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.

Diagnoses, labels and stereotypes: Supporting children with intellectual disabilities in the hospital.

Children with intellectual disabilities (IDs) and their parents continue to experience stigma within health-care systems. Whilst some research studies have examined the stigma associated with children who have IDs, there continues to be a gap in understanding how the experiences of these children, their parents and nurses have been constructed personally, socially and institutionally. Face-to-face semi-structured interviews were conducted with 17 mothers, 12 nurses and 8 children. Feminist post-structuralism and discourse analysis were used to examine the experiences of children, parents and nurses with the intent of understanding the dominant taken-for-granted everyday practices as well as hidden or marginalized practices. Four main themes emerged, which included the theme of Diagnoses, Labels and Stereotypes, which will be discussed in this article. Participants provided rich detail about their experiences in the hospital and how they addressed and often attempted to challenge the stigma associated with children with IDs.

Understanding the importance of relationships: Perspective of children with intellectual disabilities, their parents, and nurses in Canada.

Effective and therapeutic relationships between health care providers and clients are important elements for positive health outcomes. Children with intellectual disabilities (IDs) and their parents face unique challenges in establishing relationships with health care providers due to social and institutional stigma and stereotypes associated with children with IDs. In this article, we discuss the theme of building relationships in a hospital setting that emerged from a qualitative feminist poststructuralist study conducted in Canada with 8 children with IDs, 17 mothers, and 12 nurses who cared for them. Our research provides examples of how nurses and mothers worked in and through the system sometimes with frustration but also sometimes with positive excitement to develop supportive relationships. We can learn from these moments of tension and moments of success about how to work together to ensure positive relationships are provided to children with IDs, their parents, and health care professionals.

Development of a scale to measure health professions students' self-efficacy beliefs in interprofessional learning.

A need exists for measures to evaluate the impact of interprofessional education (IPE) interventions. We undertook development and evaluation of a scale to measure self-efficacy perceptions of pre-licensure students in medicine, dentistry and health professions. The scale was developed in the context of a project entitled, "Seamless Care: An Experiential Model of Interprofessional Education for Collaborative Patient-Centered Practice". As self-efficacy perceptions are associated with the likelihood of taking on certain tasks, the difficulty of those tasks, and perseverance in the face of barriers, we reasoned that understanding changes in students' perceptions and their relation to other outcomes was important. A 16-item scale was developed from a conceptual analysis of relevant tasks and the existing literature. Content validity was assessed by six Canadian IPE experts. Pre-licensure students (n = 209) participated in a pilot test of the instrument. Content validity was rated highly by the six judges; internal consistency of the scale (Cronbach's α = 96) and subscales 1 (α = .94) and 2 (α = .93) were high. Principal components analysis resulted in identification of two factors, each accounting for 34% of the variance: interprofessional interaction, and interprofessional team evaluation and feedback. We conclude that this scale can be useful in evaluating IPE interventions.

Transition of care to an adult spina bifida clinic: patient perspectives and medical outcomes.

PURPOSE: Transitioning care of patients with spina bifida to adult centers poses a challenge. We sought patient and parent perspectives on the transition process at our center and correlated these perspectives with medical outcomes. MATERIALS AND METHODS: Patients who attended the adult spina bifida clinic at our institution were invited to complete SF-36®, the Ambulatory Care Experience Survey and a Transition of Care Survey. Urological and neurosurgical medical outcomes were correlated with health status, clinic experience and perspectives on the transition process. Statistical analysis was done using SPSS®, version 16.0. RESULTS: Of 105 patients with spina bifida 24 participated in the study. SF-36 results showed that the physical health domain correlated with lack of employment (p = 0.006). Patients whose parents completed the surveys on their behalf were more likely to have physical limitations than the patients who completed surveys (p = 0.011). Urological and neurosurgical outcomes did not significantly affect SF-36, Ambulatory Care Experience Survey or Transition of Care Survey scores in this patient population. Patients and caregivers identified similar key elements and barriers in the transition process. Satisfaction with care at the pediatric center was higher than at the adult center. CONCLUSIONS: Transitioning care of patients with spina bifida from pediatric to adult care poses challenges for the health care system. Medical outcomes do not impact the patient perspective of the transition process. To optimize the transition of care we must address the barriers identified by patients and their caregivers.

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.

[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.

The influence of context on pain practices in the NICU: perceptions of health care professionals.

In this qualitative descriptive study, we explored health care professionals' perceptions of the influence of context (i.e., organizational culture, structure, resources, capabilities/competencies, and politics) on evidence-based pain practices. A total of 16 focus groups with 147 health care professionals were conducted in three neonatal intensive care units (NICUs) in central and eastern Canada. Three overarching themes emerged from the data, which captured influences on optimal pain practices in the NICU, including (a) a culture of collaboration and support for evidence-based practice, (b) threats to autonomous decision making, and (c) complexities in care delivery. These results were consistent with theoretical conceptualizations of how context influences practice, as well as recent empirical research findings. This study supports the importance of context in shaping evidence-based practices by health care professionals in the management of pain in the NICU.

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.

