The Voice of Youth in Advocating for Pediatric Palliative Care

Students of Sekolah Pelita Harapan (Pelita Harapan School or “SPH”) in Karawaci, Jakarta recently participated in 30 Hour Famine, an event where the students fasted for 30 hours to get a glimpse of what it was like to be without a basic necessity. The 30 Hour Famine is a World Vision program that seeks to unite youths around the world to raise awareness about the plight of children who live in circumstances less fortunate than themselves in the hope of eradicating poverty.

For the students at SPH, this year’s focus was children living with HIV/AIDS and Rachel House was invited to speak about the need for palliative care for children in Indonesia in general, and for children living with HIV/AIDS in particular.

 

 

Rachel House shared the current initiatives that are being implemented to deliver care to children living with HIV/AIDS and other life-limiting conditions, and presented the challenges that lay ahead in a country where palliative care is not yet an integral part of Indonesia’s healthcare plan. The students demonstrated a keen interest, asking a host of questions about Rachel House’s advocacy plans at the local and national level to ensure the right of children to live with dignity and without pain can be achieved.

At the end of the presentation, Rachel House facilitated a group activity to encourage the students to think about ways to raise awareness for palliative care in their community and how they can lend their hands to help alleviate the suffering of children living with life-limiting conditions. Divided into groups of three, the students were asked several questions based on a scenario about a young boy living with HIV.

“If you were his neighbor, what could you do as an individual, to provide support to this boy and his family?”

“As a community, how could you provide support to this boy and his family?”

“As a policy maker, what could you do to ensure palliative care is provided for this boy and his family?”

 

SPH 30H Famine - 2
The responses received from the students were astounding. They came up with inspiring ways in which individuals, communities and leaders can collaborate to ensure palliative care needs for children and their families are met. Listening to their ideas confirmed our belief in the power of the voice of youth to advocate for palliative care in Indonesia.

Rachel House is inspired by the young people with a vision to create a better place for children who are marginalized; we admire their passion, enthusiasm and their willingness to contribute towards a better world. We are grateful to the students of SPH for their fundraising efforts and support for the children and families of Rachel House.