Pain in Children With Developmental Disabilities: Development and Preliminary Effectiveness of a Pain Training Workshop for Respite Workers.

INTRODUCTION: Pain in children with intellectual disabilities (ID) is common and complex, yet there is no standard pain training for their secondary caregivers (ie, respite staff). OBJECTIVES: Determine perceived pain training needs/preferences of children's respite staff (phase 1) and, use this information combined with extant research and guidelines to develop and pilot a training (phase 2). METHODS: In phase 1, 22 participants responded to questionnaires and engaged in individual interviews/focus groups about their experiences with pain in children with ID, and perceived training needs/preferences. In phase 2, 50 participants completed knowledge measures and rated the feasibility of, and their own confidence and skill in, pain assessment and management for children with ID immediately before and after completing a pain training. They also completed a training evaluation. RESULTS: Participants viewed pain training as beneficial. Their ideal training involved a half-day, multifaceted in-person program with a relatively small group of trainees incorporating a variety of learning activities, and an emphasis on active learning. Phase 2 results suggested that completion of the 3 to 3.5-hour pain training significantly increased respite workers' pain-related knowledge (effect sizes: r=0.81 to 0.88), as well as their ratings of the feasibility of, and their own confidence and skill in, pain assessment and management in children with ID (effect sizes: r=0.41 to 0.70). The training was rated favorably. DISCUSSION: Training can positively impact respite workers' knowledge and perceptions about pain assessment and management. As such, they may be better equipped to care for children with ID in this area.

Education creates comfort and challenges stigma towards children with intellectual disabilities.

Children with intellectual disabilities (IDs) are frequent users of the healthcare system, yet nurses report they receive little education regarding specialized medical, social and relational needs of this population. Therefore, parents take on a greater burden of care while their child is in hospital than do parents of typically developing children. This article reports findings from a qualitative study that used feminist poststructuralism to examine the hospital experiences of eight children with IDs, 17 mothers and 12 nurses. Nurses and mothers reported a lack of knowledge and education regarding the healthcare of children with ID and identified a need for more education. Participants noted that physical care of children with ID was prioritized as more important than communication and relationships. This unintentional prioritization was socially and institutionally constructed through stigma and stereotypes about people with IDs. Nurses and parents offered suggestions to access and increase ID education for healthcare professionals.

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

Inadequate knowledge has contributed to inaccurate pain assessment and treatment for children with intellectual disabilities. AIM: Develop and evaluate pain knowledge measures and accompanying self-report ratings; determine their sensitivity to change. MATERIALS & METHODS: 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. RESULTS: After controlling for pretraining scores, pain knowledge and self-report ratings were significantly higher following pain training versus visual support training. CONCLUSION: These measures show promise for the evaluation of pain knowledge in secondary caregivers.

Caring for children with intellectual disabilities part 2: Detailed analyses of factors involved in respite workers' reported assessment and care decisions.

Respite workers (RW) commonly care for children with intellectual disabilities (ID), and pain is common for these children. Little is known about factors which inform RW pain assessment and management-related decisions. OBJECTIVES: To describe/determine the following in response to a series of pain-related scenarios (e.g., headache, falling): (1) factors considered important by RW when assessing children with ID's pain; (2) whether children's verbal ability impacts pain assessment factors considered; (3) RW assessment and management approach. PARTICIPANTS: Fifty-six RW (18-67 years, Mage=33.37, 46 female). PROCEDURE/MEASURES: In an online survey, participants read and responded to six vignettes manipulating child verbal ability (verbal, nonverbal) and pain source. RESULTS: The factors most frequently considered when assessing pain were child behavior (range: 20-57.4%), and history (e.g., pain, general; 3.7-38.9%). Factors did not vary by child's verbal ability. RW indicated varied assessment and management-related actions (range: 1-11) for each scenario. DISCUSSION: Findings suggest: a) factors informing pain assessment did not depend on whether or not the child was verbal and b) a degree of flexibility in RW response to pain across situations. While these findings are encouraging, ensuring RW have adequate pain assessment and management knowledge specific to children with ID is critical.

Caring for children with intellectual disabilities part 1: Experience with the population, pain-related beliefs, and care decisions.

