Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
Play Video
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children

The Australian Broadcasting Corporation's news team in Indonesia recently spent a day with nurse Ana to see first hand the work of Rachel House - providing palliative care to children living with serious and terminal illnesses in some of the most marginalised communities in Jakarta.

It's a beautifully told story, which gets to the heart of the work of palliative care nurses, providing not just medical but emotional and social support to seriously-ill children and their families. You can watch the TV news clip here - Helping to ease the pain of Jakarta's terminally ill children - or read the full story below.

It's thanks to support from donors like you that Ana and the rest of our nursing team are able to continue helping seriously-ill children in need. Children living with serious illnesses like cancer and HIV AIDS from some of the poorest communities in Jakarta. So thank you for your support.

Thanks,

Barry

 

 

Australian-trained nurse helping to ease the pain of Jakarta’s terminally ill children

Jakarta nurse Ana walks beside the black water of one of the city’s many canals and navigates through a labyrinth of narrow lanes.

She stops outside a small white-walled home with laundry hanging above the door, and is met warmly by the young mother who lives there who welcomes her into the dark interior.

She’s there to help a terminally ill two-year-old girl.

Raihana has cancer of the retina. She’s tiny — and seems even smaller with her left eye masked by a large white bandage.

Raihana has just had chemotherapy but the cancer has spread to her brain and there’s nothing more surgeons can do.

This is when Ana’s work begins.

She’s an Australian-trained palliative care nurse whose job is to make this awful time easier for Raihana and her family.

PHOTO: Ana says she copes with her “heartbreaking” job by talking to friends. (ABC News: Phil Hemingway )

Ana plays and sings with the little girl, who knows the nurse from three previous visits.

Raihana smiles and laughs and lets Ana examine her.

It’s an easy medical check-up for the toddler — a painless moment that could have otherwise been so difficult.

Normally Raihana’s medical visits would involve an uncomfortable trip through Jakarta traffic to a medical clinic and a long wait to see a health worker for a few short minutes.

“By visiting the house I could spend one hour talking to the family, apart from doing the physical assessment,” Ana says.

PHOTO: Raihana’s cancer has spread to her brain. (ABC News: Phil Hemingway)

“They can share everything they would like to share. Their feelings, their hopes and also about the child’s condition. If they go to hospital [they] probably won’t get that opportunity.”

Today Raihana’s doing well. There’s no infection and the last round of chemotherapy has not given her diarrhoea.

This kind of home visit is extremely rare in Indonesia.

Ana works for a Jakarta-based charity, Rachel House, that says there are about 700,000 children in Indonesian who need palliative care — but less than 1 per cent receive it.

“Our patients can feel more comfortable in their family home,” Rachel House’s Barry Dunning, who is in Indonesia as part of an Australian government volunteering program, says.

“It’s a huge challenge getting to hospitals. Indonesia does have a form of universal health care but accessing those services can be very difficult, particularly if [a family] come from a very low-income background.”

Raihana’s mother, Fatma, says Ana’s visit is valuable to the family.

“It’s very helpful and I know more now that I didn’t understand before,” she said.

PHOTO: Ana treats Raihana, who has cancer in her retina. (ABC News: Phil Hemingway)

This work takes a toll on Ana, who spends every day working with dying children.

“You know that at some point the child might die, so you have to prepare the family for that time, and you have to ensure their wishes, their hopes can be fulfilled before the child dies,” she says.

“To be honest this is a heartbreaking job actually.

“So very often I would be very sad every time I come home from a patient’s house. But this time because Raihana’s condition is very good, it’s not really sad.

Ana says she talks to friends and people close to her to manage stress.

“Whenever I feel so frustrated about the child’s condition, I will do self care, like listening to music. I do everything that makes me feel better,” she said.

Links:

Share on Twitter Share on Facebook

College student and budding photographer, Alfiano Sutianto, recently spent time with our Community Network in Palliative Care trained volunteers in North Jakarta. Alfiano, who is from Depok (South of Jakarta), shares his story and photos below.

My name is Alfiano and I am a college student in Central Jakarta. My daily activities are usually pretty normal and unremarkable of students like me - studying, attending meetings, eating and chilling with my friends. Recently, however, I decided I wanted to experience something different and more rewarding in my life. So I decided to volunteer at Rachel House* as a photographer and was assigned to its North Jakarta community-based program where they provide basic palliative care training to community members (mostly women). The program is called Community Network in Palliative Care, or CNPC.

On my first day, I was exposed to the harsh reality for children and adults living with serious illnesses, and learned why palliative care* is important. Honestly, I never thought that there was an NGO in Jakarta that allocated its limited resources to teach and equip community members with skills to support and care for people living with serious illnesses. Hundreds of women volunteers have been trained under this program and signed up as CNPC volunteers.

