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The everyday life of adolescent coeliacs: issues of importance for compliance with the gluten-free diet
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-3731-6565
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.ORCID iD: 0000-0002-5464-5686
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Public Health Sciences.ORCID iD: 0000-0001-8944-2558
Umeå University, Faculty of Social Sciences, Department of Food and Nutrition.
2008 (English)In: Journal of human nutrition and dietetics (Print), ISSN 0952-3871, E-ISSN 1365-277X, Vol. 21, no 4, 359-367 p.Article in journal (Refereed) Published
Abstract [en]

Background Noncompliance with the gluten-free diet is often reported among adolescents with coeliac disease. However, knowledge is limited regarding their own perspectives and experiences of managing the disease and the prescription of a gluten-free diet. The aim of this study was to explore how adolescents with coeliac disease perceive and manage their everyday lives in relation to a gluten-free diet. Methods in total, 47 adolescents with coeliac disease, divided into 10 focus groups, were interviewed. In the qualitative analysis, themes emerged to illustrate and explain the adolescents' own perspectives on life with a gluten-free diet. Results The probability of compliance with the gluten-free diet was comprised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of gluten-free food, insufficient social support and their perceived dietary deviance. Three different approaches to the gluten-free diet emerged: compliers, occasional noncompliers, and noncompliers. Each approach, as a coping strategy, was rational in the sense that it represented the adolescents' differing views of everyday life with coeliac disease and a prescription of a gluten-free diet. Conclusions Adolescents with coeliac disease experience various dilemmas related to the gluten-free diet. The study demonstrated unmet needs and implies empowerment strategies for optimum clinical outcomes.

Place, publisher, year, edition, pages
Wiley Blackwell , 2008. Vol. 21, no 4, 359-367 p.
Keyword [en]
adolescent, celiac disease, focus groups, gluten-free diet, patient compliance
National Category
Social Sciences Interdisciplinary Nutrition and Dietetics Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Food and Nutrition
Identifiers
URN: urn:nbn:se:umu:diva-19998DOI: 10.1111/j.1365-277X.2008.00867.xISI: 000258032000007PubMedID: 18754144OAI: oai:DiVA.org:umu-19998DiVA: diva2:207890
Available from: 2009-03-13 Created: 2009-03-13 Last updated: 2017-06-08Bibliographically approved
In thesis
1. Celiac disease in Swedish children and adolescents: variations in incidence and essentials of gluten-free eating with a youth perspective
Open this publication in new window or tab >>Celiac disease in Swedish children and adolescents: variations in incidence and essentials of gluten-free eating with a youth perspective
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Sweden has experienced a unique epidemic of celiac disease (CD) in children younger than 2 years of age. The epidemic was partly explained by changes over time in infant feeding and indicated a multifactorial aetiology.

In CD, a strict lifelong gluten-free diet (GFD) is crucial for health but noncompliance is often reported among adolescents. Knowledge is limited regarding their own perspectives and experiences of managing the disease and adhering to GFD.

Objectives To analyse the incidence of CD in epidemic and post epidemic birth cohorts, and explore and understand how adolescents with CD perceive and manage their everyday lives in relation to the GFD.

Methods A population-based incidence register of CD in children covering the entire nation from 1998 to 2003, and part of the country back to 1973. ESPGHAN diagnostic criteria for CD and NUTS classification of regions were used. Incidence rates for each year of diagnosis, age group, gender and region, and cumulative incidence by age for each birth cohort were calculated.

Ten focus groups were conducted with 47 CD adolescents aged 15-18 years. Transcribed interviews were analysed to illustrate and explain adolescents’ own perspectives concerning life with a GFD, and to search for recurrent stigma-related themes across the groups.

Results A considerable gap in the cumulative incidence of CD at comparable ages was demonstrated between birth cohorts of the epidemic and post-epidemic periods. The gap persisted during pre-school years, although it decreased somewhat with age. During the final years of follow-up there was again a gradual increase in incidence rate among children younger than 2 years of age. The childhood populations in ‘West Sweden’ and ‘Småland and the islands’ had a significantly higher incidence rate compared to ‘North Middle Sweden’ and ‘Stockholm’.

CD adolescents described an awareness of being different from others produced by meal appearance and the poor availability of gluten-free (GF) food. Eating in public had the effect of making an invisible condition visible and thereby creating a context for felt or enacted stigma. Maintaining invisibility avoided the negative consequences of stigma. The probability of compliance with the GFD was compromised by insufficient knowledge of significant others, problems with the availability and sensory acceptance of GF food, insufficient social support and their perceived dietary deviance. Three different approaches to the GFD emerged: compliers, occasional non-compliers, and non-compliers.

Conclusions The difference in CD risk between birth cohorts at comparable ages may suggest an opportunity for primary prevention. Based on post-epidemic incidence trends, the Swedish epidemic might not have been as unique as previously thought, even though its magnitude was striking. The regional variation in CD risk supports multifactorial aetiology. Continued efforts are warranted to define factors besides gluten exposure that modulate CD risk.

CD adolescents experience various dilemmas related to the GFD. It can produce stigma experiences in adolescence, and dietary compliance (or lack of) can be understood in terms of dealing with GFD concealment and disclosure. The increase in CD prevalence over time and unmet needs in young celiacs require resources to attain adequate levels of dietetic provision, regulated subsidies for covering additional costs for GF food, evidence-based practice, and increased general CD awareness for optimum clinical outcomes.

Place, publisher, year, edition, pages
Umeå: Kostvetenskap, 2008. 59 p.
Keyword
Adolescent, Celiac disease, Focus groups, Gluten-free diet, Incidence, Infant feeding, Patient compliance, Primary prevention, Social Constructionism, Stigma
National Category
Food Science
Research subject
Food and Nutrition
Identifiers
urn:nbn:se:umu:diva-1919 (URN)978-91-7264-650-6 (ISBN)
Public defence
2008-12-05, Hörsal D, Samhällsvetarhuset, Umeå Universitet, 901 87, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2015-11-04Bibliographically approved

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Olsson, CeciliaHörnell, AgnetaIvarsson, Anneli

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