Some children with intellectual disabilities (ID): experience pain more frequently than children without ID, express their pain differently, and are incapable of providing self-reports. No research has examined disability and pain-related beliefs of respite workers (RW) and their relations to pain assessment and management decisions for children with ID. OBJECTIVES: (1) compare disability and pain-related beliefs between RW and a sample with little experience in ID; (2) determine whether individuals' beliefs and personal characteristics are related to pain assessment and management decisions. PARTICIPANTS: Fifty-six RW (aged: 18-67 years, Mage=33.37, 46 female) and 141 emerging adults (aged: 18-31 years, Mage=19.67, 137 female). PROCEDURE/MEASURES: In an online survey, participants responded to six vignettes depicting pain in children with ID, and completed measures of pain and disability-related beliefs. RESULTS/DISCUSSION: Compared to those without experience, RW held more positive disability-related beliefs, t(192)=4.23, p<0.001. Participants' pain-related beliefs (e.g., sensitivity to pain) differed depending on severity of the child's ID and participant group. Participants' pain-related beliefs predicted care decisions. Results provide initial insight into RW pain-related beliefs about children with ID, and a basic understanding of the relations among pain beliefs, personal characteristics and pain-related decisions.

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

AIM: 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. METHODS: 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). RESULTS: Ratings significantly varied by pain source (e.g., headache was rated more painful than injections). Verbal ability did not impact ratings. CONCLUSION: 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.

Social communication features in children following moderate to severe acquired brain injury: a cross-sectional pilot study.

We compared the social communication deficits of children with moderate to severe acquired brain injury or autism spectrum disorder, while accounting for the role of attention-deficit hyperactivity disorder (ADHD) symptoms. Parents of 20 children aged 6 to 10 years (10 acquired brain injury; 10 autism spectrum disorder) completed the Social Communication Questionnaire, and Conners 3 Parent Short. A multivariate analysis of covariance revealed significant differences between groups in Social Communication Questionnaire restricted repetitive behavior scores, but not reciprocal social interaction or social communication. Multiple linear regressions indicated diagnosis did not predict reciprocal social interaction or social communication scores and that Conners 3 Parent Short Form hyperactivity scores were the strongest predictor of Social Communication Questionnaire reciprocal social interaction scores after accounting for age and Intelligence Quotient. The lack of difference in social communication deficits between groups may help in understanding the pathophysiology underlying the behavioral consequences of acquired brain injury. The link between hyperactivity and reciprocal interaction suggests that targeting hyperactivity may improve social outcomes in children following acquired brain injury.

[Validation of the French version of the non-communicating children's pain checklist - postoperative version]. / Validation francophone de la grille d'évaluation de la douleur-déficience intellectuelle - version postopératoire.

PURPOSE: The aim of the study was to test the validity of a French language version of the Non-Communicating Children's Pain Checklist - Postoperative Version (NCCPC-PV): grille d'évaluation de la douleur-déficience intellectuelle (GED-DI). METHODS: We assessed the intensity of pain in 87 intellectually disabled surgical patients recruited in four Canadian and French hospitals in the pre- and post-operative settings using the GED-DI, a 100-mm visual analogue pain scale (VAS) and the Rosen sedation scale. The validity of the GED-DI was measured by the difference in scores between pre- and postoperative conditions. The checklist was made up of 30 items divided into seven subgroups. Items were rated from 0 to 3 for a total score ranging from 0 to 90 points. RESULTS: The mean (standard deviation) age of the patients was 17 (11) yr and the mean mental age 24.5 (24) months. The total GED-DI score was 6.1 (4.9) pre- and 13.4 (11.2) post-surgery (P < 0.001). All subgroups had a higher score after surgery (P < 0.001). The receiver operating characteristic (ROC) curves, comparing the absence of pain to mild pain scores and moderate to severe pain scores, showed a cutoff at 6 (mild pain) and 11 (moderate to severe pain). CONCLUSION: The French version of the NCCPC-PV can be used to assess pain in non-communicating patients with intellectual disabilities in a postoperative setting. It has good content validity, as the total pre-surgery score for the GED-DI was significantly lower than the postoperative score, and showed a good concurrent validity when compared to the VAS.

Pain disrupts sleep in children and youth with intellectual and developmental disabilities.

