The experience of family caregivers of patients receiving home nasogastric tube feeding in China: A descriptive qualitative study

Abstract

Background: The value of caregivers with respect to ensuring safety during home nasogastric tube (NGT) feeding is increasingly acknowledged. However, little attention has been given to the experience of caregivers. Methods: A qualitative descriptive design using semi-structured interviews via purposive sampling at a comprehensive hospital in China was employed. Family caregivers of patients with home NGT feeding were recruited. Interviews were recorded, transcribed verbatim and analysed qualitatively using inductive content analysis. Results: Thirteen family caregivers of patients with home NGT feeding were interviewed. Four main themes were generated: negative experience (uncertainty and ambivalence, transition gaps between hospitals and home care services), new role: adapting to the lifestyle (participating in decision-making, being responsible for everything, adjusting own life to NGT feeding), perceived benefit of caregiving (personal growth, development of positive attitudes and achievements) and expectations (expectations from continuity health system services, expectations from social support). Conclusions: The present study highlights the vulnerability and perceived benefits embedded in the role of a family caregiver. Improving communication and standardising practices between home and hospitals should be considered.