ArticleChronic illness2022
The information and support needs of patients living with inflammatory bowel disease: A qualitative study.
Article in Chronic illness, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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The trial behind it
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Who cites it
16 citing papers in PubMed, 29 citations in OpenAlex.
- Caregiver Contribution to Self-Care in Adults with Inflammatory Bowel Disease: A Cross-Sectional Multicenter Study.Nursing reports (Pavia, Italy) · 2026Article
- Subclass-Aware Contrastive Semi-Supervised Learning for Inflammatory Bowel Disease Classification from Colonoscopy Images.Bioengineering (Basel, Switzerland) · 2025Article
- Social Listening as a Tool to Understand Nutrition-Related Information Needs: A Case Study in Inflammatory Bowel Disease.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025Article
- Understanding diagnostic delays and health outcomes for inflammatory bowel disease: a mixed-methods study of patients' perspectives.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Patients' experiences and practices of medication literacy in inflammatory bowel disease: a qualitative study.Frontiers in pharmacology · 2025Article
- Designing the Essential Informational Needs of a Smartphone Application for Self-Management of Patients With Inflammatory Bowel Disease.Health science reports · 2024Article
- Article
- Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation.Journal of clinical psychology in medical settings · 2024Article
- Inflammatory bowel disease patients' perspectives of non-medical needs.BMC gastroenterology · 2024Review
- Characteristics and associated factors of health information-seeking behaviour among patients with inflammatory bowel disease in the digital era: a scoping review.BMC public health · 2024Article
- Article
- Inflammatory Bowel Disease and X (Formerly Twitter) Influencers: Who Are They and What Do They Say?Cureus · 2023Article
- Symptoms and symptom clusters in patients newly diagnosed with inflammatory bowel disease: results from the IBSEN III Study.BMC gastroenterology · 2023Article
- Identification of the informational and supportive needs of patients diagnosed with inflammatory bowel disease: a scoping review.Frontiers in psychology · 2023Article
- Development and Validation of a Deep Neural Network for Accurate Identification of Endoscopic Images From Patients With Ulcerative Colitis and Crohn's Disease.Frontiers in medicine · 2022Article
- Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo explore patients' experiences of living with inflammatory bowel disease (IBD) with a focus on their information and support needs.
methodsQualitative interview study involving adults diagnosed with IBD recruited through social media. Interviews were audio recorded, transcribed and data were analysed thematically.
resultsInterviews with 15 patients (9 females, 6 males) highlighted how misdiagnosis or hesitation to diagnose had caused frustration and anxiety. Once diagnosed, only a few participants received detailed information about IBD from their doctor. Negative experiences shared on social media caused initial anxiety, as individuals assumed that they may have a similar experience, yet online communities enabled insights into the experiences of others, helping patients adjust to living with IBD. Participants described both positive and negative impacts of living with IBD, including improved confidence and periods of anxiety.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.