The information and support needs of patients living with inflammatory bowel disease: A qualitative study
Open accessAbstract
Objectives: To explore patients’ experiences of living with inflammatory bowel disease (IBD) with a focus on their information and support needs. Methods: Qualitative interview study involving adults diagnosed with IBD recruited through social media. Interviews were audio recorded, transcribed and data were analysed thematically. Results: Interviews 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. Discussion: Our findings highlight the importance of clear information and support from health professionals, as well as the benefits of online communities for ongoing support. At the point of diagnosis, patients would benefit from information about what IBD is, as well as how it may impact day to day life from doctors so that social media is not the only source of initial information about IBD.
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This may indicate why acceptance modules were so well received in the current study.
“and this may indicate why acceptance modules were so well received in the current study (Karadag et al., 2022).”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Karadag et al., 2022
Previous qualitative research exploring perspectives of those living with IBD has identified that aspects of the condition that are outside of an individual's control are considered anxiety-inducing.
“Previous qualitative research exploring perspectives of those living with IBD has identified that aspects of the condition that are outside of an individual’s control are considered anxiety-inducing”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Karadag et al., 2022
A qualitative study by Karadag et al. (2022) found IBD support groups on social media increased participants' access to relevant information around IBD.
“A qualitative study by Karadag et al. (2022) found IBD support groups on social media increased participants’ access to relevant information around IBD”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Karadag et al. (2022)
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References 40 · Cited by 28
Research works printed but not linked: 1
- [38]Dahl S Eagle L. Empowering or misleading? Market Intell Plan 2016; 34: 1000– 1020.
- Authors
- Karadag, P., Morris, B., & Woolfall, K.
- Affiliations
- University of Liverpool (GB)
- Corresponding author
- Woolfall, Kerry
- Venue
- Chronic Illness
- Publisher
- SAGE Publications
- Published
- 2020-10-26
- Volume
- 18
- Issue
- 2
- Pages
- 356-369
- ISSN
- 1742-3953 (ISSN-L)
- 1745-9206
- PMC
- PMC9163778
- OpenAlex
- W3094348025
- Cited by
- 28
- References
- 40
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 9 · 2023: 5 · 2022: 1 · 2021: 2
- FWCI
- 2.09
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Chronic Illness (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Keywords
- inflammatory bowel disease, patient information needs, patient support needs, patient experience, misdiagnosis, delayed diagnosis, physician-patient communication, social media, online patient communities, anxiety, living with chronic illness
- MeSH terms
- Adult, Chronic Disease, Female, Humans, Male, Social Support, Inflammatory Bowel Diseases, Qualitative Research, Social Media
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