2012; Volume 13, No 9, September
Reports
Three IAHPC Traveling Scholars’ Reports
From Tanzania
A report by Alick Austine Kayange (Tanzania)
On 5th June 2012, I went to Trondheim Norway to attend the 7th World Research Congress of the European Association for Palliative Care (EAPC).
First of all I would like to acknowledge the support I received from IAHPC. This scholarship was very useful and timely for the advancement of my career.
The need for home based palliative care has greatly increased in Tanzania due to the HIV/AIDS epidemic. Pastoral Activities and Services for people with AIDS Dar es Salaam Archdiocese (PASADA) is a center that provides care to people living with HIV/AIDS and plays a pivotal role in scaling up the number of health care workers that are available with knowledge in palliative care through their mentoring and training programs. The need is more pronounced in patients with HIV/AIDS because they have concomitant chronic diseases like cancer, hypertension and diabetes. The increasing number of children living with HIV/AIDS who have experienced the loss of a parent(s) is alarming for both PASADA and the country at large since it requires greater emphasis on palliative care. Many health care workers (doctors, nurses, etc.) in Tanzania have little background in palliative care and research because it was not included in the university curriculum.
This congress permitted me to network with international experts, obtain information, share, and acquire new skills that will benefit me, my organization and country.
This meeting also helped me to identify research areas which need to be addressed. These include: a need to train more people in pediatric palliative care, review the model for pain assessment, explore the relationship of pain and other distressing symptoms to the quality and quantity of life and the level of independence. We need to look at developing interventions that improve communication within in families and with care providers and evaluate the effectiveness of the various models of care.
The meeting provided me with information on pediatric palliative care, the role of home palliative care, spiritual care, pain assessment and sedation. I was also able to share my experiences at PASADA during poster presentations where I had access to speak face-to-face with colleagues and presenters. The new knowledge I acquired will strengthen our research and publication unit at PASADA and encourage all palliative care workers to place greater emphasis on documentation.
Also during the congress, I noted that it is still controversial as to whether euthanasia should be legalized or not. This is something that we need to address in our country.
Once again, I would like to thank IAHPC for offering me this traveling scholarship.
Alick Austine Kayange (MD, PGC Int’l Community Health)
Head, Pediatric section, PASADA
Dar es salaam, Tanzania.
From the USA
A report by Aynur Aktas (USA)
I attended the 7th World Research Congress of EAPC in June, 2012, Trondheim, Norway. It was a very important event in my career. I was able to present my research abstracts in poster and free communication sessions. I had the opportunity to meet clinicians and researchers from different cultures and countries. We had fruitful conversations about the most recent developments in palliative care services in various regions. It was also an opportunity to enhance my network with others and energize me both personally and professionally as I advance my career. I was fortunate to be able to interact with key people from the Norwegian University of Science and Technology, Trondheim, Norway and from King’s College, London, United Kingdom. Their information about their master’s and doctorate programs in palliative medicine was invaluable.
The plenary sessions were of great importance to me as well as the themed sessions in cancer-cachexia. I learned a lot from the experts in palliative medicine research including practical approaches in research methodology and sustainable research collaborations.
Perhaps the most striking message was given by Dr. Eduardo Bruera during the opening ceremony when he spoke about the development of palliative care research over the last 25 years. I really appreciated his message that you can produce innovative research without great funding as long as you build a good working relationship with your mentor. This certainly goes without saying since my mentor has contributed immensely to development of my research career.
What I learned in Trondheim will be shared at every opportunity with my colleagues in both our in-service and educational programs. The knowledge I gained will also help me further evaluate and update our research procedures and protocols.
I wish to express my sincere thanks to the IAHPC for this wonderful opportunity. I strongly believe that this scholarship has provided insights and learning experiences that I could not have had in any other venue.
Kindest regards,
Aynur Aktas, MD
Research Fellow
The Harry R. Horvitz Center for Palliative Medicine
Cleveland Clinic, Taussig Cancer Institute
From Sri Lanka
A report by Lalitha Meegoda (Sri Lanka)
I wish to thank IAHPC for providing me with a scholarship to train in palliative nursing while in Pallium India. Currently I am reading for my PhD degree in Sri Lanka. The title of my dissertation is “Development of an educational intervention to enhance the nurses’ ability to provide palliative care to adult cancer patients”.
Basic nursing and post basic nursing curricula in Sri Lanka do not have adequate time allocated to palliative care nursing nor are their opportunities for continuing education. Because of this, there are no palliative care nurses in Sri Lanka. The nurses that work in oncology learn from senior nurses. Very recently a few nurses were able to attend a one week course on palliative nursing offered in the United Kingdom.
