The Children’s Palliative Care (CPC) Project of the Indian Association of Palliative Care aims to improve the quality of life of children with HIV and other life limiting illness. The five-year project (part of the two country project of the Department of International Development, UK) is being implemented in the Mumbai region.
Dr Pradanya Talawadekar, country coordinator of the project, writes for the India edition of ehospice about the needs of children living with HIV/AIDS, as well as the concern of their caregivers.
The article begins with statistics to contextualise the problem. In India an estimated 2.4million people are living with HIV and/or AIDS. Maharashtra state, Mumbai has the fourth highest incidence of HIV in the country. Children with HIV and other life-limiting conditions frequently suffer from severe pain and other distressing symptoms throughout the trajectory of the disease.
In the article, Dr Talawadekar addresses issues raised in focus groups with children living with HIV, as well as their caregivers.
The concerns of caregivers include: worries about their own health by biological parents; extended family members report worries about their own children becoming infected through the HIV infected child. It is reported that employees of NGOs and orphanages have difficulty forming a rapport with the child in their care due to frequent changes in duty allocation.
It is reported that caregivers want information on HIV, material and non-material support, and that they expressed their difficulty in speaking about the diagnosis with the child.
According to the article, children have different concerns regarding their illness. It was reported that they are aware of terms related to their sickness, but that they do not know the meaning of the terminology. Their main concern was the taking of medication. Also concerning is the lack of family for some of the children. Children who have lost a sibling to the disease may anticipate their own death. Children staying with family members may feel neglected.
Dr Talawadekar reports that children diagnosed with HIV may face spiritual distress (“Why me?” questions) and may miss the life led by healthy children.
According to the article, the CPC Project in collaboration with the multi-disciplinary team is trying to improve care in the following ways:
- Communication with professionals
- Rendering information to child based on the existing knowledge
- Home visits
- Ward visits
- Open door policy
- Activities for children and their caregivers
- Holistic approach of the whole team with the aim to improve the quality of life of the child and caregivers helps to make changes in their life.
Read the full article on the India edition of ehospice.