2016; Volume 17, No 6, June
IAHPC Traveling Scholars’ Reports from Malaysia and Tanzania
Pediatric palliative care in Malaysia – addressing training needs
Dr. Lee Ai Chong is a palliative care physician at Hospis Malaysia, Kuala Lumpur, Malaysia. In April 2016, she received an IAHPC Traveling Scholarship to take part in the Education in Palliative and End of Life Care (EPEC) Pediatrics – Train the Trainer Conference held in Auckland, New Zealand. Here, Dr. Chong explains how her attendance at the conference is impacting on her work.
“For our patients to receive good care, we not only need to know what is good care but how to teach others to provide it too.”
Dr. Lee Ai Chong at the EPEC Pediatrics – Train the Trainer Conference in Auckland
Pediatric palliative care in Malaysia is in its infancy – trying to ‘crawl’ and hoping to ‘stand’ very soon. In 2012, Malaysia received a visit from HRH Duchess of Cambridge, Kate Middleton, who delivered her first overseas speech at Hospis Malaysia, and spoke of the importance of delivering the best possible palliative care to children. The Malaysian Health Minister launched the National Pediatric Palliative Care Initiative at the same occasion.
Pediatricians have taken the lead to introduce palliative care in the country. We formed the Malaysian Pediatric Palliative Care reference group (MyPPC) and aim to facilitate the development of clinical services, education and research in pediatric palliative care. We have run workshops in various hospitals and states and raised awareness among fellow pediatricians and other allied healthcare professionals.
The prevalence of children who have palliative care needs has been reported as 32/10,000 children. Based on the 2010 Malaysian census of 7.8 million below the age of 15 years, there would be about 25,000 children who have palliative care needs. This large estimate reminds us of the urgency of ensuring that all Malaysian children who need palliative care can access it, and that all healthcare and allied health professionals have the attitudes, knowledge and skills to provide palliative care to all children with life-limiting illnesses in their care.
Training the trainers
For our patients to receive good care, we not only need to know what is good care but how to teach others to provide it too. EPEC-Pediatrics (Education in Palliative and End of Life Care for Pediatrics) is a comprehensive curriculum designed to address the needs of children and their families and pediatric clinicians. EPEC-Pediatrics ‘Train the trainer’ courses, held in North America started in 2012, but unfortunately they are too costly for those of us in developing countries.
When the EPEC-Pediatrics Trainer course in Auckland was announced (the first such course to be held in the Asia Pacific region), it was an opportunity to attend at a slightly reduced cost. I am grateful to IAHPC for providing me with a travel scholarship to assist me in most of the expenses for this learning opportunity.
Dr. Lee Ai Chong (right) with participants and trainers at the conference
Before the course, we had to complete 18 online modules followed by a two-day face-to-face course in Auckland facilitated by six EPEC-Pediatrics master facilitators. There were 54 participants, from New Zealand, Australia, United Kingdom, Thailand, Singapore and three of us from Malaysia. As well as being an opportunity to reconnect with my previous teachers, colleagues and friends I was also amongst like-minded colleagues. Pediatric palliative care providers are a relatively small network of people and during the two days I realized that we are not alone in the work we do and the challenges we face.
Stimulating and challenging
The EPEC-Pediatrics Trainer course highlighted that effective education should be able to stimulate thoughts, challenge misconceptions and attitudes and result in behavioral change of those whom we teach. It was an opportunity to learn about ‘hooks’ for effective presentations, to increase my understanding on adult learning styles and how to use these skills when preparing for a teaching session. The emphasis throughout the course was on addressing attitudes that may hinder behavioral change that will not benefit patients, creating an environment for knowledge sharing and to ensure skills acquired were demonstrated during the teaching sessions.
The impact of good teaching can be far-reaching. This course has helped me to be more mindful of the quality of my teaching, to have clear learning objectives and to continually assess the quality of care delivered to our patients and families.
