Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives.

Bernie Carter,Joan Simons,Lucy Bray,Janine Arnott

doi:10.1155/2017/2514920

Bernie Carter, Joan Simons + Show 2 more

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https://doi.org/10.1155/2017/2514920

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Abstract

Children with profound cognitive impairment (PCI) are a heterogenous group who often experience frequent and persistent pain. Those people closest to the child are key to assessing their pain. This mixed method study aimed to explore how parents acquire knowledge and skills in assessing and managing their child's pain. Eight mothers completed a weekly pain diary and were interviewed at weeks 1 and 8. Qualitative data were analysed using thematic analysis and the quantitative data using descriptive statistics. Mothers talked of learning through a system of trial and error (“learning to get on with it”); this was accomplished through “learning to know without a rule book or guide”; “learning to be a convincing advocate”; and “learning to endure and to get things right.” Experiential and reflective learning was evident in the way the mothers developed a “sense of knowing” their child's pain. They drew on embodied knowledge of how their child usually expressed and responded to pain to help make pain-related decisions. Health professionals need to support mothers/parents to develop their knowledge and skills and to gain confidence in pain assessment and they should recognise and act on the mothers' concerns.

Highlights

Children with profound cognitive impairment (PCI) can experience pain from a wide range of different sources
This paper reports on parent-generated data from a study that addressed health professionals’ experiences and perceptions of assessing and managing the pain of children with PCI
We aimed to explore the frequency, regularity, and intensity of parent-reported pain episodes experienced by children with PCI and their parents’ knowledge and skills in assessing their child’s pain

Summary

Introduction

Children with profound cognitive impairment (PCI) can experience pain from a wide range of different sources Some of these pains are the commonplace pains of childhood (e.g., toothache) but some are associated with their underlying disorder (e.g., muscle spasms, gastrooesophageal reflux) or with the child’s impairments and the prescribed treatments and interventions (e.g., venepuncture, pain related to use of splints) [1, 2]. The heterogeneity of response to and expression of pain in this diverse group of children may be related to the child’s comorbidities and motor development disabilities [3] and the effect these may have on their physiological and behavioural responses (Breau et al, 2001). The combination of these factors can result in a “perfect storm” whereby children with PCI experience frequent, persistent, significant, and sometimes daily pain [5,6,7,8] and are at high risk of their pain being underassessed and undertreated [4, 9, 10]

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