Chalmers K I, Luker K A, Leinster S J, Ellis I, Booth K
Helen Glass Centre for Nursing, University of Manitoba, Winnipeg, Manitoba, Canada R3T 2N2.
J Adv Nurs. 2001 Aug;35(4):497-507. doi: 10.1046/j.1365-2648.2001.01866.x.
The aim was to develop and pilot test a newly developed measure, The Information and Support Needs Questionnaire (ISNQ), for use with women with primary relatives with breast cancer.
BACKGROUND/RATIONALE: Breast cancer is a major risk to the health of women in the United Kingdom (UK). Increasingly, research is documenting women's needs for information and support, particularly at the time of diagnosis. However, to date there is little understanding of the information and support needs of women who have a family history of breast cancer. Contributing to the dearth of understanding of female relatives' needs is the lack of valid and reliable instruments for use in descriptive and intervention research with this population.
DESIGN/METHODS: The ISNQ and survey items documenting family history, sources of information and support for breast cancer risk, breast self-care practices, and other variables were pilot tested for the acceptability of the measures, appropriateness of the data collection methods, initial psychometric properties of the ISNQ, and time and financial costs of administration. Data were collected from 39 women living in the North-west of England who had primary relatives with breast cancer using mailed questionnaires and follow-up telephone interviews.
The items on the ISNQ were reported to be clear, acceptable to women and to yield relevant data. The psychometric properties of the new measure were satisfactory with a high reliability coefficient alpha. Descriptive findings indicate that women had moderate to high needs for information and support, but reported that these needs were not well met.
The results of this pilot are guiding the development of a larger study in which the information and support needs of women with a family history of breast cancer are explored.
本研究旨在开发并初步测试一种新的测量工具——信息与支持需求问卷（ISNQ），用于患有乳腺癌一级亲属的女性。
背景/理论依据：乳腺癌是英国女性健康的主要风险因素。越来越多的研究记录了女性对信息和支持的需求，尤其是在诊断时。然而，迄今为止，对于有乳腺癌家族史的女性的信息和支持需求了解甚少。导致对女性亲属需求缺乏了解的原因是，缺乏用于该人群描述性和干预性研究的有效且可靠的工具。
设计/方法：对ISNQ以及记录家族史、乳腺癌风险信息和支持来源、乳房自我护理实践及其他变量的调查项目进行了初步测试，以评估这些测量工具的可接受性、数据收集方法的适当性、ISNQ的初始心理测量特性以及管理的时间和财务成本。通过邮寄问卷和后续电话访谈，从居住在英格兰西北部的39名患有乳腺癌一级亲属的女性中收集数据。
ISNQ上的项目据报告清晰明了，女性能够接受，并能产生相关数据。新测量工具的心理测量特性令人满意，信度系数α较高。描述性结果表明，女性对信息和支持有中度至高需求，但报告称这些需求未得到很好满足。
本次初步测试的结果正在指导一项更大规模研究的开展，该研究将探索有乳腺癌家族史女性的信息和支持需求。
