Navigating Uncertainty: Health Professionals' Knowledge, Skill, and Confidence in Assessing and Managing Pain in Children with Profound Cognitive Impairment.

Bernie Carter,Joan Simons,Lucy Bray,Janine Arnott

doi:10.1155/2016/8617182

Abstract

There is limited evidence to underpin the assessment and management of pain in children with profound cognitive impairment and these children are vulnerable to poor pain assessment and management. Health professionals working with children with profound cognitive impairment from a single paediatric tertiary referral centre in England were interviewed to explore how they develop and acquire knowledge and skills to assess and manage pain in children with cognitive impairment. The interviews were transcribed and subjected to thematic analysis. Nineteen health professionals representing different professional groups and different levels of experience participated in the study. A metatheme “navigating uncertainty; deficits in knowledge and skills” and two core themes “framing as different and teasing things out” and “the settling and unsettling presence of parents” were identified. Uncertainty about aspects of assessing and managing the pain of children with cognitive impairment tended to erode professional confidence and many discussed deficits in their skill and knowledge set. Uncertainty was managed through engaging with other health professionals and the child's parents. Most health professionals stated they would welcome more education and training although many felt that this input should be clinical and not classroom oriented.

Highlights

There are varied and interchangeable terms used within the literature to describe the diverse group of children who are so severely cognitively impaired that they are unable to self-report their pain as they lack the capacity to either verbally communicate or purposefully communicate their pain through other systems
Nineteen health professionals participated in the study
The five allied health professionals worked as an occupational therapist (n = 1), psychologist (n = 1), physiotherapist (n = 1), play specialist (n = 1), and movement therapist (n = 1)

Summary

Introduction

There are varied and interchangeable terms used within the literature to describe the diverse group of children who are so severely cognitively impaired that they are unable to self-report their pain as they lack the capacity to either verbally communicate or purposefully communicate their pain through other systems These children are described as having special needs, intellectual disability, neurological disability, developmental disability, and cognitive impairment; the descriptors are often qualified by terms such as severe and profound to reflect the depth of disability or impairment [1]. Studies are often small scale, underpowered, and not adequately representative of the children’s diverse diagnoses, Pain Research and Management comorbidities, capacities, and treatments These limitations within the evidence base need to be considered in relation to the findings of the small number of relevant studies that are reported

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