Living with pain: the experience of children and adolescents in palliative care

Abstract

El estudio tuvo como objetivo conocer la experiencia de niños y adolescentes en cuidados paliativos en el manejo diario del dolor. La investigación cualitativa fue realizada con entrevistas semi-estructuradas con seis niños entre siete y 17 años. La teoría del Desarrollo cognitivo de Piaget fue utilizada como Marco teórico y la Historia Oral como Referencial Metodológico. Cuatro temas fueron encontrados: describiendo el dolor; buscando una vida más próxima de la normalidad, a pesar del dolor y la enfermedad; utilizando varias alternativas para el control del dolor y viviendo la autoimagen perjudicada. A pesar del dolor ser un agente limitante en la vida de los niños y adolescentes, verificamos que enfrentaban el dolor diariamente y, que así mismo, tenían vida además del dolor y la enfermedad. Adicionamos, aun, la importancia de los enfermeros comprender que el eficaz manejo del dolor es esencial para una vida mas próxima de la normalidad, reduciendo su sufrimiento. DESCRIPTORES ABSTRACTA qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget's theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses' understanding that effective management of pain in children is essential for a normal life and less suffering.

Pain from the life cycle perspective: Evaluation and Measurement through psychophysical methods of category estimation and magnitude estimation

“…A qualitative study pointed out that children in the pre-operating stage of development described their pain emphasizing sensitive and evaluative aspects, which may indicate the characteristic of this phase in which the children have premature symbolic representation 3 .…”

“…Studying the pain of children/adolescents studies show that from the age of 4, children are capable of describing their pain through sensitive descriptors in the same way as it is described by older children or adults 3 , 15 .…”

“…The classical theory of Piaget may support studies about human pain 3 - 4 , since the author studies the human being from birth to adulthood, dividing the cognitive development in sensorimotor, pre-operational, solid operational and formal operational as well linking cognition and affectivity 5 . …”

Children’s description of pain through drawings and dialogs: A concept analysis

“…Pain characteristics-from the perspective of children Borghi et al (2014) Perquin et al (2003 1. "It hurts when the bandage is removed, it is a pain that hurts, it is a pain that pulls, it makes me cry and it is tiring.…”

“…In 1971, children's subjective pain perceptions were studied for the first time, and the results revealed that children could describe the nature of their pain verbally or through drawings (Schultz, ). Recent clinical research studies have made major contributions to expand this body of knowledge of pain in children, clarifying how children cope with acute and chronic pain ( Meldrum, Tsao, & Zeltzer, ; Borghi, et al, ; Pope, Tallon, McConigley, & Wilson, ; Smith, et al, ), cognitive and emotional aspects of pain (Kortesluoma, Nikkonen, & Serlo, ; Kortesluoma, Punamäki, & Nikkonen, ), describing pain experiences with drawings (Jongudomkarn, Aungsupakorn, & Camfield, ; Unruh, McGrath, Cunningham, & Humphreys, ) and children's perceptions of pain (Chaves, et al, ). Literature keeps growing in this subject area covering different aspects of pain in children (Kortesluoma & Nikkonen, ; Meldrum, et al, ; Neuman, ; Pölkki, Pietilä, & Vehviläinen‐Julkunen, ; Pölkki, Rissanen, & Pietilä, ).…”