A qualitative systematic review of family caregivers' experiences of artificial nutrition and hydration at home: A meta-ethnography.
Dominika Lisiecka, Áine Kearns, Aisling Bonass
PMID 35439344WHAT IT FOUND
Family caregivers describe starting home tube feeding as overwhelming and isolating, often lacking adequate training.
Support improves when professionals provide tailored education and allow minimal oral intake for pleasure, which reduces burden and social isolation.
Key findings
01Caregivers frequently feel forced into the role and struggle with the lack of professional guidance and time to learn necessary skills.
02Allowing even minimal oral intake, such as tastes for pleasure, significantly reduces caregiver burden and helps restore social mealtime experiences.
03Professional support must be individualized and include both clinical and psychological components, with follow-up services being highly valued but not universally offered.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
The review did not distinguish between different types of artificial nutrition (enteral vs. parenteral) or feeding regimes, which may have different impacts on caregiver experience. Only English-language studies were included, and supplementary searches like hand searching were not performed due to resource constraints. The authors are all speech-language therapists, which may have influenced the interpretation of findings towards swallowing and oral intake issues. Socio-economic status was not reported in any of the included studies, limiting understanding of financial stressors.
Declared interests
The authors declare no conflict of interest.
The easy way to misread this
Do not assume that artificial nutrition and hydration at home is a purely medical intervention with no psychosocial cost to the family. The study shows that even when medically necessary, it can cause significant distress, isolation, and burden for caregivers, requiring active psychosocial and educational support.