At the end of this year I will conduct a palliative care training course in Sri Lanka for nurses working in oncology units. The experience I received in Pallium India will be of great help as I prepare the module for nurse training. With my newly acquired knowledge, I now have the confidence to proceed while still having access to help from those in Pallium India during this new adventure.
I believe all nurses and doctors should have palliative care training in order for them to be able provide comprehensive care to their patients. Thank you for offering this scholarship grant to me for this excellent palliative care training in India.
Lalitha Meegoda
Nursing lecturer
University of Sri Jayewardenepura
Sri Lanka.
IAHPC Traveling Fellow's Report
Teaching Pediatric Palliative Care in India. February 2012
A report from Dr Tamara Vesel and Jody Chrastek
India is a nation where children are deeply cherished and loved. Unlike other nations where children are asked to “be seen and not heard,” India celebrates her children because they are seen and heard! Of the estimated 1.2 billion people (2007), about one third or 400 million are children below the age of 15. Using the suggested statistic of 12 children in 10,000 needing palliative care, this means that there are over 400,000 children in India who need palliative care. The opportunity to teach pediatric palliative care in India has been the highlight of our teaching careers.
With the support of IAHPC we were able to enter a world of generosity, kindness, thoughtfulness and eagerness to learn, but also a world of extremes, advanced illness, pain, poverty and significant health care needs.
We were invited by Dr Lindagowda and Dr Gayatri Palat to teach at their respective institutions, Kidwai Cancer Center in Bangalore and MNJ Institute of Oncology in Hyderabad. In addition we were invited while in India to make a presentation at the 19th International Indian Palliative Care Congress, Kolkata.
Bangalore
Pediatric palliative care in India is very diverse as is India itself. Arriving to Bangalore Kidwai Cancer Center we entered the world of heat, cancer and hard work. Our efforts to teach there were layered with challenges of teaching various types of healthcare professionals while learning about the medical culture we were faced with.
We spent time in various cancer clinics and outpatient wards teaching nurses and giving small group presentation and grand rounds. The audiences were captive and very engaged.
The highlights of our days were moments during which we elicited smiles on the faces of children and their parent’s when we blew bubbles or engaged them in drawing and storytelling. This was a worthwhile diversion for them during recovery from procedures or waiting in line to be seen in the clinic. The palliative care program focuses intently on the treatment of the pain due to cancer and we were impressed by all the clinicians involved.
Hyderabad
Next, we took an overnight train to Hyderabad where the heat was more intense, food spicier and our teaching assignment more intense. In conjunction with MNJ Institute of Oncology and Regional Cancer Center palliative care program we taught a 2 day interdisciplinary pediatric palliative care workshop for clinicians from various disciplines and from multiple states in India. The goal was to improve delivery of pediatric palliative care. The learners were engaged and curious and we were also learning from them while teaching at the same time. The enthusiasm of the professional learners, organizers and us was matched by the obvious needs of the children they serve. There was a high sense of urgency to support the advancement of their pediatric palliative care movement.
We also attended to the needs of nursing staff education and the newly developed fellowship in pediatric palliative care.
19th International Indian Palliative Care Congress, Kolkata, India
This congress was well attended and well organized. It was so encouraging to see pediatric palliative care growing as a subspecialty in India. As in the US, many programs are comfortable caring for adults who have palliative care needs, but they have not been able to extend their care to the pediatric population.
A call to provide children with the same level of comprehensive palliative care as adults was well received. One of the best moments of the conference was when a leading physician from North India said to “I never thought I could take children on the program, but now I see we must. There is no one else. We must collaborate with our pediatric colleagues and do this.” It was exciting to see the interest and support for pediatric palliative care and know that the Indian Association of Palliative Care plans to offer more pediatric educational opportunities at the next annual conference.
The International community must continue to support this growing movement to ensure that children also have the right to be pain free and have their symptoms managed effectively. We are hoping to continue educational exchanges and to develop on line learning opportunities to foster long term professional relationships. There is much work to be done, but also there is enthusiasm and energy to provide the same excellent palliative care for children as is provided for adults.
We made lasting professional relationships and friendships with many members of palliative care community in India. We are grateful for the generosity of IAHPC and the organizing committee of the19th International Indian Palliative Care Congress that made this all possible.
Jody Chrastek DNP
Palliative Care Coordinator
Children’s Hospitals and Clinics of Minnesota,
Minneapolis, MN USA
Tamara Vesel, MD
Director, Pediatric Palliative Fellowship
Dana Farber Cancer Institute and Children's Hospital
Harvard Medical School
Boston, MA, USA