Supporting Safe Disclosure for Children
A growing body of evidence[i] shows that HIV-positive children who are aware of their HIV status show greater adherence to treatment and an improved sense of well-being. Disclosing their HIV status to children can help ensure they live healthier, longer lives. The most recent WHO guidelines[ii] recommend that “Children of school age should be told their HIV positive status; younger children should be told their status incrementally … in preparation for full disclosure.”.
Yet despite this, many children living with HIV are not aware of their status. REPSSI (the Regional Psychosocial Support Initiative) and partners have found that parents and caregivers struggle with telling their HIV-positive children about their status, and need additional support in doing so.
We must remember also that disclosure to children is a process which must be handled carefully. Health workers, counsellors, and parents require training and preparation, so that appropriate support is provided before, during, and after disclosure.
What can be done to assist parents and health care workers with disclosure to children? REPSSI has developed an initiative to improve physical, mental and social health for children, which can help answer to this question.
“I realised the need to involve these children in their care”
Mercy Lucy Chikurura is a nurse counsellor with Batanai HIV & AIDS Service Organisation in Zimbabwe. Her work encompasses post-test HIV support services, programmes for pregnant women to prevent mother-to-child transmission of HIV, and outreach services to assist with treatment adherence for HIV positive families and children. Most of these children were not told of their status.
“Children were started on anti-retroviral drug therapies (ARVs) through their parents,” Mercy explains. “They were not told that they were HIV positive. You’d find that the parents get their children tested without their knowledge, they’re started on ARVs, and their parents come to collect drugs for them.”
In 2010, Mercy began a distance-learning course, Certificate Course in Community Based Work With Children and Youth, that gave her a new insight into disclosure for children.
“With the certificate course, I realised the need to involve these children in their care. So I educated the parents who were coming to collect drugs for their children that it was necessary for them to bring the children for reviews so that we could counsel them, so that we could give them the information.
“So far it has helped quite a lot. We actually have now children coming to collect their own drugs … and they talk freely about their conditions. They even ask questions where they have problems … and you’d find that they are also participating in decision making.”
The Certificate Course was developed by REPSSI and UNICEF East and South Africa, and it is accredited through the University of KwaZulu-Natal. The skills developed throughout are applicable to anyone working directly with children at community level: teachers, volunteers, community leaders, health workers. There are currently 1500 graduates in ten countries across East and Southern Africa.
While the focus of the course is far broader than just disclosure, Mercy’s story illustrates just how this kind of training can have benefits for those working in children’s health and adherence.
“I think this this programme is very important,” Mercy smiles. “I feel I’ve been given a tool box.”
The “Talking Book”
In addition to the broader training available through the Certificate Course, REPSSI has developed a practical tool specifically to support parents in disclosing HIV status to their children.
The “Talking Book” is an illustrated tool for counselors and health care workers to guide caregivers on how to disclose a child’s HIV status. A facilitators’ guide accompanies the illustrated book, and provides comprehensive advice for those working with caregivers on disclosure.
A pilot study conducted by the WITS Reproductive Health & HIV Institute found that the book was successful when used by doctors, nurses and lay counselors in helping caregivers feel more prepared to disclose. “It is easy to follow and you know you are covering the same important issues with every group you give, so you don’t leave out important parts,” one counsellor remarked. Another counsellor noted that, “caregivers need to feel supported in the knowledge that disclosure is not an emergency but rather a process....when they have a plan of how to do things and are educated, it is all easier.”
More information on REPSSI’s Talking Book can be found on the Publications page of REPSSI's website.
[i] Recent relevant research includes:
- Blasini et al (2004), Disclosure Model for Pediatric Patients Living with HIV in Puerto Rico: Design, Implementation, and Evaluation. “Most youth (70%) had feelings of normalcy 6 months post-disclosure, and most also improved their adherence to therapy after disclosure as reported by both patients (58%) and caregivers (59%). Eighty-five percent of youth and 97% of caregivers considered disclosure a positive event for themselves and their families.”
- Nabukeera-Barungi N et al. (2007), Adherence to antiretroviral therapy in children attending Mulago Hospital, Kampala.
- Giacomet V et al. (2003). Adherence to antiretroviral therapy and its determinants in children with human immunodeficiency virus infection: a multicentre, national study.
- Williams P et al. (2006). Predictors of adherence to antiretroviral medications in children and adolescents with HIV infection.
- Polisset J et al. (2009) Correlates of adherence to antiretroviral therapy in HIV-infected children in Lom, Togo, West Africa.
- Bikaako-Kajura W et al. (2006) Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda.