Developing a Global Network to reach every child What Canada can do Sharon Baxter Canadian Hospice Palliative Care Association (CHPCA) Board member of the International Children s Palliative Care Network (ICPCN)
Developing hospice and palliative care for children globally where are we? What can be done together Role that Canadian pediatric palliative care practitioners can play in reaching every child This presentation was originally given on October 30, 2013 at the National Hospice Palliative Care Conference in Ottawa by Joan Marston, CEO of ICPCN
Every child is my child African Proverb
Founding beliefs of the ICPCN We have a responsibility to reach every child who needs palliative care By working together, sharing expertise, information and knowledge, providing education and advocating we can reach many more children We have the knowledge, expertise and resources in this world they are just not evenly distributed
Children s voices should be heard Children and adolescents with life-limiting conditions have very specific palliative care needs which are often different to those of adults. If these children s and adolescent s physical, emotional, social, spiritual and developmental needs are to be met, the caregivers require special knowledge and skills. We ask that the voice of these children and adolescents is heard, respected and acknowledged as part of the expression of hospice and palliative care world-wide. ICPCN Statement of Korea 2005
ICPCN Strategic Activities 1. Advocacy 2. Information-sharing 3. Networking 4. Education 5. Research What is happening & What Canada can do
Where are we in developing pediatric palliative care?
CPC Development October 2011
CPC Development October 2012
PPC Development October 2013
Africa Very few countries with CPC development High burden of disease and neonatal, infant and child mortality (almost half of all childhood deaths) Difficulties with language, unrest, poverty, poor infrastructure, lack of professional staff Conflicting priorities Some excellent and innovative programs
How many children would need palliative care?
Global Atlas of Palliative Care at End of Life 0-14 years 1 262 252 million children worldwide (6% of global need for PC) (Stephen Connor for WHO and WPCA awaiting publication )
Mortality data does not give the true picture we need to look at prevalence as well ICPCN and UNICEF carried out research in 3 countries in sub-saharan Africa Kenya, South Africa & Zimbabwe Established a methodology that can be used in other countries to estimate the global need Results will be launched on the 8 November in London UK
Country level prevalence data obtained from the institute for Health Metrics and Evaluation (IHME) at the University of Washington (lead research group for the Global Burden of Disease Studies) and Mortality data obtained from the World Health Organization s Office of Health Statistics and Informatics (Global Health Estimates). Applied a set of validated assumptions to the prevalence-based estimates, ( mortality based in some cases TB, malnutrition, meningitis and neurological conditions). Interviews with key informants, service providers & stakeholders National reports and repositories.
Estimated Prevalence: Kenya: 120.05 : 10 000 Present coverage 1% UK 32 : 10 000 South Africa: 151.92 : 10 000 Present coverage 4.7 % Zimbabwe 180.63 : 10 000 Present coverage 4.6% (University of Leeds 2012) (UNICEF and ICPCN unpublished research 2013)
Canada to West / Francophone Africa 9 20 million children
Advocacy Working to influence WHO UNICEF UNAIDS in collaboration with the WPCA Advocacy group Collaboration with like-minded INGOS - UICC, World Vision, Human Rights Watch Development of advocacy materials position papers, World Day materials Support training and development in specific countries Identification & Development of effective models
Advocacy project In Malawi & Maharashtra District of India Country co-ordinators appointed within national associations Model PPC programs identified to act as mentors 3 new programs developed in hospitals based on mentor model Advocacy with government to include PPC in policy Children s voices used to influence government PPC now in all nursing and medical curricula in Malawi In draft national policy in both countries
Assistance with Setting up national networks Hospital to hospital mentorship
TOYS URGENTLY NEEDED!
Most requested assistance Education ICPCN Virtual Learning Environment e-learning modules o Pain assessment and management o Communication o End of life care o Grief and Bereavement o Development and play o French, Spanish, Russian, Portuguese, Serbian Mandarin 2014
Still a need for formal teaching and clinical supervision Webinars; e-learning challenges of internet access Lack of materials in languages other than English Practitioners feel isolated and lack support Difficult to implement learning when lack resources and policies
The need for palliative care in Senegal 70 000 Senegalese need palliative care annually Country imported 1 Kg Morphine enough for 200 patients Morphine is only available in Dakar
What can you do to help? Provide a French-speaking team to go to Dakar to train and support the few pediatricians and their teams wanting to promote palliative care for children Provide French materials to supplement the ICPCN e- Learning modules Provide ongoing mentorship and support via e-mail, conference calls, webinars Access support for Senagalese practitioners to attend conferences or to spend time in Canadian programs
Research We lack evidence in the developing world
Delphi study to identify research priorities Talking to children about illness and death Pain assessment 2 Step approach v 3 Step ladder (WHO Guidelines) Models of PPC Spiritual care of children J Downing ICPCN 2012
Include research in a developing country as well as in Canada when developing a protocol Involve a researcher from a developing country Mentor researchers in developing countries Help with publication and dissemination Canada currently has 6 residential children s hospice. Vancouver, Calgary, Toronto area has two, Ottawa, Montreal. Other children s programs in hospitals.
Information E-Hospice international Children s Edition Website Conferences Journals JOIN THE ICPCN ON WWW.ICPCN.ORG And become part of the Global voice for children and families facing lifelimiting and life threatening illnesses