Experience of providing care to a family member with Crohn's disease and a temporary stoma: A qualitative study

Abstract

Objectives: The aim of this study is to understand the feelings and experiences of the main caregivers of temporary ostomy patien ts with Crohn's disease (CD). And explore the caregivers' inner feelings, to provide reference and basis for constructing the health education content of the main caregivers of CD patients with a temporary stoma. Methods: A qualitative descriptive approach was used to conduct an unstructured interview among 11 primary caregivers of CD patients with temporary enterostomy from the gastroenterology department of The Second Hospital of Nanjing. Participants were selected using a purposive sampling technique. Data were collected between July 2021 and September 2021. The interviews were audio recorded and then transcribed for a qualitative thematic analysis. Results: Five themes and accompanying subthemes were identified: (1) negative psychological experience (2) perceived caregiver burden (3) future uncertainty (4) disease benefit (5) insufficien support system. Conclusions: Study findings suggest that caregivers of CD temporary enterostomy patients have problems such as negative psychology, heavy caregiver burden, uncertain future, lack of support system, etc., but they also have positive experience of feeling of benefit from the disease, and are eager to obtain more disease information from more channels.Therefore, medical staff should improve their professionalism and health education capabilities, carry out diversified and targeted health education activities to reduce the burden of care, stimulate positive caregiver responses and help caregivers respond to and deal with caregiving problems in a timely and accurate manner.

Keywords

• Crohn's disease
• Temporary enterostomy
• Caregiver
• Caregiver burden
• Nursing
• Qualitative study