Mass screening for celiac disease from the perspective of newly diagnosed adolescents and their parents: A mixed-method study

BMC Public Health

Research Article

Annelie Carlsson¹  Anneli Ivarsson²  Maria Emmelin³  Anna Rosén⁴  Solveig Hammarroth⁵  Eva Karlsson⁶ 

[1]Department of Clinical Sciences, Pediatrics, Lund University, Lund, Sweden

[2]Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden

[3]Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden

[4]Department of Clinical Sciences, Social Medicine and Global Health, Lund University, Malmö, Sweden

[5]Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden

[6]Department of Medical Biosciences, Medical and Clinical Genetics, Umeå University, Umeå, Sweden

[7]Norrtälje Hospital, Pediatrics, Norrtälje, Sweden

[8]Växjö Hospital, Pediatrics, Växjö, Sweden

关键词: Celiac Disease;    Focus Group Discussion;    Mass Screening;    Celiac Disease Patient;    Qualitative Content Analysis;   

DOI  :  10.1186/1471-2458-11-822

 received in 2011-03-14, accepted in 2011-10-21,  发布年份 2011

来源: Springer

【 摘 要 】

BackgroundMass screening for celiac disease (CD) as a public health intervention is controversial. Prior to implementation, acceptability to the targeted population should be addressed. We aimed at exploring adolescents' and parents' experiences of having the adolescents' CD detected through mass screening, and their attitudes towards possible future mass screening.MethodsAll adolescents (n = 145) with screening-detected CD found in a Swedish school-based screening study, and their parents, were invited to this study about one year after diagnosis. In all, 14 focus group discussions were conducted with 31 adolescents and 43 parents. Written narrative was completed by 91 adolescents (63%) and 105 parents (72%), and questionnaires returned by 114 parents (79%). Data were analyzed using qualitative content analysis. In addition, narratives and questionnaire data allowed for quantified measures.ResultsAdolescents and parents described how they agreed to participate "for the good of others," without considering consequences for themselves. However, since the screening also introduced a potential risk of having the disease, the invitation was regarded as "an offer hard to resist." For the majority, receiving the diagnosis was described as "a bolt of lightning," but for some it provided an explanation for previous health problems, and "suddenly everything made sense." Looking back at the screening, the predominant attitude was "feeling grateful for being made aware," but some adolescents and parents also expressed "ambivalent feelings about personal benefits." Among parents, 92% supported future CD screening. The most common opinion among both adolescents and parents was that future CD mass screening should be "a right for everyone" and should be offered as early as possible. However, some argued that it should be "only for sufferers" with symptoms, whereas others were "questioning the benefits" of CD mass screening.ConclusionsAlthough the incentives to participate in the CD screening were partly non-personal, and diagnosis was met with surprise, adolescents and parents felt grateful that they were made aware. They welcomed future CD screening, but suggested that it should be conducted earlier in life. Thus, CD mass screening seemed acceptable to most of those who were diagnosed and their parents.

【 授权许可】

CC BY   
© Rosén et al; licensee BioMed Central Ltd. 2011