为有孩子接受基因检测转诊的家长提供支持：健康访视员的作用。

Barr Owen G, McConkey Roy

Institute of Nursing Research and School of Nursing, University of Ulster, Londonderry, UK.

J Adv Nurs. 2006 Apr;54(2):141-50. doi: 10.1111/j.1365-2648.2006.03803.x.

AIM

This paper reports a study of the views of health visitors in relation to their role in supporting parents of children referred for genetic investigations.

BACKGROUND

An increasing number of children are likely to be referred for genetic investigations as our understanding of genetic inheritance develops and a wider range of tests becomes available. Internationally, there are growing expectations that nurses will be able to discuss the referral and testing processes with parents, as well as facilitate informed decision-making. However, previous studies have highlighted the limited support received from staff in primary care services by parents of children referred for genetic investigation.

METHODS

A questionnaire survey of 345 health visitors was undertaken in 11 community health and social services trusts in Northern Ireland. Questionnaires were distributed at health visitor team meetings and returned in prepaid envelopes. Data collection occurred in 2003.

FINDINGS

Completed questionnaires were returned by 194 health visitors (56.2% response rate). Many were unsure of the location of their Regional Clinical Genetics Service and reported limited contact with these services. The majority of health visitors were not informed that children on their caseload had a forthcoming appointment, or that they had attended an appointment with a geneticist. Health visitors did not routinely visit parents of children referred for genetic investigation to discuss the appointment, and they reported limited confidence in supporting parents in relation to genetic investigations.

CONCLUSION

Improved communication links are needed with Regional Clinical Genetics Services and to ensure that health visitors are informed when children on their caseload have been referred for genetic investigation. In addition, steps need to be taken to increase the coordination of support to parents provided by health visitors and staff within regional genetic services.

目的

本文报告了一项关于健康访视员对于其在支持被转诊进行基因检测的儿童家长方面所扮演角色的观点的研究。

背景

随着我们对基因遗传的理解不断发展且可进行的检测种类增多，越来越多的儿童可能会被转诊进行基因检测。在国际上，人们越来越期望护士能够与家长讨论转诊和检测流程，并促进明智的决策制定。然而，先前的研究强调了被转诊进行基因检测的儿童家长在初级保健服务中从工作人员那里获得的支持有限。

方法

对北爱尔兰11个社区卫生和社会服务信托机构的345名健康访视员进行了问卷调查。问卷在健康访视员团队会议上分发，并通过预付邮资的信封回收。数据收集于2003年进行。

结果

194名健康访视员返回了完整的问卷（回复率为56.2%）。许多人不确定其所在地区临床遗传学服务机构的位置，并表示与这些服务机构的联系有限。大多数健康访视员并未被告知其负责病例中的儿童即将有预约，或者这些儿童已经预约了遗传学家。健康访视员通常不会去拜访被转诊进行基因检测的儿童的家长以讨论预约事宜，并且他们表示在支持家长进行基因检测方面信心有限。