Dysphagia in a Palliative Care Setting--A Coordinated Overview of Caregivers' Responses to Dietary Changes: The DysCORD qualitative study

J Palliat Care. 2015;31(4):221-7. doi: 10.1177/082585971503100403.

Abstract

Primary caregivers (PCGs) are closely involved in preparing meals and feeding patients who are at the end of life, yet their responses to patients' swallowing difficulties have not been extensively analyzed. This study aimed to reach an understanding of PCGs' beliefs, values, and responses to dysphagia and dietary modifications in the palliative care setting. A total of 14 PCGs were interviewed and asked to share their thoughts and feelings about patients' dysphagia symptoms and the diet changes resulting from these symptoms. Qualitative descriptive analysis revealed four emerging themes: caregivers' knowledge, the symbolic role of food, emotional responses to dysphagia, and discordance with dietary recommendations. Our study found that PCGs appear to have a strong desire to continue feeding patients. The findings suggest that providing PCGs with knowledge and emotional support could help them to deal with this issue.

MeSH terms

  • Adult
  • Aged
  • Caregivers / psychology*
  • Deglutition Disorders / physiopathology*
  • Diet*
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Palliative Care*
  • Qualitative Research