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Children’s Palliative Care at IAPCON Coimbatore 2017

Author: Prof Julia Downing
10 February 2017
  • Prof Julia Downing speaks about children's palliative care and children with AIDS at the IAPC Conference taking place now in Coimbatore in India

ICPCN's Chief Executive, Prof Julia Downing, reports on presentations given on the first day of the 24th International IAPC Conference presently taking place in Coimbatore, India.

The 24th International Conference of the Indian Association of Palliative Care opened today in Coimbatore. The opening plenary presentation was given by Prof Mary Ann Muckaden, the President of the Indian Association of Palliative Care and former Chair of the International Children’s Palliative Care Network (ICPCN). Her presentation on Taking Palliative Care Forward challenged us to think about what we need to do and how we can continue to move palliative care forward, both in terms of adult and children’s palliative care and how we need to provide an integrated and comprehensive service for all in need.

Children with HIV
Ms Poonam Baghai opened the session on children’s palliative care by reminding delegates of the differences between adult and children’s palliative care, and the need to think about the unique needs of children. The first presentation, given by Prof Julia Downing, Chief Executive of the ICPCN looked at the provision of palliative care for children with HIV. She looked at the situation of HIV in children in India and the impact of the illness on the child and their family. The importance of looking at the impact in terms of the physical, psychological, social and spiritual impact, and how this may differ in children with HIV as opposed to conditions such as cancer. The unpredictable nature of the disease in children was also discussed and the impact of this on our provision of palliative care. She then stressed the need for the integration of palliative care into HIV care and the provision of ART. Noting that when services are integrated, children experience fewer symptoms, are more adherent, am more likely to stay in care, have fewer psychological issues and an overall better quality of life.

Empowering bereaved parents
Empowering bereaved parents is an important aspect of children’s palliative care but is often not focused on. Dr Jayita Deidhar, a psychiatrist from Mumbai, challenged us to ensure that bereaved parents are cared for, supported and empowered. She shared various research studies in this area, showing that many bereaved parents do not access services, even when available. So how can we empower them, and provide services that are appropriate, available and accessible to them. She also reminded us that bereaved parents are living with the loss of their children on a daily basis – it is not something that goes away, but through empowering them, they are able to live with their loss.

Effective spiritual care for children
Dr Joris Gielen than explored the issue of spiritual needs and spiritual care in children. He discussed the complexity of providing spiritual care to children due to their different stages of development and therefore understanding of spirituality and the meaning of life. However, children are often more mature than their caregivers think and it is important that they are included in their care. Effective spiritual care is only possible if the child is treated as an active participant in the care process at an age/development appropriate level – through involving the child as an active participant you are empowering them as well as their parents. It also recognises the rights of the child to be involved in their care and to try and reduce any collation that may otherwise exist with regards to the child’s illness, prognosis and recognises their spiritual need to understand what is happening to them.

Need to provide psychological and spiritual counselling of the parents – you need to get the parents on board. Dr Joris also touched on the meaning of suffering and the impact of this at different stages of development, and how this is broader than just that of religion. The use of assessment tools such as the FICA tool in spiritual care for children was discussed, and the importance of being aware of the stage of the child’s development and thus their understanding of spirituality.

New manual
In concluding the session, participants were informed of the newly published manual on children’s palliative care and encouraged to get a copy so that they can use it as a reference for providing children’s palliative care in India.

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