A Participatory Research Approach: Designing Research with Vulnerable Women

Abstract

As many textbooks and studies describe, a woman's breast represents emotionally and symbolically her womanhood, sexuality, aesthetic appearance, feeding of her infant and feelings of love and motherhood. Not only is breast cancer the most frequent cancer in women, it has also been the most surveyed cancer so far for its emotional and psychological implications. During my PhD period of study, I was interested in understanding the health-related quality of life of women diagnosed with breast cancer in Romania and the United Kingdom. Previous studies reported contrasting results in terms of quality of life, due to various clinical and methodological issues. Among these, an important challenge was the use of proxies in order to generate research data on people with cancer. This case focuses on a participatory approach to research women with breast cancer. I closely look at how women with breast cancer can be involved as experts in the research design. Particular attention is paid to the process of empowerment through active participation in research and to the steps needed to be followed in order to collect data. The elements of this case are applicable to diverse areas of work, such as social work, nursing, psychology and health.

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