Children
 Indonesia
Project #10284

Pediatric Hospice for the poor in Indonesia

by Yayasan Rumah Rachel ('Rachel House')
Vetted
Teguh & Dadan waiting at the doctor
Teguh & Dadan waiting at the doctor's clinic

Have you ever wondered what it is like for Rachel House’s nurses caring for children living with life-threatening illnesses in and around the metropolitan city of Jakarta? Then read this story by Dadan, one of Rachel House’s nurses, and his journey in bringing love and care to Teguh, a five-year old boy living with HIV.

 

“The first time I visited Teguh at his home, he refused to speak, or even look at me. But of course I did not give up. I asked him to show me some of his stuffed animals and played with him until, eventually, he came around and allowed me to examine him.

Because Teguh’s immune system was severely compromised by the HIV infection, he constantly suffered from conditions such as diarrhea, fever, and coughing. He was also malnourished, and was often too weak to play as other children do. As his nurse, I made sure that, one by one, Teguh’s symptoms were managed and that he was comfortable at home. It was not easy, because Teguh had not started taking HIV medications. These medications, often called ARV or antiretroviral, work by keeping the HIV virus level in the body low. This in turn helps the body’s immune system to recover and function as it should. However, for the ARV medications to be effective, they have to be taken in a discipline manner, and that means every day at the exact same time. If that does not happen, the virus will become resistant to the medication. Unfortunately for Teguh, the doctors would not prescribe the ARV medication for him because there was no one at home who could administer and monitor his medication.

Teguh’s mother had died when he was three years old and his father had abandoned him. He was living with his uncle, who was busy working and did not pay a lot of attention to him. Day in day out, Teguh spent most of his time alone in the house. Every now and then his grandfather, a garbage collector, would visit him after work, bringing him something to eat. But mostly, Teguh just looked after himself.

As time passed, I came to be more than a nurse to Teguh. I became a friend. I would sometimes bring him his favourite cartoons, such as BoBoiBoy, Thomas the Tank Engine, and Power Rangers. Together with other Rachel House volunteers, we would keep him company and watch the cartoons.

Every time I was getting ready to leave, Teguh would get upset and angrily throw his car toy at me. For a child who was always on his own and never felt loved, he must have been very happy that there was someone in his life who spend time with him and played with him.

 

One day, Teguh told me that he wanted to see a real tiger. I realized after some discussion that he had never gone for an outing in his entire life! So we made plans to go to the zoo together, which got him really excited.

On the day itself, he woke up very early, showered, got dressed, and by 6 am, he was all ready to go! Together with a few of Rachel House’s volunteers, we drove to Taman Safari Zoo in Bogor. As it was a Saturday, the traffic was congested but not once did Teguh complain. It was the happiest I’ve ever seen him, and certainly the most talkative and energetic:

“What kind of car is that?”

“Are we there yet?”

“How long before we get there?”

The car was filled with joy and laughter.

It was a big day and a long journey to the zoo and back, but when I saw the sheer wonder and delight on Teguh’s face, I knew it was all worth it. He marveled at everything he saw. When he finally saw the tiger, he asked, “Uncle Dadan, why is the cat so big?!”

Teguh passed away less than two weeks after the trip to the zoo. A few of us went to his funeral to see him buried alongside his mother. The sounds of his laughter and the memory of the joy on his face left a huge imprint in my heart, and in the hearts of many at Rachel House. Although I am sad that he had lived such a short life, I am comforted by the knowledge that we had brought love and happiness to the brief time he was under our care – and this gives me courage and determination to continue my work as a pediatric palliative care nurse at Rachel House.”

Teguh at the Aquarium
Teguh at the Aquarium
Teguh on his 1st & last trip to the zoo
Teguh on his 1st & last trip to the zoo
CNPC trained volunteers in action
CNPC trained volunteers in action

While caring for children living with life-limiting conditions remain Rachel House's core mission, we realised that we can extend our reach to many more people in need by rallying the support of community members ("kader"). And hence, in 2013 we launched a community-based program named Community Network in Palliative Care ("CNPC") that provides basic palliative care training to community members and primary health professionals; where collaboration is cultivated and forged between them to provide care and assistance to those who are ill in their community --> thereby making sure that no one needs to live in pain, unloved and without care.

Watch these amazing everyday heroes in action in this beautifully and lovingly shot movie by Anatman Pictures who gifted their time and skills to bring alive stories too often hidden and untold.

Links:

2015 - Impact
2015 - Impact

Making Palliative Care Available and Accessible for All

2015 has been a fabulous year of collaborative impact. After 9 years of beating the palliative care drums alone, the year finally saw many in the medical industry in Indonesia coming to embrace the concept. This phenomena is due in no small part to the recognition of the unmet needs of the quickly rising number of people living with chronic diseases. A problem caused by the insufficient number of trained medical professionals in Indonesia, which in turn brings to question the ability of the recently established Universal Health Coverage to adequately deliver health care for all.

