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Editorial: Successful Australia-India Cancer Research Program Expands to Bring Benefits to other Diagnostic Groups

Issue: Vol.9, No.1 - January 2010

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Article Type: Editorial

A direct outcome of the Australia-Asia publication "Austral-Asian Journal of Cancer"(www.ajcancer.ipp-shr.cqu.edu.au) has been the establishment of the Australia-India Research Program, a collaborative initiative between the "International Program of Psycho-Social Health Research" (www.ipp-shr.cqu.edu.au) and "International Research Promotion Council" (www.irpc.org). The program focus is on the human experience of serious illness with a vision to developing holistic strategies to assist patients, their families and the professionals who care for them. Initial success has been in research exploring cross-cultural issues in palliative care for cancer patients, now completed and published (McGrath et al., 2009). The research not only affirms the benefits in cross-cultural work but showcases the positive outcomes that can be achieved by international collaboration in psychosocial research. Importantly, this psychosocial cancer research is a role model for similar psychosocial research in other diagnostic groups as demonstrated by the recent expansion of the program to include work on HIV/AIDS. As the following discussion illuminates, though diagnostically different HIV/AIDS, like cancer, has many significant psychosocial issues that need to be addressed.

Two decades into the global HIV/ AIDS epidemic there is no cure and a high fatality rate. The disease is as much a social phenomena as a biological disease associated with fear, stigma and discrimination. The introduction of Anti-retroviral Therapy (ART) has prolonged life expectancy transforming HIV infection into a long-term chronic disease. Prevention of transmission, quality of life issues, access to affordable medical treatment, addressing community attitudes and misconceptions, and the need for ongoing social support to patients and their families have emerged as key health care issues in developing countries.

In India, for example, estimates are of 2.5 HIV/AIDS infected persons (NAC0 2006) which has prompted the development and implementation of a national response. In 2007 the Indian Government launched its National AIDS Control Plan III, the third stage of a national strategy employing a decentralised response to halt and reverse transmission rates, increase treatment, care and support, and surveillance. The strategy has been hampered by pervasive poverty, low levels of education, and high gender stratification (Bloom et al 2007). Women are more disadvantaged than men when coping with the medical and psycho-social impacts of the disease. They have less access to medical treatment, less capacity and knowledge to engage in transmission prevention behaviours, and are often expulsed from family and social support resulting in greater isolation. Research highlights that the impact of the disease on women's health is not well understood, and calls for more gender sensitive approaches and prevention programs, and multi-sectorial health care programs (Bloom et al 2007; Majumdar 2004; Miles et al 2001; Subramanian et al 2009).

Community Care Centres (CCCs) are an integral part of a suite of new initiatives and services established by the Indian Government under its National Aids Control Program (II and III) to address the transmission, treatment and support of HIV/AIDS nationally. The CCCs have been progressively rolled out across the country in the last few years. There are currently 122 CCCs providing services with the full complement of 350 expected to be operational nationally by 2012. They are administered in each state by local non-government organisations and are overseen by the State AIDS Control Societies (SACS). The CCCs are staffed by a variety of health care practitioners including nurses, doctors, counselors, educators, outreach and auxiliary workers. They provide a range of community based services including medical treatment, short-stay bed care, social support, counseling, referral, and linkages to the Anti-retroviral Centres.

Research evidence shows that health care practitioners play a central role in the provision of services to people living with HIV/AIDS (PLWA) including medical, nursing, counseling, education and home support (Majumdar 2004; Mignone et al 2007). In conjunction with the availability of affordable medical treatment, psycho-social support is vital in achieving a good quality of life for PLWA (Solomon 2009; Subramanian et al 2009; Tarakeshwar et al 2007). Health care practitioners at the CCCs are the primary providers of services to PLWA. Yet, compared to patient population research, far less research has been conducted with health care practitioners. Where research has been done it has focused on practitioner competence, transmission fears, and the place of traditional medicine (Chomat et al 2009; Mignone et al 2007; Kielmann et al 2005).

The International Program of Psycho-Social Health Research (IPP-SHR) in conjunction with the International Research Promotion Council (IRPC) is currently engaged in a study to explore the psycho-social health care needs for women attending the newly established Community Care Centres in the southern Indian state of Kerala. Outcomes from the study are anticipated to identify the specific needs of women patients and their families, and provide some commentary of the existing approaches and procedures and how these could be adjusted to better meet patient needs.

