The International Children’s Palliative Care Network (ICPCN) held the monthly Children’s Palliative Care (CPC) webinar on 18 May where we discussed palliative care for children with HIV/AIDS. The ICPCN hosts webinars every third week of the month on Thursdays from 1 – 2:30 PM UK Time. Dr Jane Nakawesi and Dr Pradnya Talawadekar were the speakers and they made detailed presentations relating to the topic.
According to the UNAIDS factsheet 2022, 40.1 million people have died from AIDS-related illnesses since the start of the epidemic. In 2021, of the 38.4 million people living with HIV, 36.7 million were adults (15 years or older) and 1.7 million children (0–14 years). 85% of all people living with HIV knew their HIV status in 2021. The introduction of potent antiretroviral drugs in HIV care has rendered HIV infection a chronic condition with a markedly reduced morbidity and mortality rate.
While Antiretroviral therapy (ART) brings about a higher life expectancy, children living with HIV and their families still face physical, psychological, psychosocial, and spiritual issues. Emerging resistance to antiretroviral drugs presents a growing challenge to the treatment of HIV. In children, HIV resistance can also be acquired from their ART exposed mothers. A significant number of children infected with HIV are also orphans of parents who died of HIV. Dr Nakawesi said, “ART does not take away the need for palliative care. Palliative care can support adherence to ART and help to manage symptoms for those on antiretrovirals (ARVs) from the point of diagnosis to the end of life.”
Palliative care is an essential component of a comprehensive package of care for people living with HIV&AIDS because of the variety of symptoms they can experience – such as pain, diarrhoea, cough, shortness of breath, nausea, weakness, fatigue, fever, and confusion. At the community level, lack of palliative care places an unnecessary burden on hospital or clinic resources. The lack of strategies for pain management and lack of experience in young patient populations are obstacles to the receipt of HIV paediatric palliative care. Because of HIV cluster in families, for children with living parents, there is a considerable likelihood that the parents are living with the virus which adds to the complexity of children’s support and care needs.
There is a small body of evidence on the palliative care needs of children living with HIV in Africa. One study identified that 75% of children with HIV have psychological trauma. Family members may experience depression or may bargain with God to heal the child. Children themselves may exhibit signs of stress, including behavioural responses. The diagnosis of a serious chronic illness such as HIV and AIDS is life changing for the entire family.
Challenges facing palliative care for children with AIDS in Africa:
- Inadequate knowledge and skills in children’s palliative care and management of childhood HIV/AIDS among care providers.
- Families refuse to engage in HIV treatment services for a variety of social and cultural reasons.
- Lack of resources for identification, monitoring, treatment, and follow up
- Severe infrastructural weaknesses limiting access to health facilities, drugs, support and other treatment.
- Stigmatization of AIDS resulting in failure to engage with healthcare services.
- The guilt associated with mother-to-child-transmission
The total number of children in need of palliative care globally each year may be as high as 21 million, and of these, 8 million may have problems that require specialist CPC. In India nearly half of the children who are perinatally infected present late to the ART centres. Although much of India has a low rate of infection, certain places have been more affected than others. Dr Pradnya said, “Poor adherence and low CD4 counts at baseline are affecting mortality. Patients with HIV/AIDS live longer with their illness, symptom management becomes an increasingly important health issue. Children are dependent on adults for access to treatment and adherence – adherence counselling and education is essential. There is a huge need for Palliative Care services.”
Barriers to Quality Palliative Care in India
- Unpredictability of the HIV trajectory
- Opportunistic Infections
- Hope of a cure, which leads to an unwillingness to access palliative care
- Stigma and discrimination
- Geographical location
- Access to funding
Culture, Social background and religion have to be considered while planning the care of a child with a life-limiting condition. Health Care Workers (HCWs) dealing with children should assess and address the needs of children and the family. They should be well-versed with the developmental needs and the context of the medical system. They should know the social, cultural, and economic implications. Special consideration has to be given to issues of adolescents while transferring them to adult services. It is important to identify stakeholders and policy makers who will be helpful and to showcase evidence-based impact of community-based programs.