9- More Hands in Complex ART Delivery? Experiences from the Expert Clients Initiative in Rural Uganda
African Sociological Review,
Vol. 13 No. 1 (2009): African Sociological Review
Abstract
This paper aims to analytically describe the experiences and outcomes of involving people
living with HIV/AIDS in clinical care of HIV/AIDS within the healthcare clinic in a poorly
resourced setting. With HIV/AIDS treatment finally available in poorly resourced settings,
there was huge number of people in need of clinical care. As a result, professional health workers
became overwhelmed by the demand for treatment and care. Consequently, this called for a
new way to handle the rising numbers and needs of clients at the health clinic level so as to
minimise the burden of care on the health professionals. An 18 months ethnographic study
was conducted between 2005 to 2007 with professional medical workers (including Doctors,
nurses and counsellors, clinicians), ART clients and with family care givers of ART clients, at
a Health center IV-HIV clinic in a rural district in Uganda. The result shows that the scaling
up of ART and subsequent introduction of Expert Clients as a new care arrangement within
the health clinic has opened up the clinical space as some pseudo space where at least in principle, the patient has a voice in care with various outcomes.
Keywords
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- Adetoyeje Y¹. Oyeyemi, Bashir O. Oyeyemi², Ibrahim S. Bello. 2007. Physicians a nd AIDS care: does knowledge influence their attitude and comfort in rendering care? African Journal of Health Sciences, volume 14, numbers 1-2, January-June.
- Amolo-Okero, F., Aceng, E., Madraa, E., Namagala,E., & Serutoke, J. (2006). Scaling up antiretroviral therapy: Experience in Uganda. Health policy and planning 19(5): 336-345.
- Attride-Stirling J. 2001. ‘Thematic networks: An analytical Tool for Qualitative Research.’ Qualitative Research 1(3), 385-405.
- Bangsberg DR, Acosta EP, Gupta R, Guzman D, Riley ED, Harrigan PR, 2006. Adherence-resistance relationships for protease and non-nucleoside reverse transcriptase inhibitors explained by virological fitness. AiDS 20:223-231.
- Barlow J, Turner A, Wright C. 2002 A randomized controlled study of the Arthritis Self-Management Programme in the UK. Health Education Research 2000; 15: 665-80.
- Barnett, T., & Whiteside, A. 2002. AIDS in the Twenty first century: Disease and Globalisation. London: Pelgrave Macmillan Press.
- Boden D, Hurley A, Zhang L, Cao Y, Guo Y, Jones E, et al. 1999 HIV-1 drug resistance in newly infected individuals. JAMA 1999; 282:1135-1141.
- Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient Self-management f Chronic Disease in Primary Care. 2002 Jama-Journal of the American sociation; 288: 2469-75.
- Chen, L. Hangvaravongchai P. 2005. HIV/AIDS and Human Resources - Editorial. Bulletin of the World Health Organisation 83 (4243-244) [http:/ www/who.int/bulletin/volume/83/4/243.pdf ].[Accessed 18 January 2007].
- Crane J.T. et. al. 2006 The price of adherence: qualitative findings from HIV positive individuals purchasing fixed-dose combination generic HIV antiretroviral therapy in Kampala, Uganda. AIDS and Behaviour 10 (4): 437-442.
- Dielman, Marjolein, Bwete Vincent, Everd Maniple, Odaga John, Marjam Bakker, Grace Namaganda and Gert Jan van der Wilt 2007. ‘I Believe that the Staff have Reduced their Closeness to the Patients: An Exploratory Study on the Impact of HIV/AIDS on Staff in four Rural Hospitals in Uganda.’ BMc Health Services Research 7: 205.
- Farmer, P., Léandre, F., Mukherjee, J., Gupta, R., Tarter, L., & Yong-Kim, J. 2001. Community-based treatment of advanced HIV disease: Introducing DOT-HAART (Directly Observed Therapy with Highly Active Antiretroviral Therapy). Bulletin of World Health Organanisation, 79(12).
- Hugen PW, Langebeek N, Burger DM, Zomer B, van Leusen R, Schuurman R, et al. 2002 Assessment of adherence to HIV protease inhibitors: comparison and combination of various methods, including MEMS (electronic monitoring), patient and nurse report, and therapeutic drug monitoring. J Acquir Immune Defic Syndr 30:324-334.
- Jardine C. Expert patients: not quite what the doctor ordered. August 2005.
- http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2005/08/09/ hexp09.xml (accessed September 19, 2006).
- Jones F. Can expert patients be created? In: Perspectives on the Expert Patient.