During my time with the CNPC team - Ibu Susi (a palliative care nurse), Ibu Yus and Bapak Nando - I met with volunteers from nearby communities of Tanjung Priok. These women volunteers are known as ‘ibu-ibu kader’. We heard from these women about the health condition of their patients, who are essentially their neighbours. It was so interesting. Interesting doesn’t necessarily mean happy stories; in fact, many can be categorized as tragic. It surprised me to know how common these stories of tragedies were in the lives of people living with serious illnesses; and in a community so close to where I live and study in central Jakarta.

On the second day, I visited a patient’s house near the Puskesmas (Primary Health Clinic) in the Lagoa neighbourhood. This is when things really got to me. When we (Ibu Yus and some of the ibu-ibu kader) met with the patient, she started crying. She was very grateful that we came to her house and were checking in on her and asking about her health. Still single, she lives with her cousin in a house with very limited space. She has been diagnosed with stroke several months ago.

Right then I thought of my family. “What if one day, they are diagnosed with life-threatening diseases? What support would I give? Who would stay in touch and be there when the going gets tough? It may sound pretty cliché, but these questions were running through my mind right there at the patient’s home. It must be so hard when you are sick and no one is asking about your day, or even your condition.

I was holding back my tears. Maybe, as a millennial living in the middle of a big cosmopolitan city, I have been too busy with myself, trying to make the most of this crazy city. I never stopped to think about other people that might need my help.

Maybe I can’t do much to help people’s financial problems right now; but Rachel House taught me that financial problem isn’t the only problem. Sometimes, someone just needs to be asked a simple question like, “Hey, how are you feeling?” 

*Rachel House is a not-for-profit organisation established in 2006 to provide home-based palliative care for children living with serious illnesses such as cancer and HIV.

*Palliative Care is a specialised medical care providing pain relief and psychosocial support to patients and their families so that they can live with joy and dignity with optimal quality of life.

Share on Twitter Share on Facebook

Rachel House was founded with a simple, albeit seemingly impossible dream: an Indonesia where no child would ever have to live or die in pain. Thanks to the generous support of our partners and donors, combined with the boundless passion and commitment of our staff and volunteers, thousands of seriously ill children and family members have benefited from palliative care, allowing these children to live with joy and free from pain.

Palliative care for all

In 2017, disseminating palliative care knowledge continued to be a key focus for Rachel House; from medical professionals to community members, each playing an important role in the tapestry of the palliative care ecosystem in Indonesia, to help ensure optimal quality of life for every child living with life-limiting illnesses.

Clinic-in-a-Box, our accredited palliative care training program had over 700 medical professionals attending the courses this year, equipping them with skills that will help add life to their seriously ill patients.

In the community, hundreds of volunteers trained under our Community Network in Palliative Care (CNPC) program. Our volunteers continued to work closely with primary health clinics to bring care and support to members of their community living with chronic and terminal illnesses. We believe that the sheer dedication and commitment of these trained CNPC volunteers are paving the way towards a sustained community-based palliative care in their neighborhoods, and one day soon, in Indonesia.

In August this year, we concluded the second phase of our partnership with SIF (Singapore International Foundation) to enhance palliative care knowledge in Indonesia. In the largest palliative care training of its kind in Indonesia delivered in collaboration with YKI (Indonesia Cancer Foundation), over 80 medical professionals from 12 public hospitals in Jakarta were able to take knowledge back to their hospitals and raise their voice towards a pain-free Indonesia.

In the New Year, Clinic-in-a-Box and CNPC Programs will continue to forge ahead to bring palliative care knowledge to many others to help nurture and shape an Indonesia-wide palliative care ecosystem. 

Giving Voice to Palliative Care

In October, thousands joined us to shine the spotlight on palliative care on International Children’s Palliative Care Day. Rachel House’s giant Living Wall exhibition - hosted generously by CITOS Mall and sponsored by faithful donors - celebrated 1600 dreams over the 3-day weekend. Thousands joined in online to give voice to palliative care, including online influencers Julia Estelle, Shanty Paredes and Joko Anwar, generating over 3 million social media impressions for #IfIHadOneMoreDay.

Leadership & Palliative Care

Finally, in recognition of her contribution to making palliative care available to all in Indonesia, and particularly for children, our founder - Lynna Chandra - received the distinguished Presidential Pancasila “Achievement Icon” award in August.

While we celebrate the award, we acknowledge how much more still needs to be done. For every child and their family who are assured of care in the most harrowing times of their lives, we know there are hundreds more who are suffering and with little access to pain management.

We would like to invite you to join us in this vital work to help bring palliative care to all so that no child need to ever live or die in pain. 

With gratitude, joy and hope,
Kartika Kurniasari
CEO 

Share on Twitter Share on Facebook
1600 woven dreams: If I had one more day...
1600 woven dreams: If I had one more day...

Rachel House recently celebrated its 11th Anniversary with The Living Wall installation at a public mall in Jakarta. The Living Wall invited visitors to Cilandak Town Square (CITOS) mall to ponder and reflect on what they would do if they had one more day to live. Over 1600 people shared their dreams on the five giant walls; each taking a moment to reflect on the preciousness of life, allowing themselves the blessings of gratefulness.

