Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden.
BMC Public Health. 2011 Oct 21;11:822. doi: 10.1186/1471-2458-11-822.
Mass 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.
All 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.
Adolescents 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.
Although 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.
作为公共卫生干预措施，对乳糜泻（CD）进行大规模筛查存在争议。在实施之前，应解决目标人群的可接受性问题。我们旨在探讨青少年在大规模筛查中发现 CD 的经历，以及他们对未来可能进行的大规模筛查的态度。
在一项瑞典基于学校的筛查研究中，所有筛查发现的 CD 青少年（n=145）及其父母均被邀请参加本研究。共进行了 31 名青少年和 43 名父母的 14 个焦点小组讨论。91 名青少年（63%）和 105 名父母（72%）完成了书面叙述，114 名父母（79%）返回了问卷。使用定性内容分析对数据进行分析。此外，叙述和问卷数据允许进行量化测量。
青少年和父母描述了他们如何同意“为了他人的利益”参与筛查，而不考虑对自己的后果。然而，由于筛查也引入了患病的潜在风险，因此邀请被视为“难以抗拒的提议”。对大多数人来说，接受诊断被描述为“晴天霹雳”，但对一些人来说，这为之前的健康问题提供了解释，“突然间一切都有了意义”。回顾筛查，主要态度是“庆幸被发现”，但有些青少年和父母也表达了对个人获益的“矛盾情绪”。在父母中，92%的人支持未来的 CD 筛查。青少年和父母最常见的观点是，未来的 CD 大规模筛查应该“人人享有权利”，并应尽早提供。然而，一些人认为它应该只针对有症状的“患者”，而另一些人则对 CD 大规模筛查的“好处”表示质疑。
尽管参与 CD 筛查的动机部分是非个人的，且诊断令人惊讶，但青少年和父母都感到庆幸自己被发现了。他们欢迎未来的 CD 筛查，但建议应在生命早期进行。因此，大多数被诊断的青少年及其父母都对 CD 大规模筛查表示认可。