- Presentations from a seminar held at the Royal Pharmaceutical Society of Great Britain. London: Royal Pharmaceutical Society of Great Britain; May 2004.
- Kennedy A, Rogers A, Gately C. From patients to providers: prospects for self- care skills trainers in the National Health Service. Health and Social care in the community 2005; 13: 431-40.
- Kennedy A, Gately C, Rogers A. Assessing the Process of Embedding the EPP in the NHS.
- Preliminary Survey of PCT Pilot Sites. In: National Evaluation of Expert Patients Programme. Manchester: National Primary Care Research and Development Centre, January, 2004.
- Kenny, A. and Ducket S. 2004. ‘A Question of Place: Medical Power in Rural Australia.’ Social Science and Medicine 58(6), 1059-1073.
- Kober K, Van Damme W. 2005. Human Resources for Health and ART scale up in sub-Saharan Africa. A background paper for the MSF Access to Kober K, Van Damme W. 2006. Expert Patients and AIDS care: A literature review on expert patient programmes in high income countries, and an exploration of their relevance for HIV/AIDS care in low-income countries with severe human resource shortages: Department of Public health, Institute of tropical medicine, Antwerp, March
- Marchal, B. De Brouwere V, Kegels G 2005. ‘Viewpoint: HIV/AIDS and the Health Workforce Crisis: What are the Next Steps?’ Tropical Medicine and international Health 10(4): 300-304.
- Ministry of Health 2003. national guidelines for implementation of ART.’ STD/ AiDS control program–Government of Uganda.
- Ministry of Health 2006. Annual Health Sector performance Report – Financial year 2006/2007 Kampala, Uganda: Ministry of Health.
- Ministry of Health 2005. Health Sector Strategic plan ii. Kampala, Uganda: Ministry of Health.
- Ministry of Health 2005. Uganda Sero-behavioral Survey 2004-2005, Kampala, Uganda: Ministry of
- Health.
- Ministry of Health 2005. communication strategy for Antiretroviral therapy 2005-2010. Earnest publishers: Kampala, Uganda.
- Nieuwkerk PT, Sprangers MA, Burger DM, Hoetelmans RM, Hugen PW, Danner SA, et al. 2001 Limited patient adherence to highly active antiretroviral therapy for HIV-1 infection in an observational cohort study. Arch Intern Med 161:1962-1968.
- Rosal M, Olendzki B, Reed G, Gumieniak O, Scavron J, Ockene I. 2005 Diabetes Self- Management Among Low-Income Spanish-Speaking Patients: A Pilot Study. Ann Behav Med 29: 225-35.
- Sandelowski, M. 2000. ‘Whatever Happened to Qualitative Description?’Research in nursing and Health 23: 334-340.
- Shaw J, Baker M. “expert patient” - dream or nightmare? BMJ 2004; 328: 724. Shisana O, Hall E, Maluleke KR, Stoker DJ, Schwabe C and Colvin M 2002. The impact of HIV/AIDS on the health sector—national survey of health personnel, ambulatory and hospitalised patients and health facilities. Research report. pretoria: Department of Health, 34-7.
- Stone M, Pound E, Pancholi A, Farooqi A, Khunti K. 2005 Empowering patients with diabetes: a qualitative primary care study focusing on South Asians in Leicester, UK. Family practice 1-6.
- Oyugi J H, et. al.2004 Multiple validated measures of adherence indicate high levels of adherence to generic HIV antiretroviral therapy in a resourcetting. JAiDS, 36 (5): 1100-1102.
- Treatment Action Campaign (TAC) 2006. Fighting for affordable treatment f or people with HIV. http://www.tac.org.za/index.html (accessed September, 2006).
- Tang T, Gillard ML, Funnell MM, Nwankwo R, Parker E, Spurlock D et al..2005 Developing a New Generation of Ongoing Diabetes Self- management Support Interventions. Diabetes Educator 31: 91-7.
- Tawfik L, Kinoti SN 2001. The Impact of HIV/AIDS on the Health Sector in Sub-Saharan Africa: The Issue of Human Resources. USAiD Report. Washington DC, USA Uganda AIDS Commission (UAC) and The Uganda HIV/AIDS Partnership. 2004. The Revised national Strategic Framework for Hiv/AiDS activities in Uganda 2003/2004-2005/2006: a guide for all stakeholders. February Kampala
- Uganda Cares Masaka, 2003. progress report. Masaka: July 2003
- UNAIDS 2007 AiDS epidemic update. Geneva Van Damme W, Kober K, Laga M. 2006. The real challenges for scaling up ART in sub- Saharan Africa.
