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Keywords:

  • chronic illness;
  • eating;
  • gastroparesis;
  • psychological distress;
  • symptom experience

Aims and objectives

To report the experience of patients living with gastroparesis.

Background

The complex illness of gastroparesis is a condition of delayed gastric emptying associated with a range of different symptoms, including nausea, vomiting and depression, resulting in altered eating patterns. Patients are often over-investigated, treatments are not always successful, and quality of life is often impaired.

Design

A descriptive phenomenology study was undertaken to examine the experience of living with gastroparesis. Nine gastroparesis patients gave in-depth interviews. The interviews were transcribed, and framework analysis methods applied.

Methods

A descriptive phenomenology study was undertaken. Nine gastroparesis patients gave in-depth interviews. The interviews were transcribed, and framework analysis methods applied.

Results

Four main themes emerged: the first described their experiences and opinions of medical professionals, the second their understanding of mental health and mental illness, the third how they managed social settings and the fourth their identity and security. Their behaviour around food and mealtimes was often associated with feelings of loss, isolation and rejection, which influenced their reported quality of life. These factors resulted in their personal struggle to understand how this chronic, stigmatising illness affects their identity and their need for security.

Conclusions

The complex illness of gastroparesis affects every aspect of patients' lives. As treatments for gastroparesis continue to evolve, therapies to help these patients address the psychological impact and the feelings of loss they report must not be overlooked.

Relevance to clinical practice

A better understanding of these patients' sense of loss of normal eating behaviour and the associated psychological distress needs to inform gastroparesis service provision with a view to developing a more holistic service for this patient group.