Patients’ Experiences and Challenges in Living with Inflammatory Bowel Disease: A Qualitative Approach

Abstract

Jelena Popov,1,2 Yasamin Farbod,1 Usha Chauhan,1 Mona Kalantar,1,2 Lee Hill,3 David Armstrong,4 Smita Halder,4 John K Marshall,4 Paul Moayyedi,4 Sharon Kaasalainen5 1Hamilton Health Sciences, Adult Digestive Diseases, Hamilton, Ontario, Canada; 2University College Cork, College of Medicine and Health, Cork, Ireland; 3Department of Pediatrics, McMaster University Medical Centre, Hamilton, Ontario, Canada; 4Department of Medicine (Division of Gastroenterology) and Farncombe Family Digestive Health Research Institute, McMaster University, Hamilton, Ontario, Canada; 5School of Nursing, McMaster University, Hamilton, Ontario, CanadaCorrespondence: Jelena PopovHamilton Health Sciences, Adult Digestive Diseases, 1280 Main Street West, HSC 3N51H, Ontario, L8S 4K1, CanadaTel [phone] ext. 73543Fax [phone]Email [email protected]: Inflammatory bowel disease (IBD) significantly impacts patients’ quality of life and imposes a considerable psychological, social, and financial burden. While the relationship between disease activity and quality of life is well established, the subjective challenges of living with IBD are more difficult to assess, and suggestions for improving patient experiences are lacking. The aim of this paper was to explore the various challenges patients encounter in living with IBD and to propose suggestions for overcoming them.Patients and Methods: This study utilized a qualitative descriptive design with thematic content analysis. Patients were recruited from the Gastroenterology Clinic at McMaster University Medical Centre from December 2014 to April 2015. Data were collected over the course of 5 focus group interviews using a semi-structured interview guide.Results: Seventeen patients aged 25 to 77 years old (mean age 43 years, SD 17 years) were interviewed. Fifteen patients were diagnosed with Crohn’s disease and 2 patients were diagnosed with ulcerative colitis. Findings were categorized into 18 subthemes which were grouped into 4 broader themes: awareness factor, psychosocial impacts, financial burden, and quality of care.Conclusion: IBD is associated with complex personal challenges across various demographics. Identifying and meeting the unique needs of individual patients may be achieved through improving communication between patients and their healthcare providers. Family-based education approaches, individualized psychotherapy with therapists familiar with IBD, awareness initiatives addressed to important stakeholders, and patient involvement in community support groups may improve overall IBD care.Keywords: Crohn’s disease, ulcerative colitis, qualitative, patient burden, psychosocial, quality of care

Keywords

• crohn’s disease
• ulcerative colitis
• qualitative
• patient burden
• psychosocial
• quality of care