Jakarta, August 14th, 2023 –
With the vision that no child should ever have to live or die in pain, Rachel House has set its mission on establishing a palliative care ecosystem in Indonesia, so that palliative care can be made available and accessible for all children living with serious and life-limiting illnesses.
Palliative care is a specialised medical care and approach that is aimed at optimising the quality of life and mitigating suffering for people living with serious, complex and often terminal illnesses. Established in 2006, Rachel House is the pioneering pediatric palliative care service in Indonesia, providing pain and symptom management for children from some of the most marginalised communities in Jakarta, in the comfort of their own homes, at free of charge.
While Rachel House’s team of highly trained PC doctor and nurses have helped ease the pain and suffering of over 1100 children (since it received its first patient in 2008), we are aware that there are many children across Indonesia that are without access to the care and attention they need, and parents are often alone in coping with the worrying symptoms with no one to turn to for information.
In 2020, supported by Australian Volunteers International (AVI) under the Community Grant Scheme, Rachel House published a guidebook for parents of children living with serious illnesses, to equip them with skills and knowledge to manage challenging symptoms that these children may experience at home. The book, entitled Palliative Care: A Guidebook for Caregivers (Asuhan Paliatif: Buku Panduan Bagi Pelaku Rawat), has been distributed widely to our partner NGOs, primary health clinics and public hospitals in major cities across Indonesia. It is our hope that these organisations can help disseminate the knowledge and information to help parents provide better care for their seriously-ill children at home.
The crisis in health care we witnessed during the pandemic of 2020-2022 opened our eyes to the plight of children and families living in the rural areas across Indonesia, without access to care as they are beyond the easy reach of medical teams. With this demographic in mind, we turned our attention towards producing animated educational videos to provide key information for parents and caregivers of children living with serious illnesses.
We are delighted when AVI agreed to support the ideas and approved the Impact Fund Grant for us to develop the following education materials:
1) Educational material for caregivers
A series of animated videos aimed to provide parents and caregivers with skills and knowledge to help manage symptoms often experienced by seriously ill children. Through these educational videos, we hope these seriously ill children can live with optimal quality of life at home in the loving embrace of their families and loved ones.
2) Educational material for community health workers
A series of training videos and printed booklet designed to equip community health workers with skills and knowledge, to empower them to provide care and assistance with confidence for those who are ill in their community.
3) Educational materials for Health Professionals
As palliative care is still in its infancy in Indonesia, there are few (if any) books available for healthcare professionals on this topic in Bahasa Indonesia. With approval from the authors, we translated and printed the following books in Bahasa Indonesia:
a. A Really Practical Handbook for Palliative Care for Children for Doctors & Nurses Anywhere in the World – by Justin Amery (printed, softcover book)
b. Palliative Care: Handbook for Nurses – by Kerala State Resource Center in Palliative Care (in e-book format)
Australian Volunteers International (AVI) is a non-profit organization supported by the Australian Government through the Department of Foreign Affairs and Trade. They launched the Australian Volunteers Program Impact Fund initiative to support aspects of Gender Equality, Disability and Social Inclusion (GEDSI), to help strengthen the capacity and work of their existing partners.
“The support of Australian Volunteers International over the years has been tremendously important for Rachel House and the development of our service. AVI has seen us through several major milestones in our journey to bring palliative care to the children living with serious illnesses in Indonesia.” Said Lynna Chandra, Rachel House’s Founder. “We are truly grateful that as we cast our eyes to the population beyond the immediate reach of our medical team, we continue to have the trust and support of AVI. We hope these educational materials can bring us closer to the dream of making palliative care available and accessible by all in Indonesia.”
Rachel House is grateful to AVI for its support on this journey towards an Indonesia where no child would ever have to live or die in pain.
Click here to visit Rachel House YouTube Channel and watch the educational videos.
Click here here to download our e-book: Asuhan – Paliatif Buku Pedoman Untuk Perawat.