Black R B, Weiss J O
Columbia University School of Social Work, New York, NY 10025.
Am J Hum Genet. 1989 Oct;45(4):647-54.
This research sought information about the services provided by genetic support groups, their members' experiences in obtaining genetic and related services, and members' recommendations for improving services. Results from a survey of 43 directors of genetic support groups showed that these organizations not only provide their members with a wide range of informational and supportive services but also address the need for education of both the public and health professionals about genetic disorders. A second survey of 931 members of genetic support groups found that, although they obtained genetic information from a variety of professional and informal sources, many of them experienced barriers to obtaining sufficient genetic information. Respondents called for professionals to improve their interpersonal skills in working with clients and to assist families in obtaining a wider variety of services. On the basis of these findings, a service model and priorities are proposed to bring together genetic specialists, community professionals, and genetic support groups for the delivery of comprehensive services to individuals and families with genetic disorders.
本研究旨在获取有关基因支持团体所提供服务的信息、其成员在获取基因及相关服务方面的经历，以及成员对改善服务的建议。对43位基因支持团体负责人的调查结果显示，这些组织不仅为其成员提供广泛的信息和支持服务，还满足了向公众和卫生专业人员开展基因疾病教育的需求。对931位基因支持团体成员的第二项调查发现，尽管他们从各种专业和非正式渠道获取基因信息，但其中许多人在获取足够的基因信息方面遇到了障碍。受访者呼吁专业人员提高与客户合作时的人际交往能力，并协助家庭获得更广泛的服务。基于这些发现，提出了一种服务模式和优先事项，以便将基因专家、社区专业人员和基因支持团体聚集在一起，为患有基因疾病的个人和家庭提供全面服务。
