Abstract
OBJECTIVE: There are limited data about how South Asian (SA) patients, their caregivers and their physicians make decisions about treatment, in particular advanced therapies. The study aimed to explore how SA people with inflammatory bowel disease (IBD), their family members and clinicians experience and perceive treatment-related decision-making with the aim of identifying strategies to improve treatment decision-making in Canada. DESIGN: A descriptive qualitative study with in-depth semi-structured interviews. SETTING: Canada. PARTICIPANTS: Adults residing in Canada, who self-identified as SA, had received treatment or cared for someone who received treatment for IBD from a gastroenterologist in Canada, and who spoke and understood English, Hindi and/or Punjabi were eligible to participate in the study. Clinician participants (eg, nurses, gastroenterologists, colorectal surgeons) were eligible if they had experience treating SA patients with IBD. INTERVENTIONS: Data from 1:1, semi-structured interviews were analysed using deductive and inductive thematic analysis. RESULTS: The length of time spent in Canada played a central role in patient perspectives on decision-making around IBD treatment. First or second-generation SA people, residency status, family and community involvement, universal factors like stigma, medication costs and preferences for non-pharmacological treatments influenced decision-making. Patient and caregiver participants reported high satisfaction with treatment-related decision-making processes, while clinician participants self-reported lesser satisfaction. CONCLUSIONS: Clinicians and researchers working with SA patients in chronic disease specialties can use these findings to meet the healthcare needs and reduce disparities in optimal treatment for this patient population. TRIAL REGISTRATION: N/A.