Measurement of joint motion: A guide to goniometry

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.

Pain in children with cerebral palsy: common triggers and expressive behaviors

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.

/pdf/pain-fatigue-and-school-functioning-in-children-with-s5prq4vw2r.pdf

Pain, Fatigue, and School Functioning in Children with Cerebral Palsy: A Path-Analytic Model

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.

Dealing with uncertainty: parental assessment of pain in their children with profound special needs.

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.

Pain in children with cerebral palsy: a review.

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.

/pdf/pain-anxiety-and-cooperativeness-in-children-with-cerebral-1nmrs0qa98.pdf

Marjoire Johann-Murphy

Papers

Pain, Anxiety, and Cooperativeness in Children with Cerebral Palsy After Rhizotomy: Changes Throughout Rehabilitation