The Mediation Of CAM In And By Cancer User Groups, Charities And Informal Networks In The UK & Pakistan
L218 25 2053
University of Leeds & Sir Ganga Ram Hospital, Lahore
Dr P Tovey, Dr S Mason, Dr K Atkin & Dr S Rashid
September 2002 - February 2005
Website
Abstract
Complementary and Alternative Medicine (CAM) is achieving an ever-higher profile in prosperous countries. There is strong evidence of its popularity amongst users (especially in cancer care) although it remains contentious amongst orthodox practitioners. Whilst operating within a very different social, cultural, historical and organizational context, "CAM" is a significant element of (cancer) healthcare in poorer countries. The under-researched nature of CAM is widely recognize. A trials-based pursuit of an evidence base is increasingly advocated. However, this agenda fails to recognize the importance of generating an understanding of social action in settings where evidence is interpreted. Moreover, much CAM sociology has focused on the "consumer" or the practitioner in isolation. This project will be the first in-depth study of how CAM is interpreted and utilized in the increasingly important settings of cancer user groups, charities and networks. It is unique in combining fieldwork in two very different countries - the UK and Pakistan. Our aim is to examine how these groups (and their varying memberships) are mediating and interpreting CAM, how this impinges upon professional-lay relations and patterns of inequality, and management of health and illness. In depth case studies will be conducted in both countries, Sites will be selected to reflect the diversity of relevant groups. The the mid point of the research we will reduce the number of sites so that we can pursue emerging empirical and theoretical issues in more depth. The project is particularly timely given the continuing expansion of CAM (in general and in cancer); the ad hoc nature of provision; the need for better informed health policy; the ongoing integration of CAM onto (cancer) user groups and charities' agendas; policy shifts to more "rounded" cancer care; and the pursuit of an evidence base for CAM.
Summary
Background
Complementary and Alternative Medicine (CAM) has achieved an exponential growth over the last two decades across prosperous countries. Advocates have argued that CAM is philosophically and practically innovative in that it challenges existing professional-patient relations, forms of intervention, and disease conceptualization itself. Crucially, it remains marginal to (though not entirely absent from) mainstream policy and provision; consequently, many interesting developments are occurring beyond established structures of medical dominance. In poorer countries the 'CAM phenomenon' exists within a very different historical, cultural and social location. Issues of rural/urban location, the cost and availability of formal healthcare, and the fusion of 'traditional' medicine with 'international' CAM provide a very specific background. CAMs are increasingly discussed as a therapeutic option for cancer care in the UK, and form a significant component of cancer management in Pakistan.
Research Design
There is evidence that cancer user groups, charities and broader informal networks are playing a central role in providing (and necessarily interpreting) information, constructing a role for CAM, and advocating or even providing therapies. Case study research (including observation, document analysis, formal and informal interviews) will be conducted in a number of such groups/networks in the UK and in Pakistan.
The aim of this research is to provide the first in depth study of the way in which such groups and networks engage with CAM in the UK and Pakistan, and to consider the significance of this for prevailing expert/lay relations; existing patterns of inequality in healthcare; and the personal, medical, and social management of cancer. In order to achieve this, the following research questions will be addressed:
- What is the nature of involvement with CAM in cancer patient groups, health charities and networks?
- What are the processes underlying decision making on CAM and the selection, interpretation and utilisation of information about it?
- To what extent and in what way do patient groups, charities and other networks act as advocates, gate keepers and providers of CAM?
- To what extent are practices of patient groups, charities and networks challenging prevailing inequalities in cancer care and in access to CAM?
- How do these processes vary between the UK and Pakistan?
- To what extent and in what way do prevailing and emerging structures and processes constitute innovation?
Policy and Academic Implications
While the sociology of CAM has, to date, included work on (or with) users, much of that research has tended to be individualised. We currently have little understanding of how CAM is mediated in and by groups. This work will help to fill that gap. The policy agenda on CAM is currently dominated by the pursuit of trials based evidence. However, this agenda tends to underplay or ignore the importance of generating an understanding of how that evidence will be interpreted and made use of in practice. We will seek to disseminate findings to a range of audiences - including policy makers in both the UK and Pakistan.
Contacts
Outputs
Books:
Tovey. P, Chatwin. J, and Ahmad. S. Complementary and alternative medicine and cancer care: an international analysis of grassroots integration. Routledge. (Co-authored work, commissioned and contract signed. Due to be completed in Dec 2005)
Papers:
Tovey. P, Chatwin. J, and Broom. A. (2005) Complementary and Alternative
Medicine (CAM), and Cancer care: Patient Groups, Informal Networks and Quality
of Life. European Journal of Public Health. 14. 4:107.
Chatwin. J, and Tovey. P. (2004) Complementary and Alternative Medicine (CAM), Cancer and Group Based Action. European Journal of Cancer Care. 13: 210-218.
Tovey. P. (2003) Group mediation of complementary and alternative medicine in cancer care in the UK and Pakistan. European Journal of Cancer Care.12: 374.
Tovey. P, Chatwin. J, and Ahmad. S. (under review) Towards an understanding of decision making on complementary and alternative medicine (CAM) use in poorer countries: the case of cancer care in Pakistan. Integrated Cancer Therapies.
Conference presentations etc:
Chatwin. J. (2004) CAM and Cancer Support Groups: UK and Pakistan. A presentation video on the current project produced for the School of Health Research Symposium. Leeds University.
Chatwin. J. and Tovey. P (2004) Two Sociological Studies on the use of CAM in Cancer Care. Poster presented at the Prince of Wale's Foundation for Integrated Health Research Symposium. London.
Tovey. P, Chatwin. J, and Broom. A. (2004) Complementary and Alternative Medicine (CAM) in Cancer Care: Patient Groups, Informal Networks, and Quality of Life. Poster presented at 12th Annual European Public Health Association Conference. Oslo Congress Centre, Oslo.
Tovey. P, and Chatwin. J. (2003) The Mediation of CAM in and by Cancer User Groups, Networks and Charities: UK and Pakistan. Paper presented at the International Conference of Qualitative Health Research. Guadalajara.
Chatwin. J. (2003) CAM and Cancer Support Groups. Primary Heath Care /
Public Health Group. School of Healthcare Studies. Leeds University.
Tovey. P. (2002). Social Worlds Theory and CAM: Applications of Empirical
Research in the UK and Pakistan. University of Hawaii.
Other dissemination:
During the course of the project, Tovey has developed further work in the sociology of CAM and cancer care with colleagues at the University of Campinas, Brazil. During one visit Tovey took part in a round table discussion / interview in which the ESRC funded project was discussed in detail
News
November 2003
Phil Tovey has just agreed to take over as the (joint) Editor-in-chief for the main CAM journal (Complementary Therapies in Medicine)
January 2003
Funder: Department of Health, £ 150 000
Duration: 30 months from May 2003
Confirmation of funding for the above study has recently been received. It can be seen as a partner study to the one funded under phase II of the IHT programme. Whereas the focus in the IHT study is on achieving an understanding of (user) group mediation of CAM, in the new study our attention centres more directly on individual decision making. Through semi structured interviews with patients at various stages of cancer, and by tracking the real time processes of a small number of participants (through diaries and so on) we will address issues such as influences on cancer patients relationship with CAM, their expectations of cancer care and how CAM fits in, and what it is that is particularly valued by CAM users.
Further details can be obtained from Philip Tovey (p.a.tovey@leeds.ac.uk) or from the project's research fellow, Nicola Manson (n.j.manson@leeds.ac.uk).