UK Pakistani views on the adverse health risks associated with consanguineous marriages
UK Pakistani views on the adverse health risks associated with consanguineous marriages
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DOI：
10.1007/s12687-015-0214-8
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发表时间：
2015-10-01
影响因子：
1.9
通讯作者：
Randhawa, Gurch
中科院分区：
文献类型：
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作者：
Ajaz, Mubasshir;Ali, Nasreen;Randhawa, Gurch
这是一项定性研究，探讨成员的看法，从巴基斯坦/克什米尔社区生活在卢顿，英国，对不利的健康风险与近亲结婚。卢顿的死产率和婴儿死亡率高于全国平均水平，现有证据表明，这些较高的比率可能与高度血缘关系的人口（如巴基斯坦/克什米尔族裔群体）的血缘关系（特别是第一代表亲婚姻）有关。这项定性研究包括9个焦点小组和10个一对一的深入访谈（n=58），成员来自巴基斯坦/克什米尔社区在卢顿在2012年。录音文字记录进行了分析，使用框架分析。新出现的主题包括知识有限、反对证据和需要一种对文化更敏感的卫生服务方法。焦点小组和访谈讨论的结果表明，参与者对遗传风险的理解有限且各不相同，并表明社区内缺乏关于遗传风险的讨论。他们还反对可能将近亲结婚与婴儿死亡率、死胎或导致残疾的遗传疾病联系起来的证据。与会者强调，需要在文化上敏感和在当地建立有关遗传风险和服务的信息服务。这些研究结果可用于解决卢顿和其他地方较高的婴儿死亡率和与较高的近亲结婚率相关的不利健康影响，通过伙伴关系的方法，改善目前的服务，并发展文化上适当的服务。
This is a qualitative study exploring the perceptions of members from the Pakistani/Kashmiri community living in Luton, UK, on the adverse health risks associated with consanguineous marriages. Rates of stillbirths and infant mortality are higher than the national average in Luton and the existing evidence base suggests that these higher rates may be associated with consanguinity (especially first cousin marriages) in highly consanguineous populations, such as the Pakistani/Kashmiri ethnic group. This qualitative study included 9 focus groups and 10 one to one in- depth interviews (n=58) with members from the Pakistani/Kashmiri community in Luton during 2012. Audio-recorded transcripts were analysed using framework analysis. Emerging themes included a limited knowledge, opposition to evidence and need for a more culturally sensitive health services approach. Findings from the focus group and interview discussions indicated that participants had a limited and varied understanding of genetic risk and indicated a lack of discussion within the community regarding genetic risk. They also opposed evidence that may link consanguineous marriages with infant mortality, stillbirth or genetic disorders that led to disability. The participants stressed the need for culturally sensitive and locally constructed services for information on genetic risk and services. These findings may be used to address higher rates of infant mortality and adverse health impacts associated with higher rates of consanguinity in Luton and elsewhere, through a partnership approach, improve upon current services and develop culturally appropriate services.