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AVERT-funded home-based care study featured in PLOS ONE
CHoS assessed challenges facing home-based care providers in rural South Africa in the context of HIV and AIDS. The PLOS ONE article focuses on outputs of the research regarding poor referral systems between hospitals/clinics and community care workers, and the trend of these care workers using their own funds and food to support clients.
Community care workers provide crucial support to people living with HIV and AIDS in their homes in South Africa, and Southern Africa more widely. They are most often volunteers from the community working through home-based organisations to provide both physical and emotional support to people in their homes.
Here we interview Ilona Sips (pictured above), CHoS lead field researcher and lead author of the PLOS ONE article.
What impact are poor referral systems from hospitals/clinics to home-based care providers having on people living with HIV and AIDS?
People in need of care are not being referred to care programmes although we know they need help, for example with taking their medication. For people living with HIV, taking their treatment properly is essential for their quality of life and it influences their health status.
We have seen that the lack of referrals from clinics and hospitals to home-based care services really affects the quality of life of people who do not have the social networks to provide medical and household support, such as collecting water, within their homes. We are therefore seeing a whole group of people who are sick missing out on essential health services.
How does the trend of community care workers sharing their personal funds and food with their clients to support treatment adherence and clinic attendance affect their own livelihoods and wellbeing?
Community care workers live in the same communities as their clients, where many people are vulnerable and are living in poverty; unemployment is high and people are reliant on social security grants to get by.
Community care workers sometimes receive stipends for their work but these are very small and are often irregular, therefore sharing the small amount they have increases the risk of poverty. People use their own resources because they feel compassion for their clients, but this increases the risk of creating a downward spiral of poverty. Community care workers generally work on a voluntary basis with full-time hours, which affects their potential to increase their livelihoods.
The introduction of risk protection strategies is recommended by the study as an urgent need. Could you give us an example of the type of strategy needed?
A lack of resources for community care workers puts their health at greater risk as they do not have the means to protect themselves in their work. There is a real need for dedicated government funding for home-based care organisations to procure resources, such as gloves and aprons. This would help both community care workers and primary caregivers (often family members, who provide care around the clock) to protect themselves, while providing care to people living with HIV and AIDS in their homes.
How can the government and policy-makers in South Africa ensure that community care workers are better integrated and recognised by the formal health system to ensure they can provide good quality care to people living with HIV?
Through our study we found that healthcare professionals are unaware of what community care workers do. Their importance needs to be effectively communicated to healthcare professionals in their training, to introduce them to community initiatives that respond to the challenges of HIV and AIDS.
Community care workers feel that health care professionals (such as nurses) do not want to engage with them, as they are afraid they will take over their jobs. But they need to see them as colleagues speaking from the community level. The government’s role is to ensure doctors and nurses receive this training, as well as hands-on experience, to combine medical and community understanding.
How has the CHoS study worked with the government to ensure the findings of this research influence policy change?
Throughout the research process we engaged research participants fully in the process so that they were not just receiving the results. This also included other stakeholders such as local representatives from the Department of Health and the Department of Social Development to create a platform for different groups to share information and learn from each other outside of an official setting.
At the end of the study we organised a conference to share the final results, and connect people at different levels of the process to influence policy. This helped to bridge the communication gap and ensure government and policy-makers understand that home-based care organisations do not have regular internet access and often lack phones and faxes. Face to face communication and information in local language is most effective. Engaging organisations in the development of policies affecting them is crucial.