Exploring the lived experiences of adults using home enteral nutrition and their caregivers: A meta-aggregation qualitative systematic review.

Abstract

Home enteral nutrition (HEN) provides nutrition through a tube to individuals at home who cannot meet their needs by mouth. Systematic reviews have explored the experiences of HEN subpopulations, such as those with head and neck cancers. Given HEN services care for adults with various underlying conditions, a synthesis of the experiences of all adults using HEN and their caregivers is warranted. The purpose of this study is to summarize the experiences of HEN adult users and their caregivers regardless of underlying condition. Medline, PsychINFO, EmBase and CINAHL were systematically searched in January 2024. Studies with qualitative results and adult participants and focused on HEN were included. Studies with participants in nursing facilities, results using word counts, or not in English were excluded. Study quality was assessed using the Johanna Briggs Institute (JBI) qualitative checklist. Study design and participants' details were extracted. Themes were collated using the JBI meta-aggregative method. Forty studies (n = 732) were included. Three synthesized findings were identified: positive experiences (very low ConQual score), negative experiences (low ConQual score), and facilitators and coping mechanisms (moderate ConQual score). Although more negative than positive experiences were reported, users and caregivers who developed coping mechanisms or accessed supports viewed HEN as a worthwhile experience. Those with few supports or coping mechanisms did not. Based on this review, it is proposed that before starting HEN, users and caregivers should be made aware of the available supports and coping mechanisms. As negative experiences arise, healthcare providers should help users and caregivers access supports to improve their experiences.