Standing Ovation – Performing Social Science Research About Cancer

By R Gray and C Sinding, Altamira Press, Rowman & Littlefield Publishers, 2002, HB, $90.00, 160 pp. ISBN 0-7591-0145-0 + 80 min VHS; PB $34.95, 160 pp. ISBN 0-7591-0146-9 + 80 min VHS ‘Standing Ovation’ is the account of a 4-year project initiated by a group of investigators wanting to disseminate research results in a way more directly accessible to those whom these results concern. The project was initiated by well-established investigators from the Psychosocial and Behavioural Research Unit of Toronto's main cancer hospital, Sunnybrook Regional Cancer Unit. In the book the development of the two theatre plays based on a qualitative study among cancer patients is described. The reception of these plays and their effectiveness as a means of research dissemination are described from the perspective of the participants in the endeavour. Finally, the methodological background, i.e. the grounding of the approach in ethnographic theory, is explained. The book comes with a video showing the eventual performance of ‘Handle with care’, a play about the experience of metastatic breast cancer patients, and ‘No big deal?’ a play about the experiences of prostate cancer patients and their partners. The investigators were not aiming for traditional academic impact factors. They choose to develop their study rather with, instead of about, patients with cancer. This, in my view, is an original and courageous attempt to make patient-centred research and its results more readily available to those whose concerns really are at stake. Oncologists were interviewed and focus groups were organized with patients and their partners. Based on the data from these, scripts were developed together with professional actors and an artistic director including some (metastatic) cancer patients. The plays were performed in hospitals and in public places where patients and their nearest could gather. Thus, the authors could evoke in a much more direct way than any research paper, the emotions underlying the process of getting cancer and coping with the disease. The aim was to reach caregivers and those personally involved and help them understand reactions to the disease and ways of adapting to being ill. The process of developing the dramas is impressively described: the confrontation of those personally affected and those having a professional role; the breaking down of taboos within the group; the sharing of emotions leading to a very personal although professional ‘product’; the way ultimate seriousness can be combined with humour and laughter. The method of performance ethnography, linked to qualitative research methodology, is described in one chapter. It is said to be one in which ‘performance scientists translate field notes and field texts in a literal way, maintaining a deep commitment to the data gathering site and its original meaning’ (p. 15). In the verbatim theatre, substantial elements of the drama consist of original transcripts. The actors must then internalize the material at a subjective level: as it were to ‘absorb the experience shared by the women in the focus groups’, thus making it a ‘lived experience’. The authors describe in a personal manner how the script was developed, the way different parties were involved, the information needed and the dilemmas that occur. They give an account of their own having to confront their public: the reaction of professionals and patients and also their funding bodies. The authors write about the difficulty of launching the second project on prostate cancer after the intense experience that the first turned out to be. They finally tell how the parties involved got very personally connected in the process of drama development and performance. They then look back, each participant from their own perspective, on the experience of travelling in a national tour through the country, for example, after one of the players has experienced disease progression and has difficulty in remaining involved in the play. The authors of Standing Ovation must be complimented for a very personal, honest and thoughtful account of what they went through: fears and concerns, joys and victories, ambivalence and uncertainties, struggles and unclarities, nearness and loyalty. It is clear that it was an important experience for them. This book will interest those readers who want to understand in a personal manner what metastatic breast cancer patients go through and how they can cope although suffering from an incurable disease. The book will be even more interesting for those researchers who want to leave the common path of publishing results in traditional academic journals to go nearer to those their research is concerned with.

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