Dealing with uncertainty: parental assessment of pain in their children with profound special needs.
TL;DR: A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions as well as an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years.
Abstract: 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.
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TL;DR: It is proposed that re-thinking of FCC is required in order to develop a more coherent programme of research into the application of FCC theory in children's healthcare.
Abstract: Background The terms family-centred care (FCC) and family-centred services (FCS) are used interchangeably across the continuum of children's healthcare to encompass concepts of: parental participation in children's healthcare; partnership and collaboration between the healthcare team and parents in decision-making; family-friendly environments that normalize as much as possible family functioning within the healthcare setting; and care of family members as well as of children. However, authors from different professional and policy perspectives have used different definitions and literatures when arguing the evidence for FCC and FCS.
Method A critical literature review and theoretical discussion exploring common concepts and issues forming the basis for a research agenda further strengthening of the evidence base for FCC. A systematic identification of constructs, concepts and empirical indicators is developed and applied to exemplars in pain and asthma that span the continuum of children's healthcare across acute and community settings.
Conclusions The extent to which the concepts are supported by research and applied in practice remains unclear. We propose that re-thinking of FCC is required in order to develop a more coherent programme of research into the application of FCC theory in children's healthcare.
183 citations
TL;DR: Assessment of the validity and reliability of the PPP in 140 children unable to communicate through speech or augmentative communication suggests that it is reliable and valid and has potential for use both clinically and in intervention research.
Abstract: The Paediatric Pain Profile (PPP) is a 20–item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11 months, SD 4 years 7 months; range 1 to 18 years), unable to communicate through speech or augmentative communication. Parents used the PPP to rate retrospectively their child's behaviour when‘at their best’and when in pain. To assess interrater reliability, two raters concurrently observed and individually rated each child's behaviour. To assess construct validity and responsiveness of the scale, behaviour of 41 children was rated before and for four hours after administration of an‘as required’analgesic. Behaviour of 30 children was rated before surgery and for five days after. Children had significantly higher scores when reported to have pain than‘at their best’and scores increased in line with global evaluations of pain. Internal consistency ranged from 0.75 to 0.89 (Cronbach's alpha) and interrater reliability from 0.74 to 0.89 (intraclass correlation). Sensitivity (1.00) and specificity (0.91) were optimized at a cut-off of 14/60. PPP score was significantly greater before administration of the analgesic than after (paired-sample t-tests, p < 0.001). Though there was no significant difference in mean pre- and postoperative scores, highest PPP score occurred in the first 24 hours after surgery in 14 (47%) children. Results suggest that the PPP is reliable and valid and has potential for use both clinically and in intervention research.
174 citations
TL;DR: There are important gaps in the knowledge base on access to health care for people with learning disabilities and while these need to be addressed, developing strategies to overcome identified barriers should be a priority, along with fuller evaluation of existing innovations.
Abstract: Objectives: People with learning disabilities are more prone to a wide range of additional physical and mental health problems than the general population. Our aim was to map the issues and review ...
149 citations
TL;DR: Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention, to address the inherent challenges of pain in this vulnerable group of children.
Abstract: Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.
125 citations
TL;DR: Preliminary data provide preliminary data that the INRS is a valid and reliable tool for assessing pain in nonverbal children with severe intellectual disability in an acute care setting and evidence of convergent validity.
Abstract: Clinical observations suggest that nonverbal children with severe intellectual disability exhibit pain in a wide variety yet uniquely individual ways. Here, we investigate the feasibility and describe the initial psychometrics properties of the Individualized Numeric Rating Scale (INRS), a personalized pain assessment tool for nonverbal children with intellectual disability based on the parent’s knowledge of the child. Parents of 50 nonverbal children with severe intellectual disability scheduled for surgery were able to complete the task of describing then rank ordering their child’s usual and pain indicators. The parent, bedside nurse and research assistant (RA) triad then simultaneously yet independently scored the patient’s post-operative pain using the INRS for a maximum of two sets of pre/post paired observations. A total of 170 triad assessments were completed before (n = 85) and after (n = 85) an intervention to manage the child’s pain. INRS inter-rater agreement between the parents and research nurse was high (ICC 0.82–0.87) across all ratings. Parent and bedside nurse agreement (ICC 0.65–0.74) and bedside nurse and research nurse agreement (ICC 0.74–0.80) also suggest good reliability. A moderate to strong correlation (0.63–0.73) between INRS ratings and NCCPC-PV total scores provides evidence of convergent validity. These results provide preliminary data that the INRS is a valid and reliable tool for assessing pain in nonverbal children with severe intellectual disability in an acute care setting.
108 citations
Cites background from "Dealing with uncertainty: parental ..."
...Several studies have demonstrated that parents of children with intellectual disabilities can describe their child’s pain indicators [6,7,10,13,18,20]....
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...Several studies of pain assessment in children with intellectual disability have found that parents can identify their child’s pain indicators and can provide reasonable estimates of pain [6,7,10,13,18,21]....
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...In addition, baseline physical abilities, including neuromuscular function and expressive behaviors have been found to be helpful in order to recognize a deviation from usual behavior [6,10]....
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...This is consistent with the literature that parents do know their child’s pain [6,7,10,13,18,21]....
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References
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01 Jan 1995TL;DR: In this article, an intensive study of case study research methods is presented, focusing on the Unique Case Research Questions and the Nature of Qualitative Research Data Gathering Analysis and Interpretation Case Researcher Roles Triangulation.