The study will provide some of the first qualitative research findings to be obtained from the Community Care Centres about the specific health care needs of women. It will do this by engaging health care practitioners in semi-structured interviews on what they have observed and encountered in their practice. The perspectives of health care practitioners regarding these issues have not previously been reported. This project resonates with the strategies of the Indian Government, as outlined in the National AIDS Control Program III, to utilize both local and national evidence-based data to plan and implement care and support services.

Researchers continue to search for a cure and vaccination for HIV/AIDS. In this environment prevention, addressing barriers to treatment and increased life expectancy have emerged as significant international issues. Collaborative research projects such as the one between IPP-SHR and IRPC have the potential to contribute to these issues in several ways. These include the capacity of the findings to shape efforts to respond to the psycho-social impacts of HIV/AIDS in developing countries experiencing similar social, psychological, cultural, and economic inhibitors. The project also has the potential to map and model the processes and requirements necessary for successful collaborative research across research institutes and countries. A sometimes overlooked but pivotal component is the need for a mutual commitment to the betterment of humanity by all members of the research team that is reflected in both the desired outcomes for the participant community and a process of ethical and respectful engagement between all parties. IPP-SHR and IRPC have invested considerable time into this aspect of the process to date.

Conclusion
Cancer research has intrinsic and direct benefits for patients, their carers and the health professionals who provide treatment and supportive care. As this discussion demonstrates, the positive contribution from psychosocial research is that it can extend beyond oncology to provide a role model for other diagnostic groups. Although initiated as psycho-oncology with an exclusive concern with cancer patients, psychosocial research is now a broad discipline that creates links across cultures, continents and diagnostic groups.

REFERENCES
* Bloom, S., & Griffiths, P. (2006). Female autonomy as a contributing factor to women's HIV-related knowledge and behaviour in three culturally contrasting states in India. Journal of Biosocial Science(39), 557-573.
* Chomat, A. M. B., Wilson, I. B., Wanke, C. A., Selvakumar, A., John, K. R., & Isaac, R. (2009). Knowledge, Beliefs, and Health Care Practices Relating to Treatment of HIV in Vellore, India. AIDS Patient Care and STDs, 23(6), 477-484.
* Kielmann, K., Deshmukh, D., Deshpande, S., Datye, V., Porter, J., & Rangan, S. (2005). Managing uncertainty around HIV/AIDS in an urban setting: Private medical providers and their patients in Pune, India. Social Science & Medicine, 61(7), 1540-1550.
* Majumdar, B. (2004). An Exploration of Socioeconomic, Spiritual, and Family Support Among HIV-Positive Women in India. Journal of the Association of Nurses in AIDS Care, 15(3), 37-46.
* McGrath, P., Holewa, H., Koilparampil, T., Koshy C., George, S., (2009) Learning from each other: cross-cultural insights on palliative care in Indian and Australian regions, International Journal of Palliative Nursing, 15, (10), 499-509.
* Mignone, J., Washington, R. G., Ramesh, B. M., & Blanchard, J. F. (2007). Formal and informal sector health care providers in southern India: role in the prevention and care of sexually transmitted infections, including HIV/AIDS. AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 19(2), 152-158.
* Miles, M., Gillespie, J. V., & Holditch-Davis, D. (2001). Physical and mental health in African American mothers with HIV. Journal of the Association of Nurses in AIDS Care, 12(4), 42-50.
* National AIDS Control Organisation (2006). HIV/AIDS epidemiological, surveillance and estimation report for the year 2006. New Delhi: Ministry of Health and Family Welfare, Government of India.
* Soloman, S., Bativia, A., Venkatesh, K., Brown, L., Verma, P., Cecelia, J., et al. (2009). A longitudinal quality-of-life study of HIV-infected persons in south India: the case for comprehensive clinical care and support services. AIDS Education and Prevention, 21(2), 104-112.
* Subramanian, T., Gupte, M. D., Dorairaj, V. S., Periannan, V., & Mathai, A. K. (2009). Psycho-social impact and quality of life of people living with HIV/AIDS in South India. AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 21(4), 473 - 481.
* Tarakeshwar, N., Srikrishnan, A. K., Johnson, S., Vasu, C., Soloman, S., Merson, M., et al. (2007). A social cognitive model of health for HIV-positive adults receiving care in India. AIDS Behaviour(11), 491-504.

Dr Sue Rice, B.A, Grad Dip Ed, M.SocWk, PhD Adjunct Research Fellow, International Program of Psycho-Social Health Research, Central Queensland University.
Dr Pam McGrath B.Soc.Wk., MA., PhD, Director, International Program of Psycho-Social Health Research, Central Queensland University.

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