- AiDS Vervoort S.C.J.M. 2007. Adherence in antiretroviral therapy: a review of qualitative studies. AiDS 21: 271-281.
- Wainberg MA, Friedland G. 1998 Public health implications of antiretroviral therapy and HIV drug resistance. JAMA 279:1977-1983
- Weidle P J, et. al.2006 Adherence to antiretroviral therapy in a home-based AIDS care programme in rural Uganda. Lancet 368: 1587-1594.
- Wendo C. 2005.’ Uganda leads way in innovative HIV/AIDS treatment’ Bulletin of the WHO, 83: 244 5 ealth Report—Working together for health. Geneva.
References
Adetoyeje Y¹. Oyeyemi, Bashir O. Oyeyemi², Ibrahim S. Bello. 2007. Physicians a nd AIDS care: does knowledge influence their attitude and comfort in rendering care? African Journal of Health Sciences, volume 14, numbers 1-2, January-June.
Amolo-Okero, F., Aceng, E., Madraa, E., Namagala,E., & Serutoke, J. (2006). Scaling up antiretroviral therapy: Experience in Uganda. Health policy and planning 19(5): 336-345.
Attride-Stirling J. 2001. ‘Thematic networks: An analytical Tool for Qualitative Research.’ Qualitative Research 1(3), 385-405.
Bangsberg DR, Acosta EP, Gupta R, Guzman D, Riley ED, Harrigan PR, 2006. Adherence-resistance relationships for protease and non-nucleoside reverse transcriptase inhibitors explained by virological fitness. AiDS 20:223-231.
Barlow J, Turner A, Wright C. 2002 A randomized controlled study of the Arthritis Self-Management Programme in the UK. Health Education Research 2000; 15: 665-80.
Barnett, T., & Whiteside, A. 2002. AIDS in the Twenty first century: Disease and Globalisation. London: Pelgrave Macmillan Press.
Boden D, Hurley A, Zhang L, Cao Y, Guo Y, Jones E, et al. 1999 HIV-1 drug resistance in newly infected individuals. JAMA 1999; 282:1135-1141.
Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient Self-management f Chronic Disease in Primary Care. 2002 Jama-Journal of the American sociation; 288: 2469-75.
Chen, L. Hangvaravongchai P. 2005. HIV/AIDS and Human Resources - Editorial. Bulletin of the World Health Organisation 83 (4243-244) [http:/ www/who.int/bulletin/volume/83/4/243.pdf ].[Accessed 18 January 2007].
Crane J.T. et. al. 2006 The price of adherence: qualitative findings from HIV positive individuals purchasing fixed-dose combination generic HIV antiretroviral therapy in Kampala, Uganda. AIDS and Behaviour 10 (4): 437-442.
Dielman, Marjolein, Bwete Vincent, Everd Maniple, Odaga John, Marjam Bakker, Grace Namaganda and Gert Jan van der Wilt 2007. ‘I Believe that the Staff have Reduced their Closeness to the Patients: An Exploratory Study on the Impact of HIV/AIDS on Staff in four Rural Hospitals in Uganda.’ BMc Health Services Research 7: 205.
Farmer, P., Léandre, F., Mukherjee, J., Gupta, R., Tarter, L., & Yong-Kim, J. 2001. Community-based treatment of advanced HIV disease: Introducing DOT-HAART (Directly Observed Therapy with Highly Active Antiretroviral Therapy). Bulletin of World Health Organanisation, 79(12).
Hugen PW, Langebeek N, Burger DM, Zomer B, van Leusen R, Schuurman R, et al. 2002 Assessment of adherence to HIV protease inhibitors: comparison and combination of various methods, including MEMS (electronic monitoring), patient and nurse report, and therapeutic drug monitoring. J Acquir Immune Defic Syndr 30:324-334.
Jardine C. Expert patients: not quite what the doctor ordered. August 2005.
http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2005/08/09/ hexp09.xml (accessed September 19, 2006).
Jones F. Can expert patients be created? In: Perspectives on the Expert Patient.
Presentations from a seminar held at the Royal Pharmaceutical Society of Great Britain. London: Royal Pharmaceutical Society of Great Britain; May 2004.
Kennedy A, Rogers A, Gately C. From patients to providers: prospects for self- care skills trainers in the National Health Service. Health and Social care in the community 2005; 13: 431-40.
Kennedy A, Gately C, Rogers A. Assessing the Process of Embedding the EPP in the NHS.
Preliminary Survey of PCT Pilot Sites. In: National Evaluation of Expert Patients Programme. Manchester: National Primary Care Research and Development Centre, January, 2004.
