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Food that makes you different: the stigma experienced by adolescents with celiac disease
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.
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
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2009 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 19, no 7, 976-984 p.Article in journal (Refereed) Published
Abstract [en]

For adolescents with celiac disease (CD), a gluten-free diet(GFD) is crucial for health, but compliance is problematic andnoncompliance is common even among those aware of the risks.To better understand their lives with the disease, Swedish CDadolescents were invited to take part in focus group discussions.Data were analyzed for recurrent stigma-related themes acrossthe groups. Adolescents described an awareness of being differentfrom others that was produced by meal appearance and the pooravailability of gluten-free food. The GFD often required discussionsand special requests, so eating in public had the effect ofmaking an invisible condition visible, and thereby creatinga context for felt or enacted stigma. Maintaining invisibilityavoided negative consequences of stigma, and other strategieswere used to reduce the costs of visibility. The results ofthe study show that the GFD can produce stigma experiences inadolescence, and that dietary compliance (or lack thereof) canbe understood in terms of dealing with GFD concealment and disclosure.

Place, publisher, year, edition, pages
Sage Publications , 2009. Vol. 19, no 7, 976-984 p.
Keyword [en]
adolescents, chronic illness, dietetics, focus groups, lived experience, social constructionism, stigma
National Category
Food Science
Research subject
Food and Nutrition
Identifiers
URN: urn:nbn:se:umu:diva-26934DOI: 10.1177/1049732309338722OAI: oai:DiVA.org:umu-26934DiVA: diva2:275138
Available from: 2009-11-03 Created: 2009-11-03 Last updated: 2017-12-12Bibliographically 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)
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Available from: 2008-11-14 Created: 2008-11-14 Last updated: 2015-11-04Bibliographically approved

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