| 1. |
- Kautto, Ethel, 1966-, et al.
(författare)
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An on-going gendered endeavour in silence: young women struggling with celiac disease
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Women with celiac disease are in the literature described as feeling exposed to negative emotions and experiences related to the treatment of celiac disease - the gluten-free diet. In order to explore the daily experiences of being diagnosed to celiac disease we interviewed seven Swedish young women diagnosed to celiac disease by screening in early adolescence. The semi structured interviews were analysed inductively by using content analysis. The analysis showed that the young women continued to strive with their treatment and their relations toward others, even years after diagnosis. The young women found themselves in an environment where their strict adherence to the dietary treatment was an obstacle and could prevent the feeling of connectedness. We argue that the emphasized/normative femininity that these young women relate to complicates their daily life diagnosed with celiac disease.
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| 2. |
- Kautto, Ethel, et al.
(författare)
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Living with celiac disease : norms of femininity and the complications of everyday life
- 2017
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Ingår i: International Journal of Celiac Disease. - : Science and Education Publishing. - 2334-3427. ; 5:3, s. 115-124
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Tidskriftsartikel (refereegranskat)abstract
- Women with celiac disease are often described as being exposed to negative emotions and experiences related to the treatment of celiac disease, the gluten-free diet. To explore the daily consequences of diagnosis and their daily experiences of living with celiac disease, interviews were conducted with seven Swedish young women who had been diagnosed with celiac disease by screening in early adolescence. The semi-structured interview transcripts were content analysed using a gender perspective. The analysis showed that these young women`s daily experiences were coloured by the conjunction of their dietary treatment, their social relationships, and social norms. This means that recurrent food situations often clash with the normative constructions of femininity and social norms of eating with an adverse effect on dietary compliance.
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| 3. |
- Kautto, Ethel, et al.
(författare)
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Living with celiac disease seen from a male perspective
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Men diagnosed with celiac disease are in earlier scientific studies known to be less troubled by their experiences of living with disease than women with celiac disease. Previous studies, concentrating on men with celiac disease have been mostly quantitative, and the studies has dealt with physiology and pathology. The aim of this study was to give voice to young men with screening-detected celiac disease and to highlight the situations that they encounter in their daily lives five years after the screening. Seven Swedish young men were interviewed. They had been diagnosed with celiac disease as 12-13 years-olds through a large Swedish school based celiac screening-study. The semi-structured interviews were analyzed from a gender perspective using content analysis. The findings resulted in a main theme, conquering the disease and becoming a man, which was underpinned by several themes and sub-themes. The analysis showed that the young men’s experiences of living with celiac disease in their daily life, largely depended on their use of characteristics known to be in accordance with dominating masculinity; such as being self-assured, demanding, and behaving authoritative. In food situations, when the young men had the ability to make use of such characteristics in their informal group, they experienced much less negative aspects of the disease. If the young men did not have a position in their informal group where they could develop those features, their situation was expressed as being tough, they were bullied and withdrew from social meals. It seemed important for the young men to dissociate themselves from being seen as a person who had a life-long chronic disease.
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| 4. |
- Kautto, Ethel, 1966-, et al.
(författare)
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Seeking a new normality : masculinity, interaction and a gluten free diet
- 2016
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Ingår i: International Journal of Celiac Disease. - 2334-3486. ; 4:4, s. 138-145
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Tidskriftsartikel (refereegranskat)abstract
- From earlier studies, men diagnosed with celiac disease are known to be less troubled by their experiences of living with the disease than are diagnosed women. Previous studies, concentrating on men with celiac disease have been mostly quantitative, and have a bio-medical emphasis. The aim of this study was to explore the social experience of young men with screening-detected celiac disease and to highlight daily life situations five years after diagnosis. Seven young men, diagnosed with celiac disease when they were 13 years-olds through a large Swedish school-based celiac screening-study, were interviewed. The semi-structured interviews were analyzed from a gender perspective which resulted in three themes; being subjected to changes, striving for normality and emphasizing commitment. These were underpinned by several sub-themes. The young men dissociated themselves from being seen as a person with a life-long chronic disease. The analysis also showed that the young men’s daily experiences of living with celiac disease largely depended on their use of characteristics known to be associated with masculinity: such as being self-assured, demanding, and behaving authoritatively. In food situations, where the young men had the ability to make use of such characteristics in their informal group, they experienced fewer negative aspects of the disease. If the young men did not hold a strong position in their informal group, their situation was insecure and vulnerable and this could lead to avoidance of contacts and social meal situations.
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| 5. |
- Kautto, Ethel, et al.
