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\u27s pain; (2) whether children\u27s 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\u27s 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 \u3c 0.001. Participants’ pain-related beliefs (e.g., sensitivity to pain) differed depending on severity of the child\u27s 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

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

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\u27s 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\u27 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\u27 knowledge and perceptions about pain assessment and management. As such, they may be better equipped to care for children with ID in this area

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 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

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

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 Non-communicating 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