Both chronic pain and sleep problems are common for children with intellectual and developmental disabilities (IDD). Although one study has revealed a relationship between having a medical condition and sleep problems in this population, the role of pain was not examined independently. Thus, the goal of this study was to clarify the specific role of pain in children's sleep problems. Caregivers of 123 children with IDD (67 male; mean age = 10 years, 7 months (SD = 49.7 months)) completed the Children's Sleep Habits Questionnaire (CHSQ) and provided information about children's pain, function and demographic characteristics. Children were grouped as having: No Pain (86), Treated Pain (21), or Untreated Pain (16). A Multivariate Analysis of Variance (MANOVA) indicated children who had pain had significantly more sleep problems overall (F(16, 222) = 2.2, p = .005), and more Night Wakings (F(2, 118) = 3.1, p = .05), Parasomnias (F(2, 118) = 5.0, p = .009) and Sleep Disordered Breathing (F(2, 118) = 5.1, p = .008) in particular. The pattern of sleep problems varied due to whether the child was taking pain medication. Children with pain also had significantly shorter typical sleep duration (F(2, 112) = 3.5, p = 0.035). The presence of sleep problems did not vary due to functional level or whether children were taking sleep medications. However, parents of children who were taking sleep medications reported that both Bedtime Resistance (F(1, 121) = 5.7, p = .019) and Sleep Duration (F(1, 121) = 6.0, p = .016) were more problematic for them. This data indicates pain disrupts sleep in children with IDD even when it is being managed pharmacologically, suggesting pain treatment may not be effective. These results suggest that pain should be considered during evaluation and management of sleep problems in children with IDD.

Parental assessment of pain coping in individuals with intellectual and developmental disabilities.

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles and how coping relates to individual factors. Seventy-seven caregivers of children and adults with IDD reported on coping styles using the Pediatric Pain Coping Inventory (PPCI), pain behaviour using the Non-Communicating Children's Pain Checklist-Revised (NCCPC-R), illness-related interactions using the Illness Behaviour Encouragement Scale (IBES) and past pain experience using the Structured Pain Questionnaire. Scores were compared across mental ages and interactions between pain coping and the other factors were explored. A Multivariate Analysis of Variance (MANOVA) by mental age group ('≤4 years', '5-11 years' and '≥12 years') revealed that those in the '5-11 years' mental age group used more coping styles than those in the '≤4 years' mental age group, and those in the '≥12 years' group used more cognitively demanding coping styles than the other two groups (F(10,130)=2.68, p=.005). Seeking Social Support (r=.39, p=.001) and Catastrophizing/Helplessness (r=.33, p<.01) coping styles were significantly related to a greater display of pain behaviour. Those with younger mental ages, who Seek Social Support or Catastrophize, also displayed more pain behaviour, which may be an attempt to seek external resources when pain is beyond their ability to deal with independently.

The relation between children's pain behaviour and developmental characteristics: a cross-sectional study.

AIM: To determine whether children with developmental disabilities show responses to pain that vary according to developmental level. METHOD: Factor analytical methods were used to explore whether pain behaviour is independent of developmental characteristics. As part of a longitudinal study, caregivers of 123 children (67 males, 56 females; age range 40 mo-21 y 6 mo) completed the Non-communicating Children's Pain Checklist-Revised (NCCPC-R), the Vineland Adaptive Behavior Scales, Second Edition (VABS-II), and the Pediatric Evaluation of Disability Inventory (PEDI). Deviation intelligence quotients (DIQs) were also generated. Two varimax rotated principal components analyses (PCAs) included the NCCPC-R subscales, DIQs, and age. One also included VABS-II subdomain scores and the other, PEDI scores, to allow examination of whether pain and developmental scores produced distinct components to evaluate the independence of pain behaviour from developmental factors. RESULTS: Children's mean age equivalents on the VABS-II were: Communication (36.4 mo, SD 34.8), Daily Living Skills (31.8 mo, SD 35.9), Socialization (43.2 mo, SD 49.9), and Motor Skills (21.6 mo, SD 20.3). Pain behaviour was distinct from developmental characteristics. The PCA including the VABS-II accounted for 78.4% of variance, with four components: Developmental Level, Pain Behaviour, Motor Development, and Chronological Age. The PCA that included the PEDI accounted for 69.4% of variance, with three corresponding components: Pain Behaviour, Developmental Level, and Chronological Age. INTERPRETATION: Pain behaviour was distinct from developmental factors in two separate analyses using two functional measures. Clinicians can be confident that pain assessment with the NCCPC-R is not affected by children's developmental level.

Assessing pain in children with intellectual disabilities.