(författare)
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What happens to food choices when a gluten-free diet is required? : A prospective longitudinal population-based study among Swedish adolescent with coeliac disease and their peers
- 2014
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Ingår i: Journal of Nutritional Science. - : Cambridge University Press. - 2048-6790. ; 3:e2
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Tidskriftsartikel (refereegranskat)abstract
- A dietary survey was performed during a large screening study in Sweden among 13-year-old adolescents. The aim was to study how the intake of food groups was affected by a screening-detected diagnosis of celiac disease (CD) and its gluten-free (GF) treatment. Food intake, was reported using a food frequency questionnaires (FFQ) and intake reported by the adolescents who was screened to CD was compared with the intake of two same-aged referent groups: i) adolescents diagnosed to CD prior screening and ii) adolescents without CD.. The food intake groups were measured at baseline before the screening-detected cases were aware of their CD, and 12-18 months later.The result showed that the food intakes are affected by a screen detected CD and its dietary treatment. Many flour-based foods were reduced such as pizza, fish fingers, and pastries. The result also indicated that the bread intake was lower before the screened diagnosis compared to the other studied groups, but increased afterwards. Specially manufactured GF-products (e.g. pasta and bread) were frequently used in the screened CDgroup after changing to a GF-diet. Our results suggest that changing to a GF-diet reduces the intake of some popular foods, and the ingredients on the plate are altered, but this do not necessarily include a change of food groups. The availability of manufactured GF-replacement products makes it possible for adolescents to keep many of their old food habits when diagnosed with CD in Sweden.
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| 6. |
- Olsson, Cecilia, et al.
(författare)
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Difference in celiac disease risk between Swedish birth cohorts suggests an opportunity for primary prevention
- 2008
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Ingår i: Pediatrics. - : American Academy of Pediatrics (AAP). - 0031-4005 .- 1098-4275. ; 122:3, s. 528-34
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Sweden experienced a unique epidemic of celiac disease in children <2 years of age. The epidemic was partly explained by changes in infant feeding over time and indicated a multifactorial pathogenesis. The main aim of this study was to analyze celiac disease risk in epidemic and postepidemic birth cohorts up to preschool age, to explore further the opportunity for primary prevention. METHODS: A population-based incidence register of celiac disease in children covering the entire nation from 1998 to 2003 and part of the country back to 1973 was analyzed. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition diagnostic criteria for celiac disease were used. The annual incidence rate for each age group and the cumulative incidence according to age for each birth cohort were calculated. RESULTS: A considerable difference in cumulative incidences of celiac disease at comparable ages was demonstrated between birth cohorts from the epidemic and postepidemic periods. The difference persisted during the preschool years, although it decreased somewhat with age. During the last years of the follow-up period, there was again a successive increase in incidence rate among children <2 years of age. CONCLUSIONS: The difference in celiac disease risk between birth cohorts at comparable ages suggests an opportunity for primary prevention. This highlights the importance of further exploring the role of infant feeding and exogenous factors besides dietary gluten that might initiate or prevent disease development. Moreover, on the basis of postepidemic incidence trends, we speculate that the Swedish epidemic might not have been as unique as thought previously, although its magnitude was striking.
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| 7. |
- Olsson, Cecilia, 1963-, et al.
(författare)
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Food that makes you different : the stigma experienced by adolescents with celiac disease
- 2009
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Ingår i: Qualitative Health Research. - : Sage Publications. - 1049-7323 .- 1552-7557. ; 19:7, s. 976-984
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Olsson, Cecilia, 1963-, et al.
(författare)
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Regional variation in celiac disease risk within Sweden revealed by the nationwide prospective incidence register.
- 2009
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Ingår i: Acta Paediatrica. - : Wiley. - 0803-5253 .- 1651-2227. ; 98:2, s. 337-342
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To determine if there is any regional celiac disease (CD) risk variation in the Swedish childhood population. METHODS: Prospective nationwide Swedish incidence register of CD in children 0-15 years of age, with the present analysis covering the period from 1998 to 2003. ESPGHAN diagnostic criteria for CD were used. Regions were classified according to the Nomenclature of Territorial Units for Statistics. The incidence rate for each region, gender, age group and year of diagnosis was calculated. RESULTS: A regional variation in CD risk was demonstrated. The childhood populations in 'West Sweden' and 'Småland and the islands', situated in the southern part of the country, had a significantly higher incidence rate compared to in 'North Middle Sweden' and 'Stockholm', situated in the central part. This regional variation was not explained by variations in risk by gender, age at diagnosis or year of diagnosis. CONCLUSION: The Swedish regional variation in CD risk supports multifactorial disease aetiology. Continued efforts are warranted to define factors, besides gluten exposure, that modulate CD risk.
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| 9. |
- Olsson, Cecilia, et al.
(författare)
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The everyday life of adolescent coeliacs : issues of importance for compliance with the gluten-free diet
- 2008
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Ingår i: Journal of human nutrition and dietetics (Print). - : Wiley Blackwell. - 0952-3871 .- 1365-277X. ; 21:4, s. 359-367
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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