Kenny, A. and Ducket S. 2004. ‘A Question of Place: Medical Power in Rural Australia.’ Social Science and Medicine 58(6), 1059-1073.
Kober K, Van Damme W. 2005. Human Resources for Health and ART scale up in sub-Saharan Africa. A background paper for the MSF Access to Kober K, Van Damme W. 2006. Expert Patients and AIDS care: A literature review on expert patient programmes in high income countries, and an exploration of their relevance for HIV/AIDS care in low-income countries with severe human resource shortages: Department of Public health, Institute of tropical medicine, Antwerp, March
Marchal, B. De Brouwere V, Kegels G 2005. ‘Viewpoint: HIV/AIDS and the Health Workforce Crisis: What are the Next Steps?’ Tropical Medicine and international Health 10(4): 300-304.
Ministry of Health 2003. national guidelines for implementation of ART.’ STD/ AiDS control program–Government of Uganda.
Ministry of Health 2006. Annual Health Sector performance Report – Financial year 2006/2007 Kampala, Uganda: Ministry of Health.
Ministry of Health 2005. Health Sector Strategic plan ii. Kampala, Uganda: Ministry of Health.
Ministry of Health 2005. Uganda Sero-behavioral Survey 2004-2005, Kampala, Uganda: Ministry of
Health.
Ministry of Health 2005. communication strategy for Antiretroviral therapy 2005-2010. Earnest publishers: Kampala, Uganda.
Nieuwkerk PT, Sprangers MA, Burger DM, Hoetelmans RM, Hugen PW, Danner SA, et al. 2001 Limited patient adherence to highly active antiretroviral therapy for HIV-1 infection in an observational cohort study. Arch Intern Med 161:1962-1968.
Rosal M, Olendzki B, Reed G, Gumieniak O, Scavron J, Ockene I. 2005 Diabetes Self- Management Among Low-Income Spanish-Speaking Patients: A Pilot Study. Ann Behav Med 29: 225-35.
Sandelowski, M. 2000. ‘Whatever Happened to Qualitative Description?’Research in nursing and Health 23: 334-340.
Shaw J, Baker M. “expert patient” - dream or nightmare? BMJ 2004; 328: 724. Shisana O, Hall E, Maluleke KR, Stoker DJ, Schwabe C and Colvin M 2002. The impact of HIV/AIDS on the health sector—national survey of health personnel, ambulatory and hospitalised patients and health facilities. Research report. pretoria: Department of Health, 34-7.
Stone M, Pound E, Pancholi A, Farooqi A, Khunti K. 2005 Empowering patients with diabetes: a qualitative primary care study focusing on South Asians in Leicester, UK. Family practice 1-6.
Oyugi J H, et. al.2004 Multiple validated measures of adherence indicate high levels of adherence to generic HIV antiretroviral therapy in a resourcetting. JAiDS, 36 (5): 1100-1102.
Treatment Action Campaign (TAC) 2006. Fighting for affordable treatment f or people with HIV. http://www.tac.org.za/index.html (accessed September, 2006).
Tang T, Gillard ML, Funnell MM, Nwankwo R, Parker E, Spurlock D et al..2005 Developing a New Generation of Ongoing Diabetes Self- management Support Interventions. Diabetes Educator 31: 91-7.
Tawfik L, Kinoti SN 2001. The Impact of HIV/AIDS on the Health Sector in Sub-Saharan Africa: The Issue of Human Resources. USAiD Report. Washington DC, USA Uganda AIDS Commission (UAC) and The Uganda HIV/AIDS Partnership. 2004. The Revised national Strategic Framework for Hiv/AiDS activities in Uganda 2003/2004-2005/2006: a guide for all stakeholders. February Kampala
Uganda Cares Masaka, 2003. progress report. Masaka: July 2003
UNAIDS 2007 AiDS epidemic update. Geneva Van Damme W, Kober K, Laga M. 2006. The real challenges for scaling up ART in sub- Saharan Africa.
AiDS Vervoort S.C.J.M. 2007. Adherence in antiretroviral therapy: a review of qualitative studies. AiDS 21: 271-281.
Wainberg MA, Friedland G. 1998 Public health implications of antiretroviral therapy and HIV drug resistance. JAMA 279:1977-1983
Weidle P J, et. al.2006 Adherence to antiretroviral therapy in a home-based AIDS care programme in rural Uganda. Lancet 368: 1587-1594.
Wendo C. 2005.’ Uganda leads way in innovative HIV/AIDS treatment’ Bulletin of the WHO, 83: 244 5 ealth Report—Working together for health. Geneva.