Perhaps, if some of us can attend the EPEC-Pediatrics personal development workshops next year, there will be more master facilitators from this region of the world. This could make EPEC-Pediatric trainers courses more affordable to providers in this region, especially the developing nations, and will help address the education needs for quality pediatric palliative care in this region.
Links
Creating hospice partnerships: Tanzania and the United States
In April 2016, Dr. Zebadia Paul Mmbando, Palliative Care Program Manager, Evangelical Lutheran Church in Tanzania (ELCT), received an IAHPC Traveling Scholarship for a collaborative activity with Dr. Kristopher Hartwig at the University of Minnesota/Minneapolis Veterans’ Administration Hospital, US.
My organization’s links with the Foundation for Cancer Care in Tanzania (FCCT) led to my attending FCCT’s symposium in Minneapolis to present a paper on Palliative care for women and children with cancer in Tanzania.
Dr. Zebadia Paul Mmbando (left) with conference participants
This was a wonderful opportunity for networking with other presenters involved in cancer care in the US, meeting new friends and partners. It also gave me the chance co-present a pre-conference workshop with Dr Kristopher Hartwig, and to describe some of the major challenges that I encounter every day in managing more than 20 palliative care implementing facilities in Tanzania.
Overall, 5.1% of Tanzanians aged 15-49 are HIV-positive. However, the prevalence for women is higher (6.2%) than men (3.8%) due to biological, social and cultural reasons (MOHSW, 2015). This prevalence also includes about 160,000 children aged from 15 years. Other specific challenges are:
- Many cancers have increased due to HIV prevalence (eg cervical carcinoma, Kaposi Sarcoma etc).
- In women, cancer of the cervix and breast are the most common types in Tanzania. However, cervical carcinoma represents about 35-40% of all cancer cases, and 55-65% of all cancers in women (mostly young women of reproductive age).
- 35,000 new cancer cases annually (including 2,300 children), most of whom present very late with up to 80% dying in the first year of diagnosis; hence palliative care is mostly the only available option. Some of the causes for late presentation are: long distance from the cancer care facility; inability to meet transport and accommodation costs (Kingham et al. 2013); low awareness and knowledge about cancer especially among the rural, less educated population; cultural limitations (which particularly bar women and children) (Kingham et al. 2013); stigma, myths and misconceptions about cancer treatment options (Brinton et al. 2014).
- Most of our facilities (99%) are located in rural settings with high levels of poverty and illiteracy, which limit patients’ ability to access or afford the cost of their own health care.
- Funding: Currently, hospice and palliative care is not a priority for major funders of health services, eg USAID.
- Health insurance does not reimburse home care in Tanzania (this is likely to be addressed in our new national palliative care policy, which was implemented in January 2016).
- Due to poverty, and the fact that our patients are mostly young adults with children and families who depend on them for financial and economic support, the provision of holistic palliative care to these clients is a huge challenge since they have more needs than our program can meet.
- Morphine syrup and tramadol is the only available opioid for the management of severe pain for patients with palliative and end-of-life conditions, but its importation is also erratic causing frequent stockouts throughout the country.
Dr. Mmbando with co-presenter, Dr. Khristopher Hartwig
New opportunities and ideas gained from Minnesota
- The presentations on research in cancer and palliative care were particularly informative, e.g. the use of oncosurgery, chemotherapy, radiation oncology for palliation, as we limited use of radiation and surgery for palliative reasons in Tanzania.
- Telemedicine and e-medicine can provide useful collaboration with the west for those of us working in a resource-limited setting.
- The importance of partnerships for sustainability – this is especially important for our organization as FCCT is collaborating with Kilimanjaro Christian Medical Center to establish the first cancer treatment centre in Northern Tanzania. Even more partnerships will be required for the establishment and sustainability of comprehensive cancer care.
The new skills and information that I gained in Minnesota will help me to overcome some of the challenges and barriers in my work in Tanzania.
Links
- Dr. Zebadia Paul Mmbando email
- Evangelical Lutheran Church in Tanzania
- Foundation for Cancer Care in Tanzania
Find our more
To find out more about IAHPC’s Traveling Scholarships and other opportunities, please visit our website.