ArticlePain research & management2017
Developing a Sense of Knowing and Acquiring the Skills to Manage Pain in Children with Profound Cognitive Impairments: Mothers' Perspectives.
Article in Pain research & management, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Detection and assessment of postoperative pain in children with cognitive impairment: A systematic literature review and meta-analysis.European journal of pain (London, England) · 2022Pooled it
- Pooled it
- Pain assessment in non-verbal children with neurocognitive impairment: a review on current tools, challenges, and clinical perspectives.Frontiers in pain research (Lausanne, Switzerland) · 2026Review
- Pain experience and perception in individuals with Snijders Blok-Campeau syndrome.Frontiers in pain research (Lausanne, Switzerland) · 2025Article
- Parents' tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative study.Journal of intellectual & developmental disability · 2024Article
- Timeline of diagnosed pain causes in children with severe neurological impairment.Frontiers in pediatrics · 2024Article
- A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments.The Cochrane database of systematic reviews · 2023Review
- Managing acute pain in children presenting to the emergency department without opioids.Journal of the American College of Emergency Physicians open · 2022Review
- Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.Paediatric & neonatal pain · 2022Article
- "Communicating Lily's Pain": A reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment.Paediatric & neonatal pain · 2022Article
- A Pragmatic Approach to Assessment of Chronic and Recurrent Pain in Children with Severe Neurologic Impairment.Children (Basel, Switzerland) · 2022Article
- Witnessing Quality of Life of Persons with Profound Intellectual and Multiple Disabilities. A practical-Philosophical Approach.Health care analysis : HCA : journal of health philosophy and policy · 2021Article
- Validity and Reliability of the Caregiving Difficulty Scale in Mothers of Children with Cerebral Palsy.International journal of environmental research and public health · 2021Article
- Pain and Communication in Children with Cerebral Palsy: Influence on Parents' Perception of Family Impact and Healthcare Satisfaction.Children (Basel, Switzerland) · 2021Article
- Parents' knowledge of their child with profound intellectual and multiple disabilities: An interpretative synthesis.Journal of applied research in intellectual disabilities : JARID · 2020Review
- Developing a Framework to Support the Delivery of Effective Pain Management for Children: An Exploratory Qualitative Study.Pain research & management · 2020Review
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.