Pediatric cancer is curable when diagnosed early and treated appropriately; the survival rate for all childhood cancers surpasses 80 percent in most high-income countries. Yet in mid- to low-income countries, basic elements of pediatric oncology care are often lacking and outcomes are grim, with survival rates of 40 percent or less.
“Twinning” is a model where pediatric oncology programs in high-income countries partner with cancer centers in low-income areas to share expertise, resources and technology. One such example is the partnership Dana-Farber/Boston Children’s Cancer and Blood Disorders Center formed in 2011 with the Unidad Hemato-Oncologia Pediatrica (UHOP), the pediatric oncology program at the Hospital Infantil Dr. Arturo Grullon in Santiago, Dominican Republic.
Pediatric oncology nurses require specialized education and training, often not available in resource-limited countries. At UHOP, the nursing team is strongly committed to improving patient care and fostering professional nursing practice. The UHOP and DF/BCH team has made progress in key areas, such as chemotherapy safety, checklist implementation and infection reduction.
Despite these improvements, the team at UHOP struggle with high patient mortality, compounded by the fact that most UHOP clinicians — especially nurses — don’t receive formal training in pain management and palliative care.
Last summer, clinical leaders from Dana-Farber/Boston Children’s and UHOP collaborated to host the first pediatric pain management and palliative care conference ever held in the Dominican Republic. The two-day conference (funded by a Boston Children’s Global Health Program grant and donations from a local charity in Santiago) offered lectures and interactive sessions, including case discussions, role-playing and team building activities. Over 80 nurses, physicians and psychologists from Santiago and surrounding areas attended to learn palliative care skills, such as “Managing Distressing Symptoms at End of Life” to “Communication Strategies to Promote Teamwork and Patient Safety.”
The first step in developing the agenda was a focus group with UHOP’s nurses. We simply asked, “What concerns you most about caring for dying children?” The nurses openly shared their experiences, from witnessing children suffer from unmanaged symptoms, to the dilemma they face when an adolescent asks “Am I going to die?” and parents choose to withhold information. The nurses’ honest and direct answers guided the conference content and format.
The response to the conference was overwhelmingly positive. Evaluations revealed that providing a forum to discuss the challenges of pediatric palliative care and teach evidence based strategies to minimize suffering motivated the attendees attended to do better for their patients and families. Comments such as “This conference reminded me that I am not alone in my work” and “I appreciated learning strategies taught by experts in palliative care” validated the twinning team’s hard work. Virtually all attendees said they wanted to receive this type of education on a regular basis.
The conference proved that an effective palliative care education program can be built through a combination of professional partnerships and local expertise. The highlight of the event was the standing ovation the audience gave the local team at the close of the conference. It was a beautiful sight to witness.
Lisa Morrissey, MPH, MSN, RN, is the global nursing fellowship director at Boston Children’s Hospital and the nurse manager for hematology/oncology/research on Dana-Farber/Boston Children’s Cancer and Blood Disorders Center‘s inpatient unit. She has participated in international programs to pediatric oncology nursing education in Colombia, Central America and Myanmar.