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 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.

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 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.

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.

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.

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.

[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.

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.

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 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.

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.

Development and testing of a scale to assess interprofessional education (IPE) facilitation skills.

INTRODUCTION: Interprofessional education (IPE) is interactive and constructivist in nature and requires specific facilitation skills to engage participants in a unique body of content, interpersonal interaction, and learning from each other. This article describes the development and testing of a scale, the Interprofessional Facilitation Scale (IPFS), to assess educators' skills in facilitating IPE. METHODS: Following participation in an Interprofessional Facilitator Development Program, facilitators provided interprofessional workshops for health professionals caring for patients with cancer. Workshop participants (311 community health professionals) assessed IPE facilitation skills with the use of the IPFS. RESULTS: Psychometric testing of the scale demonstrated high reliability and strong construct and content validity. Factor analysis produced a 2-factor solution that explained 62.1% of the scale variance. The factors "Encouraging IP interaction" and "Contextualizing IPE" were psychometrically rigorous and supported by the literature as being critical to facilitating successful IPE. DISCUSSION: The IPFS can be used in facilitator development as a concise guide to IPE facilitation skills and for assessment and further enhancement of IP facilitation competencies. Further study is required to assess the scale in diverse settings, with preservice learners, and over the longer term.