Thompson Sue, Phillips David
PEALS Research Centre, Newcastle University, United Kingdom.
Qual Health Res. 2007 Nov;17(9):1292-303. doi: 10.1177/1049732307307748.
Unlike research on "associative" hard-to-reach populations, such as those at risk of AIDS, which has been subject to extensive methodological scrutiny, few studies have explored strategies for researching nonassociative hard-to-reach populations: those whose members do not normally have contact with other members. This article contributes toward rectifying this imbalance. The literature review includes issues of representativeness, use of membership lists or other centralized sources of information, innovative ways of gaining access to nonassociative population members, and an overview of multiple approaches. The authors then explore strategies adopted by one of them in recent studies of three such populations in the United Kingdom of people with spina bifida and hydrocephalus, advanced Parkinson's disease, and skeletal dysplasia resulting in very short stature. They consider previously unreported problems with using membership lists and discuss strategies for finding population members not in contact with others in the population or membership organizations or professionals.
与针对“关联性”难以接触到的人群(如艾滋病高危人群)的研究不同,这类研究已受到广泛的方法学审查,而很少有研究探讨针对非关联性难以接触到的人群的研究策略:即其成员通常不与其他成员接触的人群。本文有助于纠正这种不平衡。文献综述包括代表性问题、成员名单或其他集中信息来源的使用、接触非关联性人群成员的创新方法以及多种方法的概述。作者随后探讨了其中一位作者在英国近期对患有脊柱裂和脑积水、晚期帕金森病以及导致身材极矮的骨骼发育异常的三类此类人群的研究中所采用的策略。他们考虑了使用成员名单时以前未报告的问题,并讨论了寻找未与人群中的其他人、成员组织或专业人员接触的人群成员的策略。