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

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.

Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis

“…However, Reinders (2010) was describing the tacit knowledge of professional caregivers. Like others (Hostyn & Maes, 2009; Watson et al., 2017; Carter, Simons, Bray, & Arnott, 2016; Donovan, 2002), he classified this type of knowledge based on the emotional involvement and closeness that develops between people over years of interaction, rather than on a supposed unique bond between parent and child. Thus, the parents’ knowledge might not be readily transferable, but is acquirable by others than the parents (Carter et al., 2016; Donovan, 2002).…”

“…In addition, since it seems likely that professional caregivers can acquire the same type of knowledge as parents through emotional involvement and closeness, fuelled by interaction over time (Watson et al., 2017; Carter et al., 2016; Donovan, 2002; Reinders, 2010), professional caregivers should have a certain discretionary space to plan their own scheduling. In other words, the special and close relationship between professional caregivers and their clients with PIMD needs time and space to evolve.…”

Blood monoamines as potential biomarkers for conditioned pain modulation efficacy: An exploratory study in paediatrics

“…Moreover, sampling ME in the clinical setting may provide the clinician a picture of an individuals’ pain modulation efficacy. Besides its potential use as a proxy for CPM efficacy in the general population with chronic pain, its usage would be particularly important for children with cognitive impairment, for whose CPM paradigm cannot be used (Birnie, Caes, Wilson, Williams, & Chambers, ; Carter, Simons, Bray, & Arnott, ; Passmore & Cunningham, ). Thus, ME could possibly be used as a CPM biomarker.…”

‘Drawing a line in the sand’: Physician diagnostic uncertainty in paediatric chronic pain

“…Clinicians who manage adult chronic pain have reported feeling unsuccessful as physicians and in their ability to effectively manage their patients’ chronic pain problem (Matthias et al., 2010). In the context of paediatric chronic pain, uncertainty has been studied among clinicians in terms of assessing pain in children with profound cognitive impairment, with clinicians managing uncertainty through seeking mentorship and discussion with colleagues (Carter et al., 2016). The implications of uncertainty among clinicians are enormous at both individual (e.g.…”