In the poor neighbourhoods of North Jakarta, there’s a high incidence of HIV and AIDS.
Some children have had the disease since birth, and have lost their parents to it.
Living with HIV/AIDS can sometimes mean a life of pain and discomfort, with painkillers and medical support hard to access. But a small team of nurses from local NGO, Rachel House, is trying to fill the gap, providing home visits to children in need.
Nicole Curby has this story from Jakarta.
Here at a local health care centre in North Jakarta, the room is full of middle-aged women in colourful headscarves.
They are warm, and have a sense of gravitas – the kind of women that are the backbone of neighbourhood life.
There’s a bubble of chatter as they compare notes about their latest role, supporting those with chronic and terminal illness.
One woman asks who she could have contacted when last week, a neighbour needed to get to hospital quickly, but nobody had the means to get him there.
Someone else tells the group about a sick child that needs a lot of nappies. The family can’t afford to buy them, and she asking if there’s some way to help.
The group is being trained by Susi Susilawati, one of six nurses from the NGO, Rachel House.
Susi provides training to hospitals, health care centres, doctors, nurses and volunteers.
And she often works with local communities as well, teaching them how to care for patients with chronic and terminal illness.
“Rachel House’s care is home-based care, community based care. We need to consider a number of supports - society, volunteers, professionals in health care centres, even government institutions,” Susi explained.
“What can they support the patient with? What if the patient is very poor and can’t even afford food? Is there any government aid to help them?”
What Susi does is called palliative care, where nurses work with patients and their families from diagnosis until their end of their journey.
An average day at work for Susi is visiting children with HIV, AIDS and cancer in their homes, to make sure they’re receiving proper medical care and that they’re not in pain.
Amid the steaming heat, and monsoons rains, Susi packs her stethoscope and nurses kit, and heads off on her motorbike.
Tiny homes are hidden amongst a maze of alleyways. Some so small that you can only squeeze through on foot.
Normally, Susi visits two or three patients a day, spending a few hours with each of them and their families.
When I met Susi, we visited 9-year-old Rian, not his real name, in North Jakarta. He’s HIV positive and lives with his grandmother, his aunt, and her family.
His mother died of AIDS four years ago, a not uncommon story, says Susi.
“For several HIV cases, the grandma is the carer, not the mother, because the parents might have passed away.”
“How can we educate the grandma about all these things? From discipline in taking medication, pain management, hygiene and exercise,” asks Susi.
Rachel House helps keep children comfortable and at home with their families – rather than in hospital – for as long as possible.
“Providing palliative care means caring for patients with chronic illnesses, to help ease the symptoms to increase their quality of life.”
“Palliative care plays a big role from start to finish – from diagnosis, treatment, nearing death and post-death. It’s not only physical, but also psychological, social, economical and spiritual.”
Rachel House has provided home visits like this to more than 2,000 families throughout Jakarta over the last 10 years. And while it’s an essential part of the healthcare system in the western world, palliative care is virtually unknown in Indonesia.
“Palliative care I would say is probably in its infancy in Indonesia, not many people know about it,” explains Prita Rifianti, program manager at Rachel House.
“It is not yet in the core curriculum in the training of doctors and nurses and healthcare professionals. Those who know it tend to have a misconception of it, and then reluctance against it.”
So the small NGO Rachel House is taking on the mammoth task of providing palliative care throughout the Indonesian capital.
And while they started out only treating children with HIV/AIDS, it quickly became clear that there was a much wider need.
The task may be epic, but their vision is simple, says Susi.
“Children experiencing pain in their homes may not be receiving care. They often suffer and die in pain. Rachel House’s vision is no more children dying in pain.”
This is the second a two part series on palliative care in Jakarta, part one can be found here