Internalizing the threat of risk-a qualitative study about adolescents’ experience living with screening-detected celiac disease 5 years after diagnosis
Open accessAbstract
BACKGROUND: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved. METHODS: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis. RESULTS: The overall theme--Internalizing the threat of risk--illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. continuing to fear it is "all in vain". CONCLUSIONS: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.
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For screening-detected persons with minor or no symptoms or those who do not remember their symptoms due to young age at diagnosis, the motivation to adhere to a GFD is based on internalizing the risks or possible consequences to later health and enduring beliefs of being spared negative consequences.
“For screening-detected persons with minor or no symptoms (144, 145) or those who do not remember their symptoms due to young age at diagnosis, the motivation to adhere to a GFD is based on internalizing the risks / possible consequences to later health (146) and enduring beliefs of being spared negative consequences (146).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [146]
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- Authors
- Nordyke, K., Rosén, A., Emmelin, M., & Ivarsson, A.
- Affiliations
- Umeå University (SE)
- Lund University (SE)
- Corresponding author
- Nordyke, Katrina
- Venue
- Health and Quality of Life Outcomes
- Published
- 2014
- Volume
- 12
- Issue
- 1
- Pages
- 91
- ISSN
- 1477-7525 (ISSN-L)
- PMC
- PMC4081505
- OpenAlex
- W2060583498
- Cited by
- 6
- References
- 68
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 1 · 2022: 1 · 2016: 1
- FWCI
- 0.33
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Health and Quality of Life Outcomes (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DiVA at Umeå University (Umeå University) (submittedVersion, other-oa)
- Lund University Publications (Lund University) (submittedVersion, other-oa)
- Funders
- European Commission (521-2004-7093, 222-2004-1918, 521-2007-2953, FP6-2005-FOOD-4B-36383, 2005-0802, 222-2007-1394)
- Forskningsrådet för Arbetsliv och Socialvetenskap (2005‐0802, 222-2004-1918, FP6-2005-FOOD-4B-36383, 521-2004-7093, 222-2007-1394, 521-2007-2953)
- Vetenskapsrådet (521-2007-2953, 2005-0802, FP6-2005-FOOD-4B-36383, 222-2004-1918, 222-2007-1394, 521-2004-7093 and 521-2007-2953, 521-2004-7093)
- Umeå Universitet
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Health Sciences › Medicine › Surgery › Eosinophilic Esophagitis
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Keywords
- celiac disease, adolescents, lived experience, gluten-free diet, coping strategies, disease identity, risk perception, health screening
- MeSH terms
- Adaptation, Psychological, Adolescent, Attitude to Health, Celiac Disease, Fear, Female, Humans, Male, Mass Screening, Risk, Narration, Qualitative Research, Diet, Gluten-Free
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