tube placement in community dwelling adults

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Despite the increase in feeding tube placement as people live longer with chronic illness, the research is scarce regarding how to care for the caregiver of individuals with chronic illnesses especially with percutaneous endoscopic gastrostomy feeding tubes (PEG). This study aims to explore the caregiver’s experience regarding decision-making for PEG feeding tube placement in community dwelling adults. PEG feeding tubes are placed when individuals are unable to orally consume adequate nutrition. PEG feeding tubes ensure that individuals are able to meet their nutritional needs, but they can be accompanied by complications and other challenges that may affect daily living. Subsequently, caregivers may be involved in order to help manage care, which could lead to caregiver burden if there is lack of support. The National Institute of Nursing Research’s recent movement towards relieving caregiver burden and enhancing quality of life support the importance of this study. A descriptive phenomenological study was conducted at six post-acute care rehabilitation and skilled nursing facilities in Houston, Texas and the surrounding areas. Caregivers had some role in the decision-making for PEG feeding tube placement and intended to spend at least 4 hours per day providing direct care. Purposive sampling, data collection, and data analysis using Colaizzi’s method was conducted simultaneously. The transcripts were read and re-read with significant themes and meanings placed into a word document. They were then categorized into subthemes and placed in an excel spreadsheet for identification of overlapping themes. Although all participants expressed there was no regret in the decision to place a PEG feeding tube because it was a necessity and best for the patient, they expressed concerns about lack of education that was provided before and after PEG feeding tube placement as well as concerns about the complications. The findings suggest the need for support and adequate preparation from nurses in order to relieve caregiver burden and improve care.

Feeding Tube, PEG, G-tube, Caregiver, Enteral nutrition, Tube feeding