Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire

Aims of the study. 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. Findings. 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. Conclusions. 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.