HIV/AIDS care begins at home
A series of articles by guest writers for World AIDS Day
Part of AVERT's World AIDS Day 2012 campaign, ‘Reflections on the Epidemic’ are a series of articles by guest writers.
Our guest writers range from global leaders, writers, experts, activists, physicians and people personally affected by HIV and AIDS; and they represent various countries, experiences and backgrounds from all over the world.
We are grateful to all our guest writers for their effort and the diverse and insightful viewpoints that they contributed to the world’s response to HIV and AIDS.
You can also see all articles and writers in this series at the end of every article.
In resource-poor settings, HIV/AIDS is widely accepted as a life-threatening condition that has successfully served to both expose and deepen weaknesses in the formal healthcare system, which is largely comprised of clinics and hospitals. The burden of disease and the need to regularly incorporate psychosocial aspects into HIV/AIDS care, treatment and support led to a consensus on the need for lay health workers, HIV/AIDS advocates, ‘expert’ patients and treatment buddies to complement the care provided by health professionals. While these subgroups were intended to be temporary measures to hold the fort until the health system was able to cope with demand, as was the case with DOT supporters for tuberculosis (TB), they have now become permanent members of the healthcare team. Their role has transitioned from that of peer educators alone to psychosocial counsellors, treatment adherence monitors and key players in patient retention in care. In several contexts, they are now allowed to test for HIV using rapid diagnostics and to refill treatment for stable patients. Most importantly, the level of trust and inter-reliance between these lay health workers and health professionals has improved remarkably.
Now, there remains one elephant in the room, and that is the role of lay health workers providing care in the households – commonly known as home-based care (HBC). For some reason, the health care economy seems to forget that illness and care begins and ends in the home, where people live. Healthcare, which is a social phenomenon, has become a technical commodity, and people are made to believe that care begins when you enter a primary healthcare clinic. Yet, everyone who has ever fallen sick, let alone the immense anthropological evidence accumulated over many decades, will attest that more often than not care begins at home. The so-called home-based care came alive as the scourge of the HIV/AIDS epidemic took hold. In the early 90’s, hospice care and home-based care institutions were very popular all over the world, and well recognised as essential parts of healthcare services at the time that our usual clinics and hospitals failed to care for sick HIV/AIDS patients. In developed countries, many such institutions were shut down in the few years towards the end of the millennium in the wake of highly active antiretroviral therapy. Only ten years later, antiretroviral therapy became widely available in developing countries. While the notion of hospice care has slowly diminished, the role of home-based care and community health workers (CHWs) seems to be escalating.
Research in developing countries highlights the contribution of HBC in case finding, referral of index patients and amelioration of the psychosocial impacts of HIV/AIDS. Care of orphans and vulnerable children rests largely on the shoulders of community health workers and their grass roots home-based care organisations. Provision of food needed to be taken with medication often comes out of their own pockets, as well as money needed to make phone calls for ambulances or pay for transport when referral is needed. New patients diagnosed with TB and HIV/AIDS are identified through door-to-door visits conducted during HBC, yet health professionals do not seem to appreciate these heroes. More recently, several research reports indicate that home-based antiretroviral treatment provision may serve to relieve the burden on our weak health systems. In other large-scale pilots, CHWs are treating malaria, pneumonia, diarrhoea and malnutrition by dispensing medical treatments in the homes. They are able to test for malaria using rapid diagnostics, a process technically similar to HIV testing. These interventions are able to overcome one of the biggest barriers in healthcare delivery – access to healthcare services. Geographic distance can be eliminated, cultural barriers can be overcome and the cost burden can be discounted.
It is now self-evident that the role of CHWs is central to accessing primary health care as a whole. However, much still needs to be done to ensure better quality of care when essential services are provided in the home. CHWs need to be adequately trained, supervised, equipped and paid. The spirit of volunteerism in a resource-poor context mired with high levels of poverty, inequality and social injustice can be very trying for any human being. Further, for home-based care to succeed, the system of clinics and hospitals needs to be optimised, and referral channels have to be strengthened. Health reforms are currently under way in many developing countries. These new policies need to open up the much-needed space for HBC to more effectively come to the fore in current efforts to turn the tide and end the scourge of HIV/AIDS. Unless HBC is formally adopted as a platform for care provision in the context of HIV/AIDS in sub-Saharan Africa, the epidemic will maintain its hold on the continent for a long time to come.
Dr. Mosa Moshabela (MD, PhD), is currently Director of the Rural AIDS and Development Action Research (RADAR), Health Systems Advisor for the Millennium Villages Project and Project Leader of the AVERT Care in the Home Study (CHoS).
Mosa and his team are coordinating a three-year research project (CHoS), which is co-funded by AVERT. The research looks at the issue of quality of care provided in the home in rural South Africa, primarily by conducting in-depth interviews with caregivers, clients and HBC organisations to examine their relationships and the challenges that exist. Tentative conclusions highlight that in order to measure the quality of HBC and to strengthen health systems, the importance of services that extend beyond medical care need to be acknowledged and included. There is also a need to build networks and strengthen the capacity of home-based care organisations to ensure they are providing the most effective care possible, and are able to provide their staff with the support they require. You can read more about the project here and access the project overview document here.
Images: 'Home-based care in a Missionvale Township, South Africa' and 'Mosa Moshabela', copyright AVERT.
Meeting the challenge of stigma in Iran
Words are not enough: Where is the genuine support for an AIDS-free generation?
Going beyond the silver bullet approach
A new generation of awareness
Mothers at the forefront of change
A few simple actions against AIDS
The reality of beginning the end of AIDS
In the balance — HIV and the Law
Striving for an AIDS free generation of adolescents
A broken unity: An American reflection on the epidemic
Universal access for people who use drugs: Not just a pipe dream
In pursuit of a cure
The future of antiretroviral treatment
Ending paediatric AIDS
A future of possibilities
Riding the waves of HIV
The Paediatric HIV response in the context of AIDS optimism
HIV/AIDS Care begins at home
HIV/AIDS in Uganda: Myth to reality
Why beauty is a great weapon in the fight against HIV/AIDS
HIV Walk, unravels the epidemic
The importance of Parliamentary voices in the AIDS response
Women breaking the stereotype
Resources for a rights based approach to address the HIV/AIDS pandemic
AIDS - It’s not over
Backing the community response
Gogo-getters become elders
Getting to zero
The search for common humanity at the heart of the AIDS response
AIDS is still hot in India
Why involve women with HIV?
All opinions expressed in 'Reflections on the Epidemic' do not necessarily represent those of AVERT.