基于焦点小组数据开发亨廷顿舞蹈症家庭关注问题及策略调查问卷。
Development of the Huntington disease family concerns and strategies survey from focus group data.
作者信息
Williams Janet K, Barnette J Jackson, Reed David, Sousa Valmi D, Schutte Debra L, McGonigal-Kenney Meghan, Jarmon Lori, Phillips Emily, Tripp-Reimer Toni, Paulsen Jane S
机构信息
College of Nursing, University of Iowa, Iowa City, IA 52242, USA.
出版信息
J Nurs Meas. 2010;18(2):83-99. doi: 10.1891/1061-3749.18.2.83.
Health concerns and management strategies among families of young and middle-age adults with Huntington's disease (HD) are unknown. This study developed and tested psychometric properties of the Huntington Disease Family Concerns and Strategies Survey (HDFCSS). Focus group data from 91 adult family members were used to develop content. Content analysis yielded four domains that were transferred into Personal, Person With HD, Community Health Care Services, and Strategies scales. Focus group data, expert validation, and cognitive interviews demonstrated survey content validity. Cronbach's alpha internal consistency coefficients for the scales were 0.83 or above. The measure can be used to generate reliable and valid data to identify adult family members' health-related concerns and management strategies for themselves and persons with HD.
患有亨廷顿舞蹈症（HD）的中青年成年人家庭中的健康问题及管理策略尚不清楚。本研究开发并测试了亨廷顿舞蹈症家庭问题与策略调查问卷（HDFCSS）的心理测量特性。来自91名成年家庭成员的焦点小组数据被用于制定内容。内容分析产生了四个领域，这些领域被转化为个人、HD患者、社区医疗服务和策略量表。焦点小组数据、专家验证和认知访谈证明了调查内容的有效性。各量表的克朗巴赫α内部一致性系数均在0.83及以上。该测量方法可用于生成可靠有效的数据，以识别成年家庭成员自身以及HD患者的健康相关问题和管理策略。
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