May 15, 2013
“Pain is one of the most misunderstood, underdiagnosed, undertreated and untreated medical problems, particularly in children.”1
The video, entitled Julius, opens with various awareness statements about the phenomenon of pain, myths in the field of pain management for children, and the barriers that prevent its greater understanding.2
Dr. Angie Sievert-Fernandez, Kythe Inc.’s resident Child Life Program Manager, recently attended the First Interdisciplinary Academic Conference on the Holistic Support of Children in Healthcare last April 13, 2013, jointly hosted by the Organization for Pediatric Support in South Africa and Netcare. The conference was held in Johannesburg, South Africa, and Dr. Angie stood as a representative for the Philippines, given her background in psychology, wellness and pain management.
Dr. Angie’s contribution to the conference was a paper entitled “Developmental Characteristics in Chronically Ill Filipino Children’s Concept of Pain: An Exploratory Study”. The paper emphasized the need to recognize, effectively assess and manage the pain of children through developmentally appropriate practices and methods. This is a strong advocacy of Dr. Angie and Kythe as an organization through the implementation of the Child Life Program.
Both the paper and the Julius video were lauded by other attendees of the conference from the medical and allied medical health professionals, all pledging themselves to the cause of caring for children and acknowledging the great value of the paper to the national and international community.
“When making a decision on treatment in child healthcare,” a screen in the video states, “The tendency to listen to children is often the last resort.”3
Dr. Angie then begins to listen, conducting an interview with Julius spanning the duration of the video. Julius describes the experiences of his pain during and after treatment with great honesty.
Sometimes, he says, he does not want to say that he feels pain or how much of it bothers him – “I just cry sometimes,” he says.
Sometimes, the pain is very present and at the same time continued and sustained during and after treatment. “I scream,” he says, speaking about stomach pain. “I say it is painful… [the stomach pain] feels like it is burning inside.”
“If I ask you to complete the sentence, ‘pain is….’, what will you say?” Dr. Angie asks.
“Pain is painful, 100%,” Julius says very frankly.
“But also, what helps you feel thankful that it is no longer painful?”
“[I feel that way] when it is all over,” says Julius.
Most importantly, Dr. Angie delves into what may relieve the pain, to which Julius answers that he looks forward to Kythe activities. “I enjoy,” he says, “and it’s not like I am in pain anymore. [The activities help] because they are fun.”
Dr. Angie’s paper and presentation, in developing greater understanding and awareness on the experience and coping of pain, are great testaments to the resilience of these children at such early ages, and likewise, their courage in facing the realities of their condition with all their strength.
From the perspective of the Child Life Program, the healing, well-being and growth of the pediatric patients stands at the forefront of Kythe’s efforts.
The presentation stands in loving memory of Julius, who passed away in 2011 at the age of 14.
1 Jacob & Puntillo, 2000; Ga & Bargault, 2005; Schetcher, Allen & Hanson, 1986.
2 Finley, Forgeron, & Arnaout, 2007; McCarthy, Chamman, Wilimas, Alaloui, & Harif, 2004.
3 Kortesluoma, et al, 2008.