FHSSA and the International Children’s Palliative Care Network conducted a comprehensive assessment to explore successful models of children’s palliative care in Africa.
As part of this effort, 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, Sophie 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., Sophie 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.
Data from the assessment project is currently being analyzed by FHSSA and ICPCN to identify core elements of providing successful pediatric palliative care program in Africa. The project will be featured at ICPCN’s International Conference in Mumbai, India, February 2014; a summary report will be available later this year.
About FHSSA: FHSSA supports compassionate care where the need is great and resources are few. We listen, learn, understand and share.
Our Mission is to build partnerships to enhance compassionate care in Africa. Our Vision is a world where individuals and families facing serious illness, death and grief will experience the best that humankind can offer.
FHSSA connects more than 80 partners from organizations across the US with a hospice in 14 African countries through our Partnership Program to promote comprehensive hospice and palliative care.
Learn more at fhssa.org
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