Wrapped around the giant walls were stories of some children who had shared their joys and their final days with Rachel House. At this event, we celebrated the lives of these courageous souls, who have inspired and moved us, and, most of all, committed us to this path to help add life to every child’s remaining days.

We were joined by the parents of some of these children who have become part of Rachel House’s family. They came and saw the memory of their children on The Living Wall, they spoke with passion of the right of every child to live with joy and dignity, and free from pain. We took photos together, under the watchful presence of their little angels, in shared memory of a storied journey.

The three days of blessings saw people from all walks of life chipping in to support children living with life-limiting illnesses. A 16-year old girl from British School Jakarta ran a head-shaving fundraising campaign to show solidarity with the children who lose their hair, and so much more, to life-limiting illnesses like cancer and HIV. Well-recognised and celebrated Indonesian personalities lent their voices and influence to raise public awareness of the plight of children living with serious illnesses, to help ensure that no child is left to suffer.

As press members gathered around the Living Walls to hear Ibu Yuni – the mother of former Rachel House patient Rangga, Maya Hasan – the renowned harpist and certified IHTP (International Harp Therapy Program) practitioner, dr Edi Tehuteru – a pediatric oncologist & former palliative care consultant for Rachel House, and Kartika Kurniasari – Rachel House’s CEO, share what palliative care means to each of them, we were reminded of the enormous challenge that remains real and present for Indonesia.

Close to 700,000 children are living with life-limiting illnesses and in pain in Indonesia. Sadly, less than 1% of these children currently have access to palliative care.

We know we have our work cut out for us, but until such time as no Indonesian child ever has to live or die in pain, our work is not finished.

Sharing the courageous stories of our children
Sharing the courageous stories of our children
Nara & dolphin, watching over her beloved mother
Nara & dolphin, watching over her beloved mother
Michelle showing her solidarity with the children
Michelle showing her solidarity with the children
Celebrity Andien lent her voice to the cause
Celebrity Andien lent her voice to the cause
Share on Twitter Share on Facebook
Our founder at the Award Ceremony
Our founder at the Award Ceremony

Rachel House receives prestigious Presidential Award

On 21st August 2017, Rachel House received the Presidential Achievement Award in recognition of its contribution in making available palliative care to children of Indonesia. The prestigious presidential award, held as part of the celebration of Indonesia's 72nd Independence Day, celebrates the achievements of 72 "Achievement Icons" from across Indonesia.

Pancasila, the guiding philosophy of Indonesia, guarantees the right to healthcare under its fifth principle, "social justices for all Indonesians". Rachel House's founder, Lynna Chandra, urged the Indonesian government to play an active role in ensuring the successful implementation of palliative care by issuing the guidelines and policies for palliative care to be included as a critical component of the national health system. 

Clinic-in-a-Box

To ensure good pain and symptom relief are available for all in Indonesia, medical professionals must be equipped with impeccable skills that put patients’ quality of life as a priority. Rachel House's Clinic-in-a-Box training program, now in its third year, continues to provide nurses with the skills and knowledge to effectively manage patients' pain and symptoms. Among other things, participants are taught to accurately assess and manage pain, in all its various facets ranging from physical, emotional, psychosocial and spiritual; how to communicate with patients and families with care and compassion; and the routine yet critical skills of maintaining oral hygiene and finding creative ways to ensure healthy nutrition throughout the patient’s journey.

As an important part of the Clinic-in-a-Box training, participants learned how to care for the emotional pain of patients and their families who are facing serious or terminal illnesses. Many healthcare professionals are ill-equipped to deal with death, grief, and bereavement. In Clinic-in-a-Box, nurses have the rare opportunity to explore their own attitudes towards death and dying, as well as to improve their skills in providing emotional and spiritual support for their patients.

Nurse Iin, from one of the largest national hospitals in Indonesia said, “This training truly nurtured our souls. Palliative care is the essence of nursing care. Yes, we learned about nursing, but even more than that, we learned how to care for our patients with compassion in our hearts.” 

Nurses practicing clinical skills in class
Nurses practicing clinical skills in class
"Trust and compassion are key in patient care"
"Trust and compassion are key in patient care"
Share on Twitter Share on Facebook
 

About Project Reports

Project Reports on GlobalGiving are posted directly to globalgiving.org by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website:
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
 
689 donations
$18,779 to go
Donate Now
lock
Donating through GlobalGiving is safe, secure, and easy with many payment options to choose from. View other ways to donate

Yayasan Rumah Rachel ('Rachel House') has earned this recognition on GlobalGiving:

Help raise money!

Support this important cause by creating a personalized fundraising page.

Start a Fundraiser

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence

Snorkeler
Our
Impact

Woman Holding a Gift Card
Give
Gift Cards

Young Girl with a Bicycle
GlobalGiving
Guarantee

Sign up for the GlobalGiving Newsletter

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.