Decision-making in chronic disease: an exploration of the experiences of people with IBD
Caring for people with chronic diseases is a key aspect of primary care, so it is important for general practitioners to understand the complex healthcare decisions faced by these patients throughout their treatment. Shared decision-making allows delivery of high-quality care aligned to patients’ values and preferences. Inflammatory Bowel Disease (IBD) is a chronic, relapsing-remitting condition which may present and be managed in primary care.
We aimed to investigate the experiences of people with IBD making decisions about their care. The objectives of this study were: to carry out semi-structured interviews and perform thematic analysis to identify areas of importance for IBD patients in decision-making.
Participants were purposively sampled from a secondary care clinic. Interviews were carried out by telephone or video call and transcribed. Nvivo 2020 software was used to code quotes and perform thematic analysis, using Braun and Clarke’s 2006 methodology.
26 interviews were carried out (median age 47.5 years (17-83), 62% female). Thematic analysis generated four themes.
Theme 1 described how information, physical health, disease duration, patient-clinician relationships and stress levels influence decision-making capability and opportunity. Theme 2 highlighted sources of support for IBD patients, including specialist nurses, family, friends, and the internet. Theme 3 explored the responsibilities and expectations perceived by patients. Theme 4 investigated how the burden of decision-making may be shared between patients, clinicians, and family members.
People with IBD are typically engaged and self-assured when making decisions about care, however there are multiple factors which may affect decision-making confidence. Emphasis was placed on the importance of shared decision-making and access to support. If the goal of a positive decision-making experience for every patient is to be achieved, identification of what really matters to the individual is crucial. General practitioners should explore their patients’ decision-making preferences and adjust care delivery accordingly.