Margo Orlin

Participation in Home, Extracurricular, and Community Activities among Children and Young People with Cerebral Palsy.

Aim  Participation in home, extracurricular, and community activities is a desired outcome of rehabilitation services for children and young people with cerebral palsy (CP). The purpose of this study was to investigate the effect of age and gross motor function on participation among children and young people with CP.

Family needs of parents of children and youth with cerebral palsy

BACKGROUND Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family-centred services. The aims of this study were to identify: (1) differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP; (2) the most frequent family needs; and (3) needs that differ on gross motor function level. METHODS A total of 501 parents (77.6% mothers) of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Childrens gross motor function level was classified using the Gross Motor Function Classification System. RESULTS Total number of family needs differed based on gross motor function level (P < 0.001) but not age. Parents of children/youth who use wheeled mobility expressed the highest number of family needs, while parents of children/youth who walk without restrictions expressed the fewest needs. Family needs for Information (P= 0.001), Support (P= 0.001), Community Services (P < 0.001) and Finances (P < 0.001) differed based on childrens gross motor function level. Over 50% of parents expressed family needs for information on current and future services, planning for the future, help in locating community activities and more personal time. Parents of children and youth who use wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. CONCLUSIONS The gross motor function of children/youth with CP has implications for collaboration with families to identify needs and co-ordinate services. Health professionals have a role to assist families with information needs and locating community services and leisure activities. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.

Determinants of Intensity of Participation in Leisure and Recreational Activities by Youth With Cerebral Palsy

OBJECTIVE To test a model of determinants of intensity of participation in leisure and recreational activities by youth with cerebral palsy (CP). DESIGN Prospective cohort study. SETTING Childrens hospitals (N=7). PARTICIPANTS Youth with CP (N=205; age, 13-21y) and their parents. The sample included 107 (57.2%) males and 26 (12.7%) to 57 (27.8%) youth in each of the 5 levels of the Gross Motor Function Classification System (GMFCS). INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES Youth completed the Childrens Assessment of Participation and Enjoyment by means of an interview. Parents completed the Pediatric Outcomes Data Collection Instrument, Family Environment Scale, Coping Inventory, Measure of Processes of Care, a demographic questionnaire, and a services questionnaire. RESULTS Structural equation modeling was used to test the model. Fit statistics indicate good model fit. The model explains 35% of the variance in intensity of participation. Path coefficients (P ≤ .05) indicate that higher physical ability, higher enjoyment, younger age, female sex, and higher family activity orientation are associated with higher intensity of participation. GMFCS level and caregiver education have indirect effects on intensity of participation. The path between services and intensity of participation was not significant. CONCLUSIONS Participation by youth with CP is influenced by multiple factors. The influence of physical activity supports the importance of activity accommodations and assistive technology for youth who are not capable of improving physical ability. Knowledge of family activity orientation is important for identifying opportunities for participation. The unexplained variance suggests that the model should include other determinants, such as physical accessibility and availability of transportation and community leisure and recreational activities.

Understanding Participation of Preschool-Age Children With Cerebral Palsy

Participation in home, school, and community activities is a primary outcome of early intervention services for children with disabilities and their families. The objectives of this study were to (a) describe participation of preschool-age children with cerebral palsy (CP); (b) determine effects of sex, age, and gross motor function on intensity of participation; and (c) identify child, family, and service determinants of intensity of participation. A convenience sample of 85 preschool-age children with CP and their parents participated. Parents completed self-report measures on children’s participation, adaptive behavior, physical function, family functioning, and services. Children’s Gross Motor Function Classification System levels (Palisano, Rosenbaum, Bartlett, & Livingston, 2008) were determined by assessors. A multiple linear regression analysis was conducted to determine the variance in intensity of participation explained by the determinants. Children with limited self-mobility had a lower intensity of participation than children with independent upright mobility. Adaptive behavior, transfers and basic mobility function, and upper extremity and physical function explained 46% of the variance of intensity of participation.

Direct effect of percutaneous electric stimulation during gait in children with hemiplegic cerebral palsy: a report of 2 cases.

The feasibility of using percutaneous intramuscular functional electric stimulation (FES) in children with cerebral palsy (CP) as a method to improve ankle kinematics and kinetics during gait was investigated. Two children with right hemiplegic CP had percutaneous intramuscular electrodes implanted into the gastrocnemius and tibialis anterior muscles of the involved limb. FES was provided during the gait cycle using force-sensing foot switches to detect gait phase transitions. The children ambulated using FES under 3 conditions (gastrocnemius on, tibialis anterior on, gastrocnemius and tibialis anterior on). For each condition, two 45-minute walking sessions were conducted per day for 1 week. Immediately after each week of practice, a gait analysis was performed at the subjects self-selected walking speed for that stimulation condition and without stimulation. Both children demonstrated improvements in ankle dorsiflexion angle at initial contact, peak dorsiflexion during swing, mean dorsiflexion during swing, and ankle work during early stance with tibialis anterior stimulation alone and combined gastrocnemius and tibialis anterior stimulation. Improvements in ankle work were found during late stance for both children with all stimulation conditions. These results suggest that percutaneous intramuscular FES was effective in improving aspects of ankle kinematics and kinetics of 2 children with hemiplegic CP.

