Do you see my pain? Aspects of pain assessment in hospitalized preverbal children

Sammanfattning: Background and aim: Pain in hospitalized preverbal children is underassessed and undermanaged. According to the Social Communication Model of Pain, pain is both a personal experience and a social construction, influenced not only by the child in pain, but by the observer and the context. Nurses’ pain assessment is biased towards underestimation. The use of structured pain scales is strongly advocated, but pain scales have been difficult to implement into clinical practice. To improve clinical pain assessment and reduce unnecessary pain for hospitalized preverbal children, a better understanding of aspects concerning these scales is needed, and nurses’ views regarding clinical pain assessment and their understanding and practical use of structured pain scales need to be further explored. The overall aim of this thesis was to contribute to knowledge regarding how to reduce unnecessary pain and suffering in hospitalized preverbal children by exploring aspects that influence nurses’ assessment of pain in the clinical setting. Material and Methods: This PhD thesis consists of four different studies using both qualitative and quantitative methods. In study I the COMFORT behavioral scale was translated into Norwegian using the forward-back-translation method and culturally adapted in 12 cognitive interviews with clinicians who would later be using the scale in clinical practice. The translated scale’s responsiveness to change and inter-rater reliability were tested in study II, based on repeated measurements from 45 preverbal children before and after minor outpatient surgery. Study III was a systematic review appraising the evidence underlying the recommendations presented in 14 systematic reviews on the measurement properties of observational pain scales. Study IV was a semi-structured interview study with 22 nurses in Norway and Canada and examined their pain assessment practices based on selfselected clinical examples. Results: Cognitive interviews identified several problems with the content validity of the Norwegian and original versions of the COMFORT behavioral scale. The responsiveness of the translated version was supported for assessment of sedation, but not for assessment of pain/distress. Scale recommendations given in systematic reviews addressing the measurement properties of observational pain scales had low evidence value and should be interpreted with caution. Observational pain scales were infrequently used in clinical practice and pain scores were not considered pain –specific. Instead; nurses expressed strong preferences for pain assessment based on clinical judgment and individually tailored to the child and the situation. When assessing pain, nurses combined experience-based and childspecific knowledge with one or more specific strategies to interpret observations of and information from the child. Described strategies included identifying a probable cause for pain, eliminating other sources of distress, evaluating behavioral change and/or effect of interventions on behavior, using a personal and contextual approach, and using behavioral pain scores. Conclusions: A preverbal child’s pain will probably be better seen, evaluated and managed if nurses apply a systematic and comprehensive assessment approach that integrates clinical judgement and structured pain scales.