Findings from the FHSSA and the ICPCN assessment project were presented at ICPCN’s International Conference that began February 10, 2014 in Mumbai, India. February 2014. A summary report will be available from FHSSA later this year.
“FHSSA has been committed to supporting hospice and palliative care programs in Sub-Saharan Africa since 1999. We recognize the need to learn more about pediatric palliative care in Africa and are encouraged by our work with ICPCN. We are inspired that our collaboration will help us in identifying successful models of care that can be replicated in order for all children to have the best quality of life possible,” said John Mastrojohn, III, Executive Director of FHSSA.
As part of the assessment project, an online survey was created and distributed to various children’s palliative care organizations throughout Africa. In addition, a focus group was held as a follow up to the online survey during the African Palliative Care Association and Hospice Palliative Care Association of South Africa’s Palliative Care Conference in Johannesburg, South Africa in September 2013. The focus group was facilitated by Jeremy Taglieri, FHSSA Coordinator, and Sophie Kieffer, a FHSSA volunteer.
After the conference, Kieffer visited eight pediatric palliative care programs in South Africa, Malawi, Kenya and Uganda to conduct in-depth interviews.
Upon her return to the U.S., Kieffer stated:
“I learned so much and met such great people. The more places I visited the more I saw the need for this cause with their being so many sick children and so many overcrowded hospitals, and those are the ones that have at least made it to the hospital. Home visits are so minimal in most of these areas due to lack of funding, distance and the difficult roads, especially in the rainy season.”
“While visiting a grandmother who had lost her granddaughter in a small village, the whole community gathered to greet us. As we talked to the group and asked if there were any questions, one woman asked ‘What’s cancer?’ It reminded me how much we take for granted even the most basic information. I’m proud to be a part of this extremely necessary and often under-appreciated work,” said Kieffer.
Data from the assessment project is currently being analyzed by FHSSA and ICPCN to identify core elements of providing successful pediatric palliative care programming in Africa.