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

Carter, Bernie; Arnott, Janine; Simons, Joan and Bray, Lucy (2017). Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers’ Perspectives. Pain Research and Management, 2017, article no. 2514920.

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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 recognize and act on the mothers’ concerns.

Item Type: Journal Item
Copyright Holders: 2017 The Authors
ISSN: 1918-1523
Project Funding Details:
Funded Project NameProject IDFunding Body
How do parents and healthcare practitioners develop and acquire knowledge and skills to assess and manage pain in children who have complex needs?144369WellChild
Academic Unit/School: Faculty of Wellbeing, Education and Language Studies (WELS) > Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies (WELS)
Research Group: Health and Wellbeing PRA (Priority Research Area)
Item ID: 49122
Depositing User: Joan Simons
Date Deposited: 10 Apr 2017 15:15
Last Modified: 17 Aug 2017 10:57
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