Pain, Anxiety, and Cooperativeness in Children with Cerebral Palsy After Rhizotomy: Changes Throughout Rehabilitation
TL;DR: Results of the Observational Scale of Behavioral Distress and observer Likert ratings confirmed the hypothesis that children's pain and anxiety decrease over time and children's physical functioning and cooperativeness improve over time.
Abstract: Assessed pain, anxiety, physical functioning, and cooperativeness in 32 children with spastic cerebral palsy. This is the first study to assess children throughout rehabilitation following selective posterior rhizotomy. Results of the Observational Scale of Behavioral Distress and observer Likert ratings confirmed the hypothesis that children's pain and anxiety decrease over time. Children's physical functioning and cooperativeness improve over time. No significant correlation was found between pain and changes in physical functioning. Cognitive impairment, parental involvement, and children's pain behaviors explained 77% and 56% of the variance in two forms of cooperativeness. Research and clinical implications are discussed, and special considerations regarding pain assessment and management in this population are addressed.
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406 citations
TL;DR: Results indicated that children's ability to communicate pain verbally did not influence whether or not their parent reported observing pain, and stretching was the daily living activity most frequently identified as painful by parents, and the one with the highest mean pain intensity.
Abstract: To obtain parents' identification and description of the behaviors, health care procedures and daily living situations associated with pain in children with cerebral palsy (CP), surveys were sent to parents of children with CP recruited via a clinic case list and a parents' newsletter. Forty-three parents completed the survey. Results indicated that children's ability to communicate pain verbally did not influence whether or not their parent reported observing pain. Most children (67%) were reported to have displayed pain within the month prior to rating. All pain behaviors on the Non-Communicating Children's Pain Checklist (Dev Med Child Neurol 40 (1998) 340) were endorsed by some parents, and few additional pain behaviors were identified, suggesting that this instrument adequately samples the pain behavior of children with CP. Assisted stretching was the daily living activity most frequently identified as painful by parents (93% of those reporting pain), and the one with the highest mean pain intensity. Needle injection (40%) was the medical and nursing procedure most frequently identified by parents as painful for their children. Range of motion manipulation was the therapy most frequently identified as painful by parents (58%), and the one with the highest mean intensity. Parents are able to observe pain in their children with CP regardless of the child's verbal fluency. Knowledge of behaviors and painful situations identified by parents can facilitate management of pain in children with CP.
152 citations
TL;DR: Pain and fatigue represent potentially modifiable targets for interventions designed to improve school functioning in children with CP and supported the existence of an indirect relationship between diagnostic subtypes and school functioning that was partially mediated by both pain and fatigue.
Abstract: Objective This study tests a model of how pain and fatigue, independently or in combination, relate to school functioning in pediatric cerebral palsy (CP). Methods One hundred eighty-nine parents of children with CP completed the Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scales and the PedsQL™ 3.0 Cerebral Palsy Module. Seventy-three children with CP completed the PedsQL™. Path-analytic and mediational techniques were utilized to test the a priori model. Results Data from both parent proxy-report and child self-report were found to have acceptable model fit. Results supported the existence of an indirect relationship between diagnostic subtypes and school functioning that was partially mediated by both pain and fatigue. Conclusions Pain and fatigue represent potentially modifiable targets for interventions designed to improve school functioning in children with CP.
96 citations
TL;DR: A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions as well as an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years.
Abstract: Background. Despite advances in the assessment and management of children's pain, children with profound special needs are especially vulnerable to poor pain management. Their underpinning condition often severely compromises their ability to express pain through the usual verbal and behavioural routes. The lack of any appropriate framework for assessment results in a suboptimum and inaccurate approach to an important aspect of their care.
Purpose. The purpose of the study was to explore the ways in which parents of children with profound special needs assess and manage their children's pain.
Methods. Qualitative case study design underpinned the study using guided interviews with the 15 parents/carers (of 12 children aged 5–16 years with profound special needs).
Ethical approval. Ethics Committee approval was gained.
Findings. A number of themes emerged from the data including learning to live with pain, dealing with uncertainty, expression of pain and making decisions.
Conclusions. Parents felt that their child had learned to live with significant levels of chronic and acute pain. Assessment of pain was an uncertain and complex process requiring parents to draw on skills and knowledge developed over a number of years. Parents used different strategies for both the assessment and management of pain based on an intimate knowledge of their child's usual nonpain state. Even with a limited repertoire of behaviours available to them, children were able to express pain. Parents often felt isolated in relation to pain management and under-used as a resource by health professionals.
82 citations
Cites background from "Pain, Anxiety, and Cooperativeness ..."
...1999, Oberlander et al. 1999). Parents relied to a large extent on their 'checklist' consisting primarily of a range of behavioural indicators. These behavioural cues included facial and vocal expression, changes in tone and movement, and the child withdrawing into themselves. These behaviours were also described by Giusiano et al. (1995) and McGrath et al....
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TL;DR: A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population, and further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children withCP are warranted.
Abstract: Children with cerebral palsy (CP) face many challenges including impaired motor control and coordination, functional impairment, sensory disturbances, and, sometimes, communication difficulties and cognitive deficits. Pain also may be a problem for children with CP due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with CP undergo on a regular basis. A review of current literature indicates pain is a common experience for children with CP and has been understudied in this population. Further emphasis and research on appropriate assessment and management strategies sensitive to the unique characteristics and limitations of children with CP are warranted.
81 citations
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TL;DR: Analysis ofoded behaviors of pediatric oncology patients undergoing bone marrow aspirations and lumbar punctures, parents, and medical staff using the Child-Adult Medical Procedure Interaction Scale indicated that adults with the high coping children engaged in more coping-promoting behaviors than adults withThe low coping children.
Abstract: Coded behaviors of pediatric oncology patients undergoing bone marrow aspirations and lumbar punctures, parents, and medical staff using the Child-Adult Medical Procedure Interaction Scale. Children were grouped into high and low coping groups for three analyses. Results indicated that adults with the high coping children engaged in more coping-promoting behaviors than adults with the low coping children. Further, high coping children were more likely to respond with coping to coping-promoting prompts. However, both groups of children were more likely to respond by coping following coping-promoting antecedents than following distress-promoting or adult neutral antecedents. Both groups were more likely to respond with distress following distress-promoting antecedents. When interacting with children, staff engaged in a higher proportions of giving control to the child and apologies than did parents. Also, children were more likely to display coping than distress following staff's and parents' nonprocedural talk (distraction).
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106 citations
TL;DR: In this paper, a review of the effects of the parents' and staffs' behaviors on children's coping and distress during invasive medical procedures is presented, including studies that manipulate parental presence, interviews with children asking what helps them cope, an examination of behavior-behavior relationships, and studies that train parents to help their children during stressful events.
100 citations
TL;DR: The historical development of sensory rhizotomy, the current surgical technique, and its physiologic rationale are outlined; patient selection, postoperative treatment, and complications are discussed.
Abstract: The use of sensory rhizotomy has long been used for the treatment of spasticity. This review outlines the historical development of this treatment, the current surgical technique, and its physiologic rationale. Patient selection, postoperative treatment, and complications are also discussed.
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71 citations