Abstract
AIMS: To explore reasons why patients with inflammatory bowel disease (IBD) do (not) engage in fatigue-related care and their care needs. DESIGN: A qualitative interview study, using a phenomenological methodological approach. METHODS: We included 16 fatigued patients with IBD in remission. Data were collected between December 2021 and March 2022, using semi-structured interviews. Template analysis was performed. RESULTS: We identified six themes regarding reasons why (not) to seek care for fatigue: (1) Cognitions about fatigue and coping with fatigue, (2) perceptions of fatigue-related care and previous care experiences, (3) perceived knowledge and behaviour of healthcare professionals, (4) physical and emotional well-being, (5) social relationships and support, and (6) practical factors. Regarding their care needs, patients reported a need for a holistic and person-centred care approach, with healthcare professionals actively addressing fatigue and offering care. They suggested a range of options for what care to offer, including eliminating physical causes of fatigue, discussing medication options, providing information on fatigue management, lifestyle support, psychological support, peer support and practical support. CONCLUSION: Both patient- and healthcare-related factors play a role in why IBD patients do (not) seek fatigue-related care. Our findings emphasise the importance of active screening and discussion of fatigue, using a holistic and person-centred approach to treat fatigue. IMPLICATIONS: This study contributes to the understanding of IBD patients' facilitators and barriers for seeking care for fatigue and their care needs. Moreover, results can inform nurses and physicians about ways to optimise the offer and uptake of fatigue-related care, and the development of interventions that fit patients' needs. Results also provide implications for the treatment of fatigue in other chronic (inflammatory) conditions. IMPACT: The current results can inform nurses and physicians about ways to optimise the offer and uptake of fatigue-related care, and the development of interventions that fit the needs of patients with IBD. An increase in the uptake of effective and acceptable interventions can improve patients' health and well-being. REPORTING METHOD: Findings were reported following the consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patients, service users or members of the public were involved in this study. The study focused on patients' experiences with fatigue-related care and their needs.