BANGKOK – For over 10 years, the Human Development Foundation – Mercy Centre’s Aids hospice was the first, largest and only free Aids hospice in Bangkok, Thailand. At first, Mercy was known as a dumping ground for dying people. Then we changed our general policy and, apart from the truly indigent, only accepted patients with their relatives’ involvement. Over the years as the treatments improved, our hospice became a place of hope for the future where people could recover and go back to the community and their family.
We learned that HIV is not about one person, it’s about the whole family. We created three-way partnerships between our hospice staff, patients and their families. We asked the families to share in the hospice care of their family members, and in return, we provided counselling to the families and taught them home-care skills. The patients also agreed that they would contribute to the maintenance of the hospice as much as they were able to.
It often took several months of counselling, sometimes even years, to unite families and patients and bring them home. It was rarely easy. As our home-care programme expanded, we were able to close our hospice in 2012 and now all our Aids care is done in the community.
Our clients come to us through the communities, often via our 20-plus schools and kindergartens in the slums. The teachers know the whole community. We are also well-known and trusted because of our other outreach activities, including elderly care and legal aid. Government clinics, hospitals and the temples also refer people to us.
Currently we care for 323 families. Every month we make over 90 visits to 50 people living with HIV. Our team comprises five homecare staff, two phone counsellors and a database manager, all of whom are people living with HIV.
When we first started the home care programme in 2002, many families we visited asked: “Are you HIV-positive? If not, how can you know what I’m living with?” In response, in 2004 we introduced a team of caregivers living with HIV.
Then Family Health International and USAid got involved. FHI is very good at capacity-building and with their support we were able to develop a home-based care programme that assesses our beneficiaries’ physical and psychological state and ensures they have access to anti-viral medications and proper healthcare. We don’t just look after a poor person who has HIV, we assess their whole family situation, what they eat, where they live, their jobs, whether they are facing discrimination, and how we can assist their partner or children. If they are anxious about going to the hospital, we go with them. We offer both practical and emotional support.
By 2011 we were able to start sharing what we had learned. We’d done a lot of train-the-trainer work with FHI and were keen to share our knowledge and experience of working with people living with HIV, their families and communities. Our first home-care workshop was at the Thai-Burmese border with Mae Tao Clinic in Mae Sot. We worked closely with Dr Cynthia Maung (the clinic’s founder) to understand their needs and design a programme that met them.
Before we conduct our workshops, we make on-site visits and evaluations. We always meet local organisations already doing HIV programmes to show our respect and ask for their assistance.
In 2011, Princess Ashi Kesang Wangmo Wangchuck of Bhutan visited our Mercy Centre for two weeks to learn about our approach to HIV/Aids community-based care. Later she invited us to run a community home-based care workshop for the first HIV/Aids group in Bhutan. Since then we have also worked with Population Services International in Pattaya, Thailand to run workshops for transgender groups, and most recently with the Lao Network of People Living with HIV and Aids.
Our on-site workshops are tailored to the needs of each organisation, and they are always interactive, with a lot of role-play. Then we go on home visits with participants to make sure they know how to conduct the visit and keep proper records. We help them understand that each visit needs to provide all-inclusive support – from therapeutic support for their illness to total caring within their home and family environment.
Today our greatest homecare challenge remains in trying to unite patients and families. We have learned a lot from our experience, but there is still much road to travel and also much to be hopeful for.
Usanee Janngeon, is director of HDF-Mercy Centre in Bangkok, Thailand