PhD research improving HIV disclosure practices in Malawi

Malawi has made immense strides in combating its HIV epidemic since it introduced free antiretroviral therapy (ART) in 2004. However, Malawi’s HIV prevalence remains one of the highest in the world, and of the 1 million estimated people living with the virus, 84,000 are children under the age of 14.

Moreover, the current rate of disclosure of HIV status to children in sub-Saharan Africa remains low – below 40 per cent – despite the World Health Organisation stating that children should be told of their HIV status between the ages of six and 12 years.

Non-disclosure has been associated with lack of ART medication adherence, and has the potential for children to transmit the virus once they reach adolescence and engage in sexual activity.

Fatch Kalembo is a native Malawian and registered nurse whose PhD research at Curtin is set to dramatically improve HIV disclosure practices to children in Malawi and other sub-Saharan countries.

“Currently there are many children who are growing up without knowing they have HIV, or they are inappropriately disclosed to, which can have a negative impact on their mental wellbeing,” Kalembo says.

Kalembo and his research team from Curtin and the University of Malawi are developing a series of age-appropriate children’s books that will help inform HIV positive children about their illness, and how they can manage their disease to go on to lead happy, fulfilling lives.

The books will use pictures, stories and songs in local Malawian languages to educate children about HIV. They will be gifted to all children living with HIV for their sixth, eighth, 10th and 12th birthdays, with each series containing age-appropriate content.

“The provision of free ART has made a huge impact on the physical health of people living with HIV, but there is gap that is not being addressed, and that is the psychosocial wellbeing of people living with HIV,” says Kalembo.

“These books will address that gap, so when a child goes to a clinic to get their medication, they will also receive appropriate education about living with the disease.

“The books will tell them what exercises to do, the best types of food to eat and help answer any questions they might have, such as what if they want to get married when they grow up? What about their education and future?

“There is plenty of discrimination towards HIV sufferers in Malawi, so these books will also help children develop resilience and understand that even though they have this disease, there are still steps they can take to live physically and mentally well.”

In addition to the books, Kalembo and his team have developed training manuals for healthcare workers, parents and primary caregivers on how to provide appropriate disclosure and use the books effectively to teach children about their HIV status.

“Many parents and healthcare workers don’t have the confidence to disclose because they lack the materials to guide them,” Kalembo says.

The manuals will also include information for how other stakeholders, such as the Malawian government, community leaders and school teachers, can work together to provide standardised HIV disclosure practices.

“Through my studies, I found that the people who are supporting children with HIV are working in isolation, so it’s very difficult to organise and action the care that should be given.

“What we intend to do is provide such information that each stakeholder will know what role they are supposed to play in the development and support of children with HIV.”

Kalembo has received multiple awards and scholarships for his pivotal PhD research, including Best Research Project for African PhD Students by UNESCO and the pharmaceutical company, MERCK. In 2017 and 2018 he was awarded scholarships to present his research at international AIDS conferences in Paris and Amsterdam respectively.

Once the disclosure books and training manuals have been published, Kalembo will travel back to Malawi to evaluate their impact on the treatment and wellbeing of children living with HIV. If successful, Kalembo hopes to translate the materials into additional languages and distribute them to other countries in Africa and around the world.

“It would be a dream come true to be able to contribute to the wellbeing of these children; to help them to lead fulfilling lives and contribute to the economic development of Malawi.”

About Fatch Kalembo

Fatch Kalembo graduated from the University of Malawi with a Bachelor of Science (Nursing) in 2003 and a University Certificate in Midwifery in 2006. He went on to complete his Master of Public Health at Huazhong University of Science and Technology in China in 2013. He has recently graduated with a PhD from Curtin and is now completing his postdoctoral studies, which will evaluate the impact of his HIV disclosure materials.