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囊性纤维化携带者孕前筛查项目实施中的可能性与障碍:一项焦点小组研究

Possibilities and barriers in the implementation of a preconceptional screening programme for cystic fibrosis carriers: a focus group study.

作者信息

Poppelaars F A M, van der Wal G, Braspenning J C C, Cornel M C, Henneman L, Langendam M W, ten Kate L P

机构信息

Department of Clinical Genetics and Human Genetics, VU University Medical Center, De Boelelaan 1117, PO Box 7057, NL-1007 MB, Amsterdam, The Netherlands.

出版信息

Public Health. 2003 Nov;117(6):396-403. doi: 10.1016/S0033-3506(03)00136-7.

DOI:10.1016/S0033-3506(03)00136-7
PMID:14522154
Abstract

OBJECTIVE

This qualitative study aimed to explore possibilities and barriers in the implementation of a nationwide preconceptional cystic fibrosis (CF) carrier screening programme.

METHODS

Sessions were held with two focus groups of CF patients and CF relatives, one focus group of people from the target population (couples planning a pregnancy), and two focus groups of potential providers (general practitioners (GPs) and municipal health service workers).

RESULTS

Important barriers in the implementation of a preconceptional CF carrier screening programme included the problem of reaching the target population, the heavy workload of GPs, the limited public knowledge about CF in general, and the absence of a preconceptional consultation setting. In general, there was a positive attitude among the participants towards CF carrier screening.

CONCLUSION

This study revealed some important barriers in the implementation of CF carrier screening programmes. More research is needed to specify and quantify the importance of the various barriers. Eventually, different intervention strategies should be included in an implementation plan to overcome the most important barriers in the organization and execution of screening.

摘要

目的

本定性研究旨在探讨在全国范围内实施孕前囊性纤维化(CF)携带者筛查计划的可能性和障碍。

方法

与两个由CF患者及其亲属组成的焦点小组、一个由目标人群(计划怀孕的夫妇)组成的焦点小组以及两个由潜在提供者(全科医生(GP)和市政卫生服务工作者)组成的焦点小组进行了讨论。

结果

实施孕前CF携带者筛查计划的重要障碍包括难以接触到目标人群、全科医生工作量大、公众对CF的总体了解有限以及缺乏孕前咨询服务。总体而言,参与者对CF携带者筛查持积极态度。

结论

本研究揭示了CF携带者筛查计划实施过程中的一些重要障碍。需要更多研究来明确和量化各种障碍的重要性。最终,应在实施计划中纳入不同的干预策略,以克服筛查组织和实施过程中的最重要障碍。

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