Patients as authors


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Christine Douglass1, Miriam Dwek1, Joram ten Brink1
1University of Westminster, London, UK

Background

This research looks beyond clinical models of eliciting patient narratives and applies the theory & methodology of ‘shared visual anthropology’ to experiences of breast cancer.Visual anthropology has a tradition of engaging in discourses of non western cultures. Questioning the power relationships in representational practices in this discipline led to the emergence of a shared, reflexive ethic of filmmaking. This collaborative praxis has been extended to produce a series of films that are authored by breast cancer patients outside of the clinical setting.

Method

Nine women, 9 - 36 months post breast cancer diagnosis, were recruited through breast cancer charities and support groups. At the time of recruitment all of the patients had finished active treatment. Written consent was obtained from all study participants.

The patients ranged from 29 to 52 years of age, were from different ethnic backgrounds and diverse locations across England and Wales. Each patient was provided with a video-camera, trained in its use and invited to film freely over a period of 6 months.Support throughout the process was provided through frequent, regular meetings with the researcher. Compliance with the study was excellent. The research material is currently being edited in collaboration with the patients.

Results

The initial outcome of the study indicates that participatory filmmaking has a therapeutic value.The preeminent theme emerging relates to tamoxifen use but it is the diversity of experiences and the individual ways of expressing these experiences that dominate provisional analysis.

Conclusion

The films are being prepared for a gallery installation and documentary. It is proposed that the narratives produced can assist multi-disciplinary teams in cancer care, help other patients and their families, as well as providing therapeutic benefit for participants. A wider application of the methodology is suggested.