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Dealing with uncertainty: parental assessment of pain in their children with profound special needs
Bernie Carter1, Elizabeth McArthur, Mary Cunliffe
1Department of Nursing, University of Central Lancashire, Preston, UK. bcarter@uclan.ac.uk
Insights
Parents of children with profound special needs develop unique skills to assess and manage their child's pain, often facing uncertainty and isolation. Their intimate knowledge is crucial for effective pain management strategies.
Area of Science:
- Pediatric Pain Management
- Special Needs Care
- Parental Expertise
Background:
- Children with profound special needs face significant challenges in expressing pain due to their underlying conditions.
- Current pain assessment frameworks are inadequate for this vulnerable population, leading to suboptimal care.
- Effective pain management is critical for the well-being of children with profound special needs.
Purpose of the Study:
- To investigate how parents of children with profound special needs perceive and manage their children's pain.
- To understand the strategies parents employ in assessing and alleviating pain in non-verbal or minimally verbal children.
- To identify the challenges and support needs of parents caring for children with profound special needs experiencing pain.
Main Methods:
- Qualitative case study design.
- Guided interviews with 15 parents/carers of 12 children (aged 5-16 years) with profound special needs.
- Exploration of parental experiences in pain assessment and management.
Main Results:
- Parents reported children learning to live with significant chronic and acute pain.
- Pain assessment was characterized by uncertainty and complexity, relying on parental expertise.
- Parents utilized individualized strategies based on intimate knowledge of their child's non-pain behaviors.
- Children expressed pain through limited behaviors, which parents learned to interpret.
Conclusions:
- Parents develop specialized skills over years to assess and manage their child's pain.
- Despite communication challenges, children effectively express pain through observable behaviors.
- Parents often feel isolated and underutilized by healthcare professionals in pain management.
- There is a need to better support and integrate parental knowledge into pain management plans for children with profound special needs.
Background:
Despite advances in the assessment and management of children's pain, children with profound special needs are especially vulnerable to poor pain management. Their underpinning condition often severely compromises their ability to express pain through the usual verbal and behavioural routes. The lack of any appropriate framework for assessment results in a suboptimum and inaccurate approach to an important aspect of their care.
Purpose:
The purpose of the study was to explore the ways in which parents of children with profound special needs assess and manage their children's pain.
Methods:
Qualitative case study design underpinned the study using guided interviews with the 15 parents/carers (of 12 children aged 5-16 years with profound special needs).
Ethical Approval:
Ethics Committee approval was gained.
Findings:
A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions.
Conclusions:
Parents felt that their child had learned to live with significant levels of chronic and acute pain. Assessment of pain was an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years. Parents used different strategies for both the assessment and management of pain based on an intimate knowledge of their child's usual nonpain state. Even with a limited repertoire of behaviours available to them, children were able to express pain. Parents often felt isolated in relation to pain management and under-used as a resource by health professionals.