A meta-synthesis exploring caregiver experiences of home enteral tube feeding

Abstract

Background: It is estimated that 18,232 people received home enteral tube feeding (HETF) in the UK in 2013 and HETF often requires reliance on a caregiver. Caregivers are an essential resource, and so research is needed to explore their perspectives to inform how best to support them. Therefore, this meta-synthesis aimed to explore caregiver experiences of HETF. Methods: A systematic search and a meta-synthesis of the literature relating to caregiver experiences of HETF were undertaken. Ethical approval was obtained from Coventry University Ethics. A comprehensive search of CINAHL, MEDLINE, Academic Search Complete and SCOPUS databases was conducted, followed by a reference list search of included studies. Studies were screened for eligibility using a priori inclusion criteria. Included studies used qualitative methodology, were in English, and explored caregivers’ experiences of supporting an adult or child receiving HETF for at least 1 month. The meta-synthesis was conducted using a thematic-synthesis method. Included studies were assessed for quality, and rigour was ensured via transparent reporting of methodology, peer review and reflexivity. Results: In total, 328 records were screened, with 10 studies included and a total of 97 caregivers’ experiences were reported. Four analytical themes were developed: loss of a normal life, psychological impact, practical challenges and becoming the ‘expert’. Overall quality of the included studies was assessed as good. Conclusions: This meta-synthesis highlighted the challenges experienced by caregivers, and revealed the need for improved HETF training for caregivers and psychological support from healthcare professionals, with the aim of providing personalised advice and regimes as part of holistic care.