ArticleBMC health services research2025
What do patients and informal caregivers value in IBD care? A narrative inquiry.
Article in BMC health services research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed.
- The Impact of Informal Caregiving on Patient-Reported Outcomes, Psychological Well-Being and Quality of Life in Inflammatory Bowel Disease: A Systematic Review.Nursing reports (Pavia, Italy) · 2026Review
- Predictors of self-care among informal caregivers of patients with inflammatory bowel disease: a cross-sectional study.Annals of gastroenterologyArticle
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInflammatory Bowel Disease (IBD) is an increasingly prevalent chronic condition that impacts the lives of patients and their relatives, and burdens healthcare systems. Redesigning care processes is warranted, with digital technologies offering opportunities to increase efficiency and reduce workloads. However, successful innovations require meaningful involvement of patients and informal caregivers. In this study, we aimed to identify what IBD patients and their informal caregivers value in IBD care.
methodsA purposive sample of 18 IBD patients and 8 informal caregivers was drawn from an academic and a non-academic hospital in the Netherlands. Semi-structured interviews with a narrative approach focused on capturing real-life experiences and personal stories related to IBD care. Transcripts were analysed using inductive thematic analysis.
resultsPatients and informal caregivers valued clear information and support regarding the disease, treatment, and daily management, along with active involvement in treatment planning. Regular contact with the same trusted healthcare professionals (HCPs), and effective treatment that alleviates symptoms and enables normal living, were deemed important. Patients appreciated a holistic, personalized approach. They welcomed remote care for follow-up and self-management, as long as the remote monitoring program was trustworthy and included easily accessible outpatient care if needed. Informal caregivers valued attentive HCPs who take patients seriously.
conclusionsKey elements of IBD care valued by patients and informal caregivers include comprehensive support, active involvement, a person-centred approach, easy access to outpatient care, regular follow-ups with trusted HCPs, and remote care complementing outpatient services. Innovation teams should consider these elements when refining and developing innovations in IBD care.
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Registered trials
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