Author: Sue Boucher, Programme & Communications Manager at PatchSA
South Africa continues to shoulder the world’s largest HIV epidemic, with more than eight million people living with HIV today which is approximately 12.8% of the population. (Statistics South Africa) Enormous gains have been made in testing and access to antiretroviral therapy (ART), transforming HIV from a once rapidly fatal illness into a chronic, manageable condition. Yet for thousands of children, adolescents and adults, the realities of advanced HIV disease, persistent symptoms, psychosocial distress, stigma and unstable treatment outcomes mean that palliative care remains an essential, but still underprovided, part of the national response.
The burden of suffering
While ART has dramatically reduced AIDS-related deaths, many people still experience severe pain, complex symptoms, opportunistic infections, neurocognitive challenges, and profound psychosocial stress. Children, in particular, face unique vulnerabilities: developmental delays, complex co-morbidities, lack of age-appropriate communication, and the emotional weight of illness within families already strained by poverty, loss and stigma.
Adolescents remain at especially high risk of treatment interruption and mental health challenges, while many adults presenting with advanced HIV disease have late diagnoses, treatment failure or social circumstances that complicate consistent care. In these contexts, palliative care, which includes the relief of pain and symptoms, psychosocial and spiritual support, and family-centred care, should not be seen as optional. It can be lifesaving and improves adherence and overall outcomes across the continuum of HIV care.
Palliative care is not reaching everyone
Despite national health policies that recognise the importance of palliative care, access remains uneven:
- Only a fraction of children with life-limiting illnesses, including HIV, receive specialist palliative care.
- Primary care clinicians often lack training in paediatric palliative care, leading to underassessment of pain and inadequate symptom control.
- Families facing complicated disease, bereavement or treatment failure frequently fall through gaps between HIV clinics, hospitals and community services.
- Funding for community- and home-based care is inconsistent, making hospices and specialist centres vulnerable and limiting their ability to reach more households.
These gaps leave many people living with HIV facing unmanaged symptoms, emotional distress, unsupported caregiving responsibilities and preventable suffering.
How PatchSA is addressing the unmet need
PatchSA (Palliative Care for Children South Africa) is an organisation dedicated exclusively to children’s palliative care. Its work is critical in addressing the unmet needs of children living with HIV and other life-limiting conditions.
PatchSA provides:
- Training and capacity building through the Patch Academy, offering online and in-person courses for nurses, doctors, social workers, counsellors and community caregivers
- Guidance and resources to help practitioners assess pain, communicate effectively with children and families, and manage complex symptoms
- Advocacy for policy implementation, ensuring that children’s palliative needs are recognised at provincial and national levels
- Support for families, including communication tools, psychosocial resources and bereavement guidance
Through its collaborations with universities, hospitals and NGOs, PatchSA is building the next generation of paediatric palliative care practitioners and embedding best practice into the health system. As the country continues its fight to end AIDS as a public health threat, palliative care must be recognised not as an optional extra, but as a core component of comprehensive, compassionate and effective, HIV care.
Click here to learn more about PatchSA’s education programme.
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