Geographical patterns in the recreation and leisure participation of children and youth with cerebral palsy: A CAPE international collaborative network study

Purpose: To examine geographical variation in the leisure participation of children/youth with cerebral palsy (CP), using Childrens Assessment of Participation and Enjoyment (CAPE) data from Australia, Canada (Ontario and Quebec) and the US. Method: Data from 1076 children/youth ages 6–20 years with CP were included. Analyses examined CAPE diversity scores in activity types as a function of region, age group and Gross Motor Function Classification System (GMFCS) group, controlling for family income, education and child gender. Results: There were only two substantial geographical differences: children/youth from the US took part in the fewest active physical activities; those from Ontario took part in the most self-improvement activities. The youngest age group took part in the most recreational activities, and those in GMFCS level IV/V had the lowest levels of participation in recreational, active physical and self-improvement activities, confirming previous findings. Conclusions: There were more similarities than differences in participation patterns for the three countries.

Muscle Force and Range of Motion as Predictors of Standing Balance in Children with Cerebral Palsy

SUMMARY Children with cerebral palsy frequently receive therapeutic intervention to remediate standing balance deficits. Evaluation of the impairments associated with poor balance could facilitate more effective treatment programs. This study evaluated the relationship between lower extremity force production, range of motion and standing balance in thirty-five children between the ages of 6 and 14 years of age with spastic cerebral palsy. Standing balance was evaluated using the Pediatric Clinical Test of Sensory Interaction (P-CTSIB). Hand-held dynamometry was used to assess force production and goniometry was used to assess range of motion. The results indicated that force production and range of motion are highly related to standing balance. Blocked, hierarchical multiple regression analysis revealed that force production explained 41% of the variance in P-CTSIB scores in this sample, while range of motion explained an additional 13%. Therefore, the total variance explained by these variables was 54%. Results of this study suggest that impairment level testing may allow the development of more effective individualized intervention programs to remediate balance deficits. Clinical suggestions are provided.

Exploring physical therapy clinical decision making for children with spastic diplegia: survey of pediatric practice.

PURPOSE The purpose of this special interest report is to describe the outcomes of a research round table discussion regarding the physical therapy management of mobility for children with spastic diplegia. DESCRIPTION Sixty-two pediatric physical therapists and physical therapists assistants participated in focus groups during the Research Round Table at the American Physical Therapy Association (APTA) 1999 Combined Sections Meeting. A case description of a child with spastic diplegia and guiding questions were used to facilitate discussion. SUMMARY OF EXPERIENCE Common practices in patient management across the childs life-span emerged from the discussion. Practices in examination, evaluation and prognosis, and intervention differed depending on the age and function of the child and the familys needs. In general, therapists reported that younger children receive examinations that include standardized tests of development and ongoing intervention with a frequency of one to five times per week. In contrast, older children receive therapy services on an episodic basis that address their specific needs. The elements of patient management served as a useful framework for exploring decision making. IMPORTANCE TO PEDIATRIC PHYSICAL THERAPY The information compiled from this project needs to be validated through systematic inquiry. Therapists may, however, use the practices reported here to reflect on their clinical decision making and to identify questions for further exploration. This descriptive document is the first step in the development of a guideline for evidence-based practice. The development of such a clinical guideline could serve as an education tool for novice therapists, a program evaluation tool to ensure quality care, and a foundation for future research to promote evidence-based practice.

Immediate effect of percutaneous intramuscular stimulation during gait in children with cerebral palsy: a feasibility study

The feasibility of percutaneous intramuscular functional electrical stimulation (P‐FES) in children with cerebral palsy (CP) for immediate improvement of ankle kinematics during gait has not previously been reported. Eight children with CP (six with diplegia, two with hemiplegia; mean age 9 years 1 month [SD 1y 4mo; range 7y 11mo to 11y 10mo]) had percutaneous intramuscular electrodes implanted into the gastrocnemius (GA) and tibialis anterior (TA) muscles of their involved limbs. Stimulation was provided during appropriate phases of the gait cycle in three conditions (GA only, TA only, and GA/TA). Immediately after a week of practice for each stimulation condition, a gait analysis was performed with and without stimulation. A significant improvement in peak dorsiflexion in swing for the more affected extremity and dorsiflexion at initial contact for the less affected extremity were found in the GA/TA condition. Clinically meaningful trends were evident for improvements in dorsiflexion kinematics for the more and less affected extremities in the TA only and GA/TA conditions. The results suggest that P‐FES might immediately improve ankle kinematics in children with CP.

The