2018; Volume 19, No 7, July
This Traveling Scholars group reports on two recent events — the 3rd International Children’s Palliative Care Network (ICPCN) Conference in South Africa and the 10th European Association for Palliative Care (EAPC) World Congress in Switzerland — as well as the 12th Asia Pacific Hospice Conference in 2017.
Improving Pain Management
Mary Haule, left, and Theodora Ndunguru.
Mary Haule, Tanzania
In my setting, the majority of children and adults with cancer report in late stage, so there is no cure for them and the only option is palliative care. However, the major problem facing them is pain and psychosocial problems. For these patients (to paraphrase Hippocrates), cure is sometimes, relief is often, and comfort should be always.
Physical pain is the number one problem for the majority of cancer patients, but pain management is inadequate. Health professionals do not differentiate between nociceptive pain and neuropathic pain. Because they are managed in the same way, patients continue to suffer to the end of life. The knowledge gained from the 3rd International Children’s Palliative Care Network (ICPCN) Conference will help to improve pain management in my cancer patients, and my colleagues will gain knowledge from my experience. Also, I will work closely with a pharmacist to make sure we receive the required medicines for pain management. Moreover, I will ensure that pain is managed according to the WHO three-step ladder for pain relief.
Conference Invigorated My Determination to Act
Piyush Gupta, India
An amendment to the Narcotic Drugs and Psychotropic Substances Act in India, to improve access to opioids for medicinal purposes, was passed into law in 2014, but action is lacking as most State Governments are not conversant with the new law. The ICPCN Conference has charged me fully to take action. I have already started, by making appointments with relevant stakeholders.
As a strong advocate of palliative care, I am more determined than ever to integrate what I have learned about palliative care for children in future campaigns across India. It needs to be discussed!
The IAHPC Travelling Scholarship experience is just wonderful. It was a memorable, and highly meaningful, experience.
Part of the 10-member IAHPC Traveling Scholars Group at the ICPCN Conference in Durban, South Africa, including (far left) Martin Mindequía, Piyush Gupta, and (far right) Pradnya Talawadekar and Esther Nafula Wekesa.
Challenges in Striving to Treat Children
Pradnya Talawadekar, India
I am working with Tata Memorial Hospital in Mumbai, which is the pioneer institute for cancer research, education, and service delivery. There is a well-developed department of palliative medicine so that patients and their caregivers can access services to improve their quality of life. This department has been conducting sensitization programs and training sessions for various cadres of health care providers.
The advocacy efforts taken by the department has helped to accomplish the passing of a government resolution to integrate palliative care into the health care system. In spite of these efforts, children’s palliative care is still not available to children with non-oncological conditions. It is a challenge to sensitize pediatricians who do not want to work in collaboration with palliative care providers. Health care providers need to understand the need to provide palliative care.
Sessions by Sister Francis Dominica and Dr. M.R. Rajagopal were inspiring. Learning points from this conference are to advocate palliative care at every level — from policy makers to the general population.
Scholarship Allowed Me to Present a Workshop
Martin Mindequía with an image from his workshop on the tie between health care worker and patient.
Martin I. Mindequía, Argentina
I am deeply grateful to IAHPC for giving me a travelling scholarship to attend the ICPCN Conference in Durban, South Africa, where I presented the workshop titled, ‘Accompanying the Suffering Stranger,’ an aware exploration of the existing genuine tie between the health worker and the patient.
This experience has allowed me to create new ties to continue growing into a global network, with the objective of providing the highest standards of care to those patients with life-limiting illnesses and their families. Furthermore, all the materials and information I collected about palliative care´s new treatments and patient-approach models will be shared with my colleagues through team meetings.
Ready for the Next Phase: Training staff
Dr. Esther Nafula Wekesa, left, with her poster, ‘Integration of Pediatric Palliative Care in M.P. Shah Hospital: A pilot project.’
Esther Nafula Wekesa, Kenya
Attending the ICPCN Conference taught me about: the state of pediatric palliative care in the world; strategies being used by others to enhance children’s palliative care; current developments, such as perinatal palliative care; and how to care for children and their families when death is near.
