Patients and home carers' experience and perceptions of different modalities of enteral feeding

To explore patients and carers' experience and perceptions of different modalities of long-term enteral feeding.

With an ageing population in Singapore, there is a concomitant increase in number of patients with dysphagia and hence increase in prevalence of enteral feeding. It is essential to understand experiences of patients and home carers with long-term home enteral feeding and perceptions of different modalities to better provide support.

A qualitative descriptive approach fulfilling the COREQ checklist criteria (See File S1). Nine patients who were receiving long-term enteral feeding and nine carers were recruited over the period of August to December 2017. One-to-one interviews were conducted and audio-recorded. An inductive content analysis approach, with open coding, creation of categories and abstraction of data, was adopted.

Three themes were generated: (a) factors influencing choice of mode of enteral feeding; respondents narrated factors such as need to "conceal" illness, need to be independent and previous bad experience with alternative modality (b) identified informational, emotional and physical needs. Respondents reported the need for support in terms of information on the different modalities, and training on how to self-care or provide care and (c) individual perception and attitude towards life with enteral feeding. Most respondents portrayed a positive outlook to life, despite that they could no longer participate in communal eating.

Understanding patients and carers' experience and perceptions will inform the development of strategies to empower future patients and carers in choice of modality for enteral feeding. Patients with percutaneous endoscopic gastrostomy (PEG) found it easier to integrate enteral tube feeding into daily lives. Carers played a pivotal role in choice of modality, as well as in care of patients on enteral feeding.