Children with intellectual and developmental disabilities suffer more often from pain than their typically developing peers. Their pain can be difficult to manage, and assessment is often complicated by their limited communication skills, multiple complex pain problems and the presence of maladaptive behaviours. However, current research does provide some guidance for assessing their pain. Although self-report is an alternative for a small number of higher-functioning children, observational measures have the most consistent evidence to support their use at this time. For this reason, the Noncommunicating Children's Pain Checklist--Postoperative Version is recommended for children and youth 18 years of age or younger. However, other measures should be consulted for specific applications. Changes in function and maladaptive behaviour should also be considered as possible reflections of pain. In addition, children's coping skills should be considered because improving these may reduce the negative impact of pain.

Evidence of increased non-verbal behavioral signs of pain in adults with neurodevelopmental disorders and chronic self-injury.

The role of pain in relation to self-injurious behavior (SIB) among individuals with intellectual disabilities is not well understood. Some models of SIB are based on altered endogenous opioid system activity which could result in elevated pain thresholds. In this study, non-verbal behavioral signs indicative of pain as measured by the Non-Communicating Children's Pain Checklist (NCCPC) were compared between matched individuals with (N=35) and without (N=35) chronic self-injurious behavior (SIB) and neurodevelopmental disorders. Significant (p<.01) between group differences (SIB Group>Control Group) were found for the NCCPC Total Score, and for the Vocal, Social/Personality, and Eating/Sleeping subscales of the NCCPC. These results are not consistent with models of SIB in which pain sensitivity is assumed to be attenuated because of opioid system activity and are suggestive of intact and possibly amplified pain expression.

Evaluation of the responsiveness of the Impact of Pediatric Epilepsy Scale.

The Impact of Pediatric Epilepsy Scale (IPES) is an epilepsy-specific, health-related quality of life (HRQOL) questionnaire that is brief, accurate, and valid and assesses the influence of epilepsy on the child and family. This study prospectively investigates the responsiveness of the IPES, 3 years after the IPES questionnaire was initially validated. The same parents or caregivers completed the IPES. Changes in IPES scores were compared with changes in epilepsy severity. IPES Total scores were highly related to change in seizure severity (Wilks' lambda F (3, 11)=5.0, P<0.001). Those whose seizure severity decreased had decreased IPES scores (indicating improvement of HRQOL); those with increased seizure severity had increased IPES scores and reported poorer HRQOL; and those with no change in seizure severity had no change in the IPES score and no change in HRQOL. In conclusion, the IPES is useful for measurement of a child's epilepsy-specific HRQOL during treatment and is responsive to changes in epilepsy severity over time.

Judgments of pain in the neonatal intensive care setting: a survey of direct care staffs' perceptions of pain in infants at risk for neurological impairment.

OBJECTIVE: To determine whether healthcare professionals believe the pain of infants at risk for neurologic impairment differs from that of typical infants. SETTING: Neonatal intensive care units at 2 tertiary pediatric centers in Canada. PARTICIPANTS: Ninety-nine healthcare professionals who practice in the neonatal intensive care unit (51 nurses, 19 physicians, 18 respiratory therapists, 11 other). MAJOR MEASURES: Participants completed the Pain Opinion Questionnaire. It elicits beliefs regarding the similarity of the pain experienced by infants at mild, moderate, and severe risk for neurologic impairment relative to those without risk for neurologic impairment along 5 pain facets (ie, sensation, emotional reaction, behavioral reaction, communication, incidence). RESULTS: Pain Opinion Questionnaire scores varied by level of risk of neurologic impairment (mild, moderate, severe) and pain facet. Respondents believed infants with risk were overall less likely to experience pain similar to infants without risk as the level of risk increased [F(2,97) = 66.0, P < 0.001] and were more likely to have a reduced pain experience relative to infants without risk as the level of risk increased [F(2,97) = 62.2, P < 0.001]. Pain Opinion Questionnaire scores did not vary due to profession, experience, gender, or age. CONCLUSION: Professionals expressed the belief that neurologically impaired infants' pain experience is reduced, relative to infants without impairment, as their level of risk for neurologic impairment increases. This belief did not vary due to professional experience or personal factors. Future studies should investigate the source of these beliefs and their impact on the pain management provided to infants with risk for neurologic impairment.

Healthcare professionals' perceptions of pain in infants at risk for neurological impairment.