Indicators of pain in neonates at risk for neurological impairment.

AIM: This paper is a report of a study to compare the importance and usefulness ratings of physiological and behavioural indicators of pain in neonates at risk for neurological impairment by nurse clinicians and pain researchers. BACKGROUND: Neonates at risk for neurological impairment have not been systematically included in neonatal pain measure development and how clinicians and researchers view pain indicators in these infants is unknown. METHODS: Data triangulation was undertaken in three Canadian Neonatal Intensive Care Units using data from: (a) 149 neonates at high, moderate and low risk for neurological impairment, (b) 95 nurse clinicians from the three units where infant data were collected and (c) 14 international pain researchers. Thirteen indicators were assessed following heel lance in neonates and 39 indicators generated from nurse clinicians and pain researchers were assessed for importance and accuracy. Data were collected between 2004 and 2005. RESULTS: Across risk groups, indicators with the highest accuracy for discriminating 'pain' among neonates were: brow bulge (77-83%), eye squeeze (75-84%), nasolabial furrow (79-81%), and total facial expression (78-83%). Correlations between nurse ratings and neonatal accuracy scores ranged from moderate to none (mild risk r = 0.52, P = 0.07; moderate r = 0.43, P = 0.15; high r = -0.12, P = 0.69). Researchers demonstrated a better understanding of the importance of pain indicators (mild risk, r = 0.91, P < 0.001; moderate 0.85, P < 0.001; 0.0002; high r = 0.64, P = 0.019) than nurse clinicians. CONCLUSION/DISCUSSION: Facial actions were rated as the most important indicators of neonatal pain. However, as neurological impairment risk increased, physiological indicators were rated more important by nurse clinicians and pain researchers, opposite to pain indicators demonstrated by neonates.

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.

Changes in physiological and behavioural pain indicators over time in preterm and term infants at risk for neurologic impairment.

BACKGROUND: Approximately 10% of infants admitted to a Neonatal Intensive Care Unit (NICU) are at risk for Neurological Impairment (NI). While we have limited knowledge on the influence of NI risk on pain responses, we have no knowledge of how these responses change over time. OBJECTIVE: To compare physiological and behavioural pain responses of infants at three levels of NI risk during the NICU neonatal period (Session 1) and at 6 months of age (Session 2). DESIGN/METHODS: Prospective observational design with 149 preterm and term infants at high (Cohort A, n=54), moderate (Cohort B, n=45) and mild (Cohort C, n=50) risks for NI from 3 Canadian tertiary level NICUs. Infants were observed in the NICU during 3 standardized phases of a heel lance: baseline, stick and return-to-baseline. At 6 months, infants were observed during the same three phases during an intramuscular immunization injection. Physiological (heart rate, oxygen saturation) and behavioural (9 facial actions, cry) responses were continuously recorded. RESULTS: A significant interaction of Phase by Session was found with less total facial activity observed during Session 2 (all p values<0.04). A significant interaction for Session by Cohort was found, showing that infants in Cohort A had significantly more change from baseline-to-stick phase for brow bulge, eye squeeze, nasolabial furrow and open lips between sessions with less facial actions demonstrated at Session 2 (all p<0.02). There were significantly lower mean and minimum heart rate (all p<0.02) and higher minimum and maximum oxygen saturation (p<0.04) at Session 2. Significantly higher mean and minimum fundamental cry frequencies (pitch) in Cohort B (p<0.04) were found in Session 1. Cohort A had significantly longer cry durations, but no significant differences in cry dysphonation. CONCLUSIONS: Behavioural and physiological infant pain responses were generally diminished at 6 months of age compared to those in the neonatal period with some differences between NI risk groups in cry responses. Future exploration into the explanation for these differences between sessions and cohorts is warranted.

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.

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.

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.

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.

Identification of pain indicators for infants at risk for neurological impairment: a Delphi consensus study.

BACKGROUND: A number of infant pain measures have been developed over the past 15 years incorporating behavioural and physiologic indicators; however, no reliable or valid measure exists for infants who are at risk for neurological impairments (NI). The objective of this study was to establish consensus about which behavioural, physiologic and contextual indicators best characterize pain in infants at high, moderate and low levels of risk for NI. METHODS: A 39- item, self-administered electronic survey that included infant physiologic, behavioral and contextual pain indicators was used in a two round Delphi consensus exercise. Fourteen pediatric pain experts were polled individually and anonymously on the importance and usefulness of the pain indicators for the 3 differing levels of risk for NI. RESULTS: The strength of agreement between expert raters was moderate in Round 1 and fair in Round 2. In general, pain indicators with the highest concordance for all three groups were brow bulge, facial grimace, eye squeeze, and inconsolability. Increased heart rate from baseline in the moderate and severe groups demonstrated high concordance. In the severe risk group, fluctuations in heart rate and reduced oxygen saturation were also highly rated. CONCLUSION: These data constitute the first step in contributing to the development and validation of a pain measure for infants at risk for NI. In future research, we will integrate these findings with the opinions of (a) health care providers about the importance and usefulness of infant pain indicators and (b) the pain responses of infants at mild, moderate and high risk for NI.