Abstract: Introduction An Intensive Study of Case Study Research Methods The Unique Case Research Questions The Nature of Qualitative Research Data Gathering Analysis and Interpretation Case Researcher Roles Triangulation Writing the Report Reflections Harper School
22,208 citations
"Dealing with uncertainty: parental ..." refers methods in this paper
...Page 6 Methods A case study design was used in which the individual families/children were identified as the case units (Stake 1995)....
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TL;DR: The authors argue that the constructivist position fails to account for experiential know-how, in particular arguing that constructivist positions do not account for the knowledge of the subject and the environment.
Abstract: This article starts with a critique of Guba and Lincoln's outline of competing paradigms for research, in particular arguing that the constructivist position fails to account for experiential knowi...
1,210 citations
TL;DR: The CAS has fulfilled the first two criteria for a pain measure (psychophysical properties and discriminant validity), it is ethical to proceed with the formal definitive test for construct validity, in which children from various clinical populations use the CAS scale to assess their own pain.
Abstract: A new instrument was designed to provide a practical clinical measure for assessing children's pain intensity and pain affect. The pocket size measure includes a Coloured Analogue Scale (CAS) to assess intensity and a facial affective scale to assess the aversive component of pain. Both scales have numerical ratings on the back, so that the person administering it can quickly note the numbers that represent a child's pain. This study was conducted to determine the validity of the new instrument by evaluating the psychophysical properties of the intensity scale and by evaluating the discriminant validity of the intensity and affective scales. Since visual analogue scales (VAS) are valid and reliable measures for assessing children's pain, children's ability to use the new analog scale was compared with their performance on a VAS. Children's ability to rate pain affect using an affective scale, in which the 9 faces on a Facial Affective Scale (FAS) are presented in an ordered sequence from least to most distressed, was compared to their performance on the original FAS, in which the same faces were presented in a random order. Using a parallel groups design, 104 children (5-16 years; 60 female, 44 male; 51 healthy and 53 with recurrent headaches) were randomized into two groups: CAS or VAS. Children used the assigned scale to complete a calibration task, in which they rated the sizes of 7 circles varying in area (491, 804, 1385, 2923, 3848, 5675 and 7854 mm2). The psychophysical function relating perceived circle size to actual physical size was determined for the CAS and VAS. Children's CAS and VAS responses on the calibration task yielded similar mathematical relationships: psi cas = 0.035I0.87, psi vas = 0.027I0.89, where psi = perceived magnitude and I = stimulus intensity. The R2 values were 0.921 and 0.922 for the CAS and VAS groups, respectively. Analyses of covariance revealed no significant differences in the characteristics of these relationships, i.e., R2, slope, or y intercept, by scale type. Children used the same scale to complete the Children's Pain Inventory (CPI), in which they rated the intensity and affect of 16 painful events (varying in nature and extent of tissue damage). Children's CAS and VAS responses on the CPI were similar. Analyses of covariance indicated that there were no differences in either intensity or affective ratings by scale type. However, the mean number of painful events experienced by children increased significantly with age (P = 0.0001). Intensity ratings decreased significantly with age (P = 0.002), but affective ratings did not vary with age. The new instrument has equivalent psychometric properties to a 165 mm VAS. However, the CAS was rated as easier to administer and score than the VAS, so it may be more practical for routine clinical use. Since the CAS has fulfilled the first two criteria for a pain measure (psychophysical properties and discriminant validity), it is ethical to proceed with the formal definitive test for construct validity, in which children from various clinical populations use the CAS scale to assess their own pain.
532 citations
"Dealing with uncertainty: parental ..." refers background in this paper
...(1995) and McGrath et al. (1998) in studies focusing on children with similar impairments....
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...Obviously self-report, the 'gold standard' for assessing children's pain (McGrath et al. 1996), is not an option within this group of children so other assessment strategies have to be explored and devised....
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TL;DR: In this article, a presentation of heuristics as an approach to human science research is presented, and a fresh perspective for the understanding and application of a heuristic approach to scientific investigation is presented.
Abstract: This article is a presentation of heuristics as an approach to human science research In its purest form, heuristics is a passionate and discerning personal involvement in problem solving, an effort to know the essence of some aspect of life through the internal pathways of the self The private and imaginative nature of heuristic inquiry introduces a unique challenge in research investigations and in philosophical conceptualizations of human science When utilized as a framework for research, it offers a disciplined pursuit of essential meanings connected with everyday human experiences Through discussion of its inherent processes and values, we hope to develop a fresh perspective for the understanding and application of a heuristic approach to scientific investigation Our aim is to awaken and inspire researchers to make contact with and respect their own questions and problems, to suggest a process that affirms imagination, intuition, self-reflection, and the tacit dimension as valid ways in the sear
507 citations
395 citations
"Dealing with uncertainty: parental ..." refers background in this paper
...Children with profound special needs1 are especially vulnerable to poor pain management (Anand and Craig 1997)....
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...1996), is not an option within this group of children so other assessment strategies have to be explored and devised. For those children where self-report is not an option, pain behaviour can act as a proxy (RCN 1999) although Beyer et al. (1990) have highlighted the fact that reliance on behavioural cues alone (in a non impaired population) can result in underestimation of pain intensity....
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...Anand and Craig (1997) and Craig (1997) present the difficulties of pain assessment in non-verbal groups; these parents are actually living these problems....
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