Rising to the Challenge: To Deliver a World-Class Palliative Care

Working in collaboration with Singapore International Foundation (“SIF”), and Cancer Foundation (YKI DKI), a 3-year palliative care training program was launched in February for medical professionals from 12 public hospitals. The aim is to ensure the availability of palliative care for all in the public hospital system.

At the primary health setting where many remains without access to healthcare, we intensified our efforts to mobilise and train community volunteers to provide care and assistance for those who are sick at home. Community Network in Palliative Care (CNPC) Program forges collaboration between trained medical professionals and volunteers to help deliver care to those in need.

Recognising the urgent need for trained palliative care nurses, we launched the  Clinic-in-a-Box program to equip nurses with home-based palliative care skills. The maiden 6-week course was launched in October this year in collaboration with Padjadjaran University in Bandung.

Gratefulness

Our journey to establish a palliative care ecosystem in Indonesia has been paved with awesome volunteers and collaborative partners, generous and faithful supporters and donors. We are grateful to all whose continued support has helped bring us closer to our vision that no child should ever have to die in pain. Thank you. 

April 2014 - giving birth to the idea
April 2014 - giving birth to the idea

In June 2014, we posted a story on GlobalGiving about the “Groundbreaking Roundtable Discussion” initiated by Rachel House to explore alternative pathways to introduce palliative care in the nursing curriculum in Indonesia. This is part of Rachel House’s hope of training a new generation of nurses equipped with palliative care and homecare skills, to ensure the availability and accessibility of palliative care in Indonesia.

 

We are pleased to announce that on 1st October 2015, Rachel House launched its very first Clinic-in-a-Box training at University Padjadjaran (UNPAD) in Bandung. This is an important milestone in the development of palliative care in Indonesia. The 6-week course will equip nurses in home-based palliative care skills and financial literacy, to help empower the nurses to deliver palliative care to patients living with life-limiting conditions, including those at home.

 

The pioneering batch of 22 participants comprises mainly lecturers from nursing faculties across West Java. With their hearts opened and passion awakened for palliative care, these lecturers will go on to touch the lives of many young nurses in Indonesia to encourage each to be the advocate for their patients.

Clinic-in-a-Box launched on 1 Oct 2015
Clinic-in-a-Box launched on 1 Oct 2015
Building skills & passion @ Clinic-in-a-Box
Building skills & passion @ Clinic-in-a-Box
Encouraging teamwork towards patient-centric care
Encouraging teamwork towards patient-centric care

One and a half years ago, a boy started to lose his ability to move. 

One and a half years ago, the boy was diagnosed with HIV.

One and a half years ago, Rachel House was introduced to the boy.

His name is Ardi. He is seven years old. The HIV virus had compromised his immune system and caused neurologic complications. By the time Ardi was admitted to Rachel House, he had lost his ability to see, to hear, to speak, to eat and to walk. His limbs were contorted in awkward angles while he spent his days lying immobile in bed.

The “bed”, which is really a mattress, shared with his parents, his brother and his two sisters every night in a three-by-four rented room. Whenever our nurses visited, they would often find Ardi surrounded by his sisters, who continued to look after him in the most caring manner; they played and joked with him, and caringly wiped the saliva that had dribbled down his chin due to the facial paralysis.

Ardi’s father continued to harbor high hopes for him. He believed, with all of his heart, that Ardi will one day regain mobility and will return to school. Ardi had been his pride and joy; one of the top students in his class, trophies and awards lined the walls of the small room.

Ardi was referred to Rachel House to help manage the symptoms that had compromised his quality of life. Rachel House’s nurses supported Ardi’s parents with the essential skills and knowledge to ensure proper administering of medications, effective ways of managing Ardi’s feeding (nasogastric) tube, methods of easing his breathing (complicated by lung Tuberculosis), and physiotherapy exercises to help Ardi regain his strength and movement. All the big and small things that would help make Ardi’s days just a little bit easier.

But of course, the nurses’ work extends beyond just the patient. With other children to raise, Ardi’s parents needed emotional support, care and compassion; with the additional expense of Ardi’s treatment, his father had to work twice as hard to support the family. Our nurses became their friends, their trusted confidants, with whom they shared their grief and broken dreams.

A doctor once told Ardi’s parents that his paralysis was irreversible.

“But I have faith,” the father said. And that faith gave them courage. Physiotherapy was an arduous journey; with progress so slow it at times tested the father’s conviction. But little by little, Ardi’s conditions improved.

Today, Ardi is able to sit up on his own, and even stand up with support. He has regained most of his hearing and some of his sight; he is now able to watch television with his sisters, laugh at cartoon or some random celebrity gossip show. Ardi is a living proof that a father's love and faith, combined with compassionate care and appropriate treatment, can move mountain. Being HIV-positive does not mean that all is lost for these children; and it definitely does not mean that they do not deserve to live life to the fullest surrounded by the people who love them.

 

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 or by subscribing to this project's RSS feed.

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: http:/​/​www.rachel-house.org
Project Leader:
Lynna Chandra
Jakarta, Indonesia

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