Mason P J, Olson R A, Myers J G, Huszti H C, Kenning M
J Pediatr Psychol. 1989 Sep;14(3):341-55. doi: 10.1093/jpepsy/14.3.341.
Informational needs of hemophiliacs must first be assessed to develop effective educational and prevention programs. A survey of 132 hemophilia patients and family members was conducted to determine the information needs, the preferred source of information and the patients' knowledge of AIDS. Results indicated that the major source of information for the patients was the media; the preferred source was the hemophilia treatment center. Most patients wanted more information about the treatment of AIDS and how to cope with the stresses of AIDS. Although patients indicated that they had received sufficient information about the sexual transmission of AIDS, answers to knowledge questions indicated important misconceptions. Results are discussed with respect to the development of educational and prevention programs for hemophiliacs and their families.
必须首先评估血友病患者的信息需求，以便制定有效的教育和预防方案。对132名血友病患者及其家庭成员进行了一项调查，以确定他们的信息需求、首选的信息来源以及患者对艾滋病的了解情况。结果表明，患者的主要信息来源是媒体；首选来源是血友病治疗中心。大多数患者希望获得更多关于艾滋病治疗以及如何应对艾滋病压力的信息。尽管患者表示他们已获得关于艾滋病性传播的足够信息，但知识问题的答案显示出一些重要的误解。针对为血友病患者及其家庭制定教育和预防方案，对结果进行了讨论。
