Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals (original) (raw)

Measuring pain accurately in children with cognitive impairments: Refinement of a caregiver scale

The Journal of Pediatrics, 2001

Objective: To examine whether typical pain behavior, as reported by caregivers, could be used prospectively to predict future pain behavior and to derive a subset of core items from the Non-Communicating Children's Pain Checklist. Study design: Caregivers (n = 33) of children with cognitive impairments completed the Non-Communicating Children's Pain Checklist retrospectively and immediately after subsequent episodes of pain and distress in their homes. Odds ratios were computed for checklist items, and multiple regressions were used to predict numerical pain and distress ratings with items that had significant odds ratios. A logistic regression was used to test whether the items found to predict pain could correctly classify the presence or absence of pain in a new cohort of 63 children with similar cognitive impairments. Results: Seven of the checklist items had significant odds ratios: Cranky, Seeking Comfort, Change in Eyes, Less Active, Gesture to Part That Hurts, Tears, and Gasping. This subset of items significantly predicted numerical pain ratings by caregivers (multiple R = .70), but not distress ratings (multiple R = .31). In a second group of 63 children with cognitive impairments, this subset of items displayed 85% sensitivity and 89% specificity for pain. Conclusion: A subset of items from the Non-Communicating Children's Pain Checklist could predict pain in children with cognitive impairments. Caregivers' retrospective reports may be useful for clinicians making judgments about pain in these children.

Pain in children with intellectual disabilities: a randomized controlled trial evaluating caregiver knowledge measures

Pain management, 2017

Inadequate knowledge has contributed to inaccurate pain assessment and treatment for children with intellectual disabilities. Develop and evaluate pain knowledge measures and accompanying self-report ratings; determine their sensitivity to change. Young adults (n = 77; Mage = 18.89; standard deviation = 2.29; 67 females) were randomly assigned to one of two 'caring for children with intellectual disabilities' training programs (pain and visual supports). Participants completed pre-post-measures of pain knowledge and six self-report ratings of feasibility, confidence and perceived skill in pain assessment and treatment. After controlling for pretraining scores, pain knowledge and self-report ratings were significantly higher following pain training versus visual support training. These measures show promise for the evaluation of pain knowledge in secondary caregivers.

Pain expression in children with an intellectual disability

European Journal of Pain, 2010

Background: Children with an intellectual disability (ID) are sometimes unable to verbalize and describe their painful experience; therefore family members and health carers can assess the intensity of the pain only from the behaviour exhibited by the children. Aim and method: The purpose of this descriptive and exploratory study was to examine the behavioural pain expression in 30 children with ID aged from 5 to 18 years in a surgical context. Children were matched with 30 typically developing children of the same chronological age and 30 typically developing children of the same developmental age. Results: The results showed the influence of the level of expressive communication on the pain expression. Children who were able to verbalize their pain exhibited a normative pain expression with behavioural traits similar to those of typically developing children of the same developmental age. Children who were unable to verbalize their pain produced particular pain expressions with behavioural traits that were atypical and without a communicative goal. Conclusion: Pain expression modalities are extremely different between children able to verbalize their pain and those unable to do so. This study confirmed the necessity to take into account the particularities of each child with ID in order to individualize the pain management and avoid misdiagnosis and the under treating of pain in non verbal children.

Brief Report: Behaviors Identified by Caregivers to Detect Pain in Noncommunicating Children

Journal of Pediatric Psychology, 2002

and Finley (1999) argue there is a lack of agreement between studies exploring caregivers' ability to assess pain, with methodological problems making the findings unclear. Most studies are based on caregivers' perception of pain in children without learning disabilities and therefore may not reflect caregivers' assessment of pain in their noncommunicating child. Two groups of researchers have devised scales for assessing pain in noncommunicating children,

The development and evaluation of the pain indicator for communicatively impaired children (PICIC)

Pain, 2002

A previous study found that parents of communicatively impaired children with severe cognitive impairments identified six core cues as indicating definite or severe pain in their child (J. Pediatr. Psychol. 27 (2002) 209). The frequency of each cue was assessed by 67 caregivers of communicatively impaired children, twice per day over a 1 week period. On each occasion the caregivers also rated whether they considered their child to be in pain and the severity of any pain. There was a statistically significant relationship between five of the cues and the presence and severity of pain. The single cue of screwed up or distressed looking face was the strongest predictor and on its own correctly classified 87% of pain and non-pain episodes. The study highlights the potential clinical utility of a short carer completed assessment to assess pain in this vulnerable group of children.

Behavioral Pain Indicators in People With Intellectual Disabilities: A Systematic Review

The Journal of Pain, 2013

People with intellectual disabilities (IDs) have a higher risk of painful medical conditions. Partly because of the impaired ability to communicate about it, pain is often undertreated. To strengthen pain assessment in this population, we conducted a systematic review to identify behavioral pain indicators in people with IDs by using Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English, 4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8) an association between observable behavior and pain experience. From 527 publications, 27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral pain indicators, motor activity, facial activity, social-emotional indicators, and nonverbal vocal expression were the most frequently reported. Most of the behavioral pain indicators are reported in more than 1 study and form a possible clinical relevant set of indicators for pain in people with IDs. Determination of a behavioral pattern specific for pain, however, remains a challenge for future research.

Pain Assessment Among Non-Communicating Intellectually Disabled People Described by Nursing Staff

The Open Nursing Journal, 2010

The purpose of this study was to describe pain assessment among non-communicating intellectually disabled people living in long term care described by nursing staff. The target group of the study consisted of the nursing staff working at seven mental retardation units in different parts of Finland. The data were collected during spring 2008 by a semi-structured questionnaire (Non-communicating Children's Pain Checklist -Revised, N=222), and the response rate was 82% (n=181). The data were analyzed by statistical methods (Kruskall-Wallis test, Mann-Whitney U test) and by content analysis. The findings were described as parameters, frequencies, percentages, and as statistical significance.

Observer perceptions of pain in children with cognitive impairments: vignette development and validation

Pain management, 2015

Develop vignettes depicting different pain types in verbal and nonverbal children with cognitive impairments that could help examine pain assessment and management decisions of secondary caregivers, and conduct initial convergent and divergent validity analyses. For six vignettes, 76 undergraduate students (38 females, mean age = 19.55) rated (0-10): pain intensity, difficulty rating pain intensity, need for medical attention and need for other attention (e.g., physical comfort). Ratings significantly varied by pain source (e.g., headache was rated more painful than injections). Verbal ability did not impact ratings. Vignettes could serve as an alternative method to study pain decisions by caregivers of children with cognitive impairments when ethical barriers limit more naturalistic research.

Pain in people with developmental disabilities: A scoping review

The expression of pain or pain behaviour is unique for each per son with or without developmental disability (DD*). Lack of pain assessment and management creates health disparities for people with DD. Little research has been done to support care guide lines. This scoping review was undertaken to summarize the literature about what is known about pain in people with devel opmental or intellectual disabilities. Studies which include people with autism have been included, recognizing that these individu als may or may not always have difficulties in verbal expression or selfinjurious behaviour. Scoping reviews map the literature to clarify boundaries, identify gaps in evidence and identify areas of research priorities. This scoping review identified four main themes of research related to pain in people with DD: identifying pain; parentalcaregiver report; pain measures and practice rec ommendations. This paper describes the method of this scoping review and the findings related to these four main themes.