BACKGROUND: To determine whether healthcare professionals perceive the pain of infants differently due to their understanding of that infant's level of risk for neurological impairment. METHOD: Neonatal Intensive Care Units (NICU's) at two tertiary pediatric centers. Ninety-five healthcare professionals who practice in the NICU (50 nurses, 19 physicians, 17 respiratory therapists, 9 other) participated. They rated the pain (0-10 scale and 0-6 Faces Pain Scale), distress (0-10), effectiveness of cuddling to relieve pain (0-10) and time to calm without intervention (seconds) for nine video clips of neonates receiving a heel stick. Prior to each rating, they were provided with descriptions that suggested the infant had mild, moderate or severe risk for neurological impairment. Ratings were examined as a function of the level of risk described. RESULTS: Professionals' ratings of pain, distress, and time to calm did not vary significantly with level of risk, but ratings of the effectiveness of cuddling were significantly lower as risk increased [F (2,93) = 4.4, p = .02]. No differences in ratings were found due to participants' age, gender or site of study. Physicians' ratings were significantly lower than nurses' across ratings. CONCLUSION: Professionals provided with visual information regarding an infants' pain during a procedure did not display the belief that infants' level of risk for neurological impairment affected their pain experience. Professionals' estimates of the effectiveness of a nonpharmacological intervention did differ due to level of risk.

Risk factors for pain in children with severe cognitive impairments.

Diagnosing cause of pain in children with severe cognitive impairments is difficult due to their problems with communication. Identification of risk factors for specific pain etiologies might help professionals in this task. The aim of this study was to determine whether child-related characteristics increase risk for specific types of pain. Participants were the caregivers of 41 females and 53 males with moderate to profound mental retardation, who were aged 3 to 18 years 8 months (mean 10:1, SD 4:4) but who communicated at the level of a typical child of 13.8 months (SD 10 months): 44 of the children had cerebral palsy (CP) and 59 a seizure disorder. Caregivers reported the cause of children's episodes of pain for four 1-week periods over 1 year. Logistic regression analyses were used to predict occurrence of specific types of pain using children's demographic, medical, and physical characteristics. Children had 406 episodes of pain due to accident, gastrointestinal conditions, musculoskeletal problems, infection, recurrent conditions, and common childhood causes. Results indicated that a unique set of risk factors predicted each pain type in this sample. Significant risk factors for pain included: lack of visual impairment and leg impairment (accidental pain); seizures, leg impairment, and greater number of medications (non-accidental pain); being male and tube fed (musculoskeletal pain); age <7 years, absence of CP, visual impairment, and less frequent medical monitoring (infection pain); being female and with arm impairment (gastrointestinal pain); and being tube fed and taking fewer medications (common childhood pains). In most cases, models were more specific than sensitive, indicating that the significant predictors are more useful for eliminating potential pain causes. These results suggest that population risk factors may be helpful in structuring diagnostic investigations for individual children with severe cognitive impairments.

The incidence of pain in children with severe cognitive impairments.

BACKGROUND: Children with severe cognitive impairments are believed to suffer pain frequently. OBJECTIVE: To document the frequency, duration, and intensity of pain experienced by children with severe cognitive impairments. DESIGN: Cohort study using surveys during 1 year. SETTING: Tertiary-care pediatric center for 3 provinces in eastern Canada. PARTICIPANTS: Caregivers of 94 children and adolescents with moderate to profound mental retardation, aged 3 to 18 years (mean age, 10.1 years [SD, 4.3 years]). Forty-four children had cerebral palsy and 59 had a seizure disorder; 83 lived with family, and 11 in group homes. Main Outcome Measure Caregivers completed 4 semistructured telephone surveys, reporting the cause, duration (in minutes), and intensity (on a scale of 0-10) of children's pain during the previous week. RESULTS: A total of 406 episodes of pain occurred. During a 4-week period, 73 children (78%) experienced pain at least once, and 58 (62%) had nonaccidental pain. Accidental pain was most frequent (n = 28 [30%]), followed by gastrointestinal tract (n = 21 [22%]), infection (n = 19 [20%]), and musculoskeletal (n = 18 [19%]) pain. Each week, 33 to 49 children (35%-52%) had pain. Mean pain duration was longer than 9 hours per week (SD, 1.7-2.4 hours). Mean intensity was 6.1 (SD, 2.2) for nonaccidental pain and 3.8 (SD, 2.1) for accidental pain. Children with the fewest abilities had more nonaccidental pain (F4,89 = 3.7; P =.007), and children with greater motor abilities had more accidental pain (F4,89 = 2.8; P =.03). Pain did not vary with demographic characteristics. CONCLUSIONS: Children with severe cognitive impairments experience pain frequently, mostly not due to accidental injury. Children with the fewest abilities experience the most pain.