Close to the opulent football stadiums in South Africa, where millions of football fans are being drawn, Oxford scholars, in collaboration with local researchers, are working tirelessly to investigate a problem that will remain even after the World Cup has left. The Young Carers South Africa scheme entails a study of over 7,000 individuals in some of South Africa’s poorest neighborhoods who are taking care of relatives who have AIDS. Through a partnership with three different South African universities, the South African government, and several NGOs, the two-year project is using 35 members, which includes community managers, interviewers, and volunteers working on the field to accumulate substantial data, which will be useful in terms of social policy not only in South Africa but globally as well.
The creator of the Young Carers project is Lucie Cluver, an individual from the department of social policy and social work in Oxford, whose inspiration came from her PhD research involving 1,000 orphans whose parents had passed away from AIDS. Cluver discovered that these children experienced higher psychological distress than those orphans whose parents had passed away from other causes. The orphans who had AIDS also had more chances of contracting the disease. Cluver shared her research with a professor in South Africa who then introduced her to Zola Skweyiya, the country’s social development minister. The very next day Skweyiya asked her to a meeting and suggested that her research needed to become a national study.
After two years, the Young Carers South Africa project has teams in three South African provinces, interviewing 6,000 children and 1,500 of their guardians or parents on the subject of their accessibility to social welfare grants, free school meals, and health visitors. Interviewers go to the heart of these communities, be it at homes, schools or open spaces. They hold face-to-face interviews, even those sites which may have only be accessible through small aircraft or 4×4 vehicles. These interviews are often a chance for children to share about the secret disease in their family. Cluver remarks that the most challenging circumstances are in which these children reside. Researchers of the Young Carers project have navigated through taxi wars and riots in Cape Town, gangsters in Durban, and cholera outbreaks in Mpumalanga, sometimes even walking through open sewers, over rubbish heaps, and into homes where destitute people keep their surroundings spotlessly clean.
The findings of the study reveal that children living with those suffering from AIDS have approximately the same level of psychological distress as those who have been orphaned by AIDS. It is because of the unnecessary cultural stigma surrounding families who have HIV or AIDS in their household. This stigma causes kids to be gossiped about, teased, and treated with the utmost caution. According to the research, nearly 40% of children coming from such homes have missed school or left altogether compared with just 22% of homes affected by other diseases, and only 5% from healthy households. The study states that roughly one-third of young caregivers have been carrying out intimate care such as washing their loved ones, helping them use the bathroom, and cleaning up their wounds.
Cluver asserts that these children are not passive victims, rather kids wanting normal things like their affluent counterparts. They get excited about football and chose pseudonyms of football players when providing their stories to be noted in the research. These children worry about the same things as first-world kids. One such example of this was where a 13-year-old girl sobbed throughout her interview because kids at school were calling her "baboon face." However, when these children return home, they wash blankets, feed their younger siblings, look after someone with tuberculosis, ensure their folks take prescribed anti-retrovirals, miss school for hospital visits, and queue to obtain medication for their unwell loves ones still at home. As a result, they battle to concentrate when they are trying to attend school.
It is expected that over two million South African children will lose their parents to AIDS by 2015; in 2008, the figure was already 1.4 million. Cluver believes that the Young Carers project will make a difference in this situation; for her, the project is science to benefit social policy.
The objective of this study is to shed light on the magnitude of the challenges that families affected by HIV/AIDS encounter. According to Cluver, there hasn’t been any extensive research in developing countries to grasp the amount of responsibility that these children bear at home and the effect it has on them. Understanding whether these children are experiencing greater levels of depression, trauma, or anxiety compared to their peers, and whether they are coping at school or unable to access healthcare services is critical information. We must know if they are susceptible to catching TB from those they care for, among other diseases. Finally, we must determine what assistance they need.
NGOs and the South African government are both interested in the study’s results to adapt their policies to help these children, according to Cluver. Although the study’s influence leaves Cluver optimistic, she acknowledges that the researchers feel helpless in the meantime. One child shared that he merely crossed his arms at lunchtime because he couldn’t afford food, and his mother could no longer work due to her condition. Another 11-year-old pushed her mother to the clinic in a wheelbarrow and brought her a glass of water since she couldn’t get out of bed.
As per Cluver, parents relayed shocking incidents to researchers and expected assistance for their situation. However, supplying them with a biscuit and a certificate was the best they could provide. Cluver stated that it is difficult to face families who have opened up their lives, and afterward, the researchers must leave them with no provision.
