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How do children experience participating in a coeliac disease screening?: a qualitative study based on children's written narratives
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.ORCID iD: 0000-0001-8944-2558
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2010 (English)In: Scandinavian Journal of Public Health, ISSN 1403-4948, E-ISSN 1651-1905, Vol. 38, no 4, 351-358 p.Article in journal (Refereed) Published
Abstract [en]

AIM: To explore how 12-year-old Swedish children experienced being involved in a coeliac disease (CD) screening. METHODS: A qualitative approach was used to analyse short narratives written by children who had taken part in a school-based CD screening. Narratives were written after blood sampling, but prior to learning of the test results. Through an oscillation between the texts, codes, subcategories and four categories, a theme was generated describing the children's experience. RESULTS: The theme ''A Journey towards Confidence'' captures the overall experience of the screening. It illustrates that, although some children faced fear or anxiety, overall they had or were provided tools allowing them to cope well and experience a journey towards confidence. The categories describe conditions that contributed to the experience. The first, being involved, reflects the importance of involvement in receiving information and deciding to participate. Being a ''good citizen'' refers to feeling a duty to help and a trust to be treated fairly. Being able to cope with the screening was influenced by the children's ability to manage sensations and support received. The last category, being able to balance risk, illustrates that the children were able to balance the risks of screening when they had a realistic understanding of the disease and their vulnerability and had tamed their anxiety. CONCLUSIONS: This study increases the understanding of how 12-year-old Swedish children experienced participating in a CD screening and describes conditions important for a positive experience. We show that, although some children faced anxiety, they had, or were provided with, tools allowing them to cope well and gain confidence.

Place, publisher, year, edition, pages
2010. Vol. 38, no 4, 351-358 p.
Keyword [en]
childrencoeliac, diseasepersonal, narrativesqualitative, researchscreening
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:umu:diva-34519DOI: 10.1177/1403494810368454ISI: 000278152300003PubMedID: 20413585OAI: oai:DiVA.org:umu-34519DiVA: diva2:322680
Available from: 2010-06-08 Created: 2010-06-08 Last updated: 2015-04-29Bibliographically approved
In thesis
1. Mass screening for celiac disease: a public health intervention from the participant perspective
Open this publication in new window or tab >>Mass screening for celiac disease: a public health intervention from the participant perspective
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background  Celiac disease (CD) is a chronic disorder in genetically predisposed individuals in which damage to the small intestine is caused by eating foods containing gluten. The prevalence has been shown to vary from around 1-3%, but most people with CD are undiagnosed. An option for finding those with unrecognized CD would include screening the general population, i.e., mass screening. However, screening identifies a pre-disease or disease condition in people who are presumed healthy and have not sought help. Therefore, the impacts of the screening process and being diagnosed through screening should be explored before such a public health intervention is considered. A population-based CD screening study involving 12-year-olds was undertaken in Sweden and provided an opportunity to explore these issues related to CD screening.

Aims To make inferences about the potential impacts mass screening for CD can have on participants by exploring experiences and outcomes for participants involved in CD screening study.

Methods and Subjects  Both qualitative (short written narratives) and quantitative (questionnaires with EQ-5D instrument) methods were used. Children who participated in the CD screening study were invited to write narratives at the time of the screening, before screening results were known, describing their experience with the screening (n=240). The EQ-5D instrument was used to measure and compare health-related quality of life reported by participants at the time of the screening and one year after the screening-detected participants received their diagnosis (screening-detected n=103, referents n=483). Those with screening-detected CD were also invited to write narratives one and five years after their diagnosis. In these narratives the adolescents described how it felt to be diagnosed with CD, how it felt to live with CD, and if they thought all children should be screened (one-year follow-up n=91, five-year follow-up n=72).

Results  Even though some children experienced fear and anxiety during the screening, overall they had, or were provided with, tools that allowed them to cope well with the screening. The health-related quality of life reported by those with screening-detected CD was similar before and one year after diagnosis (and similar to that of the referents). We also found that after five years of living with the diagnosis there had been maintenance and evolution in the beliefs and practices of these adolescents. Being detected through screening and the threat of complications impacted how they felt about the diagnosis, coped with the gluten-free diet, and what they thought about CD screening. Five years after the screening-detected diagnosis the adolescents have adjusted to the disease and adapted new habits and coping strategies to deal with the gluten-free diet. However, there are still those who doubt the accuracy and benefit of the diagnosis.

 

Conclusions  Our findings suggest that it is possible for participants to avoid excess anxiety during CD screening. However, there was not consensus among participants that being detected and treated had improved their health-related quality of life or that the immediate benefits outweighed the harm caused by being detected in this way. When considering mass screening, the affect on the participants is important to take into account and our findings shed light on some of the potential impacts a CD mass screening could have on participants.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2013. 89 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1597
Keyword
adolescents, celiac disease, children, EQ-5D, intervention, public health, narrative, screening, screening-detected
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-81689 (URN)978-91-7459-726-4 (ISBN)
Public defence
2013-11-15, Aulan, Care of Science Building (Vårdvetarhuset), Norrlands University Hospital (NUS), Umeå, 09:00 (English)
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Available from: 2013-10-24 Created: 2013-10-21 Last updated: 2015-04-29Bibliographically approved

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Nordyke, KatrinaMyléus, AnnaIvarsson, AnneliEmmelin, Maria

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