Assessing the need for palliative care for children

Stephen R Connor, PhD, International Palliative Care Consultant and Principal Investigator of the project, introduces key findings from a collaborative research project on the need for children’s palliative care in three sub Saharan African countries – Kenya, South Africa and Zimbabwe.

Dr Stephen R Connor, Principal Investigator of the research project

Dr Stephen R Connor, Principal Investigator of the research project

There is increasing recognition of the unmet need to provide palliative care services to children especially in low and middle-income countries. However, the extent and nature of this need has not been adequately documented. There are critical gaps in the current palliative care response arising from HIV and AIDS, non-communicable diseases, complex chronic and neonatal conditions. The United Nations Children’s Fund (UNICEF) and the International Children’s Palliative Care Network (ICPCN), in collaboration with national palliative care associations, commissioned this joint analysis to assess critical needs and gaps in children’s palliative care (CPC), which is defined as care for infants, children, and adolescents from birth to age 19 with life limiting and life threatening conditions.

The report assesses critical needs and gaps in children’s palliative care

The report assesses critical needs and gaps in children’s palliative care

We usually try to determine need for palliative care by using mortality data, which understates the need in a population, especially when it comes to children. This research was one of the first attempts to develop a method for calculating the need for children’s palliative care in a population using prevalence data. That is we looked at how many people at a given time with the diseases and conditions that are appropriate for children’s palliative care might need it in a given year.

We also looked at the capacity of palliative care providers to deliver children’s palliative care (CPC) in these countries. The result was that we could then do a gap analysis to show how little CPC was being delivered against the need. In South Africa and Zimbabwe only about 5% of the need for specialized CPC could be met, and in Kenya less than 1%.

The method looks at the number of children per 10,000 children in the population so it will eventually be possible to map this need worldwide. However, there are vast differences in the population need depending on the income levels in the country and the capacity of the current health care system. A recent study in the UK found that 32/10,000 children needed CPC while in this study we found rates that ranged from 120 to 180 children per 10,000. It’s not surprising that Southern and Eastern Africa would have such high rates due to HIV and other problems in the health care systems.

We hope to carry on this research with UNICEF and ICPCN to help advocate for CPC as the provision of CPC continues to lag behind adult palliative care. How can we tolerate children living and dying in pain when we have the ability to relieve the suffering of these little ones?

To find out more…

Coming up…
The First ICPCN Conference: Transforming Children’s Palliative Care – from ideas to action takes place next week in Mumbia, India, 10-12 February 2014. (ICPCN in partnership with Tata Memorial Hospital, Mumbai). 

This entry was posted in NATIONAL & INTERNATIONAL REPORTS, RESEARCH and tagged , , . Bookmark the permalink.

2 Responses to Assessing the need for palliative care for children

  1. Dear Doctor Stephen R. Connor
    Your words ‘How can we tolerate children living and dying in pain when we have the ability to relieve the suffering of these little ones?’ , these words create a question which is a Calling For to the World. As an individual member of the International Children’s Palliative Care Network, I want to give as a Gift all my studies in the field of Linguistics and Aesthetics, in the Non-PharmacologicalCare, in order to enter the Child’s delicate-and-private world, owing to the power of words, signs and gestures. detecting his own feelings which become behaviours, giving our Presence as an Atmosphere always New, I am my Little Giampaolo’s aunt, who died at 19 months in 2010, because of the AcuteLymphoblasticLeukemia. He suffered a lot. He became that Pain which was consuming His mind-and-body. He was cared only in the Pharmacological Care. He died in His great pain. My studies are devoted to Him. His pain was underestimated, underrecognized, undervalued. He was closed within Himself, and he Never succeeded in escaping from His pain. He never spoke, because the pain was so great that faded His will of speaking, at 19 months. Giampaolo was diagnosticated the Leukemia at 12 months. I want to be-and-do all what I was never permitted to be-and-do for my Little Nephew, Luisella Magnani.

  2. Pingback: Assessing the need for palliative care for children | EAPC Blog | All Things Palliative - Article Feed

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