In my country, children are often referred late to palliative care, as many physicians and health care providers believe this service is not needed by ailing children. Only one facility offers pediatric palliative care in a country with a population of more than 40 million people, while 67 centers offer adult palliative care. The experience gave me encouragement to inspire others in providing pediatric palliative care. The conference will help when enacting the next phase of my project, which is to train staff on pediatric palliative care and establish regular clinics to treat children needing palliative care.
Concrete Guidance for Conducting Research
Eve Namisango, Uganda
Eve Namisango
Lack of clarity on standard practices for qualitative research methods has been a challenge for a while. We used the EAPC Conference qualitative research workshop session to discuss how best one can work this and we received a lot of input from the leading experts in this field. For example, we got good guidance on how to address the sample size issue and best practices for protocol development. I feel more prepared to design, implement and publish from qualitative studies and this has been useful for me in making final touches on my qualitative manuscript. I am already using some of the methodological recommendations for undertaking research in palliative care. I learned more about networking and we are now bridging our lack of financial and human resources gap by using this strategy. We are working with partners to apply for grants, implement studies, and disseminate our findings.
I used this as a platform to take a comprehensive a snapshot of the advances in research and versatile methodological approaches. I attended several methodology specific workshops, for example, including one on best practices for conducting qualitative research. I got to know about the recent recommendations for protocol development and recommendations for sample size estimation.
The fact that my oral presentation was well received gave me the encouragement to write a full paper for publication. Through the questions from the audience, I gathered useful comments that will guide development of my manuscript, which I plan to submit for peer review later this year.
Oral Presentation: Depression Symptoms among Patients with Cancer, Cardiovascular, Chronic Respiratory Disease, or Diabetes in Outpatient Hospital Settings: A two-country study.
Now, I Feel Equipped to Embark on Research Studies
Lalchhanhima Ralte with Dr. Victorina Ludovick, who works for the Ministry of Health in Tanzania.
Lalchhanhima Ralte, India
Scientific, evidence-based palliative care practice and research needs to be strengthened in India. We are still at a stage where there is a need for advocacy within the government and the community. We are still at level of awareness, sadly, even amongst the majority of the medical fraternity.
I have always wanted to learn more about palliative care research. Attending the EAPC Congress opened my eyes to what kinds of research are being done in Europe, research methodology used, and most importantly, the impact of such studies and how they are translated into daily palliative care practices. The conference equipped me with the basics as well as the latest in palliative care research.
With my medical and public health background, I realized that there are certain studies I can start, studies that would be relevant to my local context. In the long run, this could benefit patients in India — especially those at the end of life.
On Top of the World at EAPC Congress in Bern
At the EAPC World Congress, Vilma Tripodoro from Argentina presented her poster titled, ‘Developing an International Measure for Quality of Care for the Dying: The International Care of the Dying Evaluation (i-CODE) project.’
Note: Abstracts from the 10th EAPC World Congress can be accessed here.
Core Needs & Challenges in the Philippines
Yun Hsing Lin-Go, Philippines
In the Philippines, the main needs and challenges are: stigma, access to medicines, and insurance issues. The stigma of hospice and palliative care is strong among other medical professionals; this hampers collaborative management of patient care. There is limited access to pain medications (e.g., morphine, fentanyl, oxycodone) in provinces and towns outside of Manila. Insurance providers, including PhilHealth, lack coverage for hospice and palliative care, which hinders accessibility to people in need.
I am a part-time, new faculty member of the University of Santo Tomas College of Medicine and Surgery, Manila, Philippines. At the 12th Asia Pacific Hospice Conference in 2017, I learned that is it important to educate medical students early on about hospice and palliative care, including international perspectives, as they are the future physicians. Education should include knowledge about the importance of managing a patient holistically, and the application of hospice and palliative care in their practice.
To find out more about IAHPC’s Program Support Grants, and our Traveling Scholarships and Traveling Fellowships, please visit our website. Through these programs we support projects and individuals around the world, especially in developing countries in Africa, Eastern Europe, Asia, and Latin America.
You can contribute to this program and help palliative care workers attend and participate in congresses and courses by donating to the Traveling Scholarships Campaign in the Global Giving website.