“You have cancer.”
No one ever wants to hear to those words. Imagine when the cancer-stricken patient is young, a child or a teenager who should still be looking forward to many experiences life has to offer.
Even more devastating is that “in the Philippines, two-thirds of pediatric patients with cancer are diagnosed at advanced stages.” This is the grim reality revealed by Prof. Loyda Cajucom of the UP Open University (UPOU) Faculty of Management and Development Studies. She is a registered nurse, and a graduate and a former faculty member of UP Manila who has firsthand experience of dealing with pediatric cancer patients.
This, along with the lack of developed palliative and supportive care programs in the country and UPOU’s leadership in open and distance e-learning, led her to spearhead “Aruga sa Batang may Cancer (ABC).” This online resource, funded by a grant from the Department of Science and Technology-Philippine Council for Health Research and Development, is dedicated to, as the name indicates, caring for children with cancer.
ABC is the first of its kind in the country.
Dr. Rumalie Corvera, founder and executive director of Ruth Foundation, a palliative care service provider and an ABC partner, explains that palliative care is a form of assistance given to patients of life-threatening or life-limiting illnesses and their families and loved ones.
Palliative care is not limited to alleviating the physical pain of the patient, as some perceive it to be. It is a holistic approach which includes ensuring the psychosocial well-being of the patients and their loved ones as well. Sometimes, Cajucom says, the mental and emotional toll of a cancer diagnosis weighs far more heavily than the physical. “I saw it many times when I was at the Philippine General Hospital.”
Corvera says of Ruth Foundation’s experience: “It’s often the parents who have a harder time accepting their child’s illness. There are times when it’s the patient who even comforts his or her parents and tells them to be strong.”
Palliative care, which is more prevalent in Western countries, cannot simply be applied as is in the Philippines because of cultural beliefs, traditions, and attitudes. In a country where practice of and knowledge on palliative care leaves much to be desired, Cajucom and her team had to conduct assessments to get a clearer picture of what needs to be done and how. They also had the support of other partners like Kythe Foundation, Inc. and the John Wayne Cancer Institute.
Hospitals in strategic locations across the country eagerly participated in the activities. These are: the Philippine Children’s Medical Center in Metro Manila; Bicol Regional Training and Teaching Hospital in Albay; Cebu Doctors’ University Hospital and Vicente Sotto Memorial Medical Center in Cebu; and, Southern Philippines Medical Center in Davao.
The result of their work is the ABC website, https://arugaproject.com/, which was formally launched on March 1 as part of UPOU’s 24th anniversary celebration.
The site has a learning management system for primary caregivers available in three languages: Bisaya, English, and Tagalog. This section contains information materials, text, images, and videos, that can be accessed by anyone visiting the site. The text and images may be downloaded in PDF format for offline reading.
In this video, Dr. Angie Sievert-Fernandez, a Kythe Foundation, Inc. child life specialist, discusses how parents can explain cancer to their child once diagnosed. This is one of many resources posted on the ABC website.
Two other components provide online training programs for health care professionals. One is for doctors and the other is for nurses and allied health professionals. Access to these sections is limited to the intended users.
Its cancer registry and telemedicine components are still being completed. The cancer registry will be a database of pediatric cancer information and statistics to guide policymaking and implementation by appropriate government agencies. Relevant statistical data for public information may also be posted in the section.
The telemedicine function of the site will help facilitate consultations between physicians of pediatric cancer patients and specialists, which would otherwise be nearly impossible because of geographical distance.
Beyond pediatric cancer
Cajucom aims for this pioneering effort to be later duplicated to address other diseases prevalent in or of interest to the country.
A web-based platform is a cost-effective and accessible way for patients, caregivers, professionals, and even state agencies to get accurate information on and relevant training in the provision of necessary health care services. This is one way to bridge the gap between patients and health care providers, who, because of limited resources on one end, may not meet at all.
Data that will be collected through sites like https://arugaproject.com/ will also be the basis of analysis for trends and patterns that will inform and guide state policy and action in health care.
ABC is starting off the country’s movement towards harnessing information and web technologies in finding innovative solutions to problems in the provision of crucial health care services to Filipinos. Here’s hoping more will follow suit.