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Keywords:

  • carers;
  • daily life;
  • patients;
  • percutaneous endoscopic gastrostomy feeding;
  • qualitative research;
  • quality of life

Abstract

Background  The provision of home enteral tube feeding in adults has increased in the UK. This study explored how percutaneous endoscopic gastrostomy (PEG) feeding impacts on daily lives of adult patients, from the patients’ and carers’ perspectives.

Methods  A semi-structured interview approach was developed to obtain participants’ views of the impact of living with a PEG. A cross-sectional qualitative purposive sampling design was employed. Thirty-four semi-structured interviews were conducted (15 adult patients and 19 carers) and data were analysed descriptively and thematically.

Results  Difficulties arising from PEG feeding included vomiting, diarrhoea, infection of the PEG site and leakage. The key issues that emerged included relief of pressure to consume an oral diet, disturbed sleep, restricted ability to go out, restricted choice of clothing, difficulties finding a place to feed, missing being able to eat and drink, social occasions, negative attitudes of others towards feeding and the burden placed on family members.

Conclusions  The key themes that emerged from participants were diverse and highlight a need for increased social support for both patients and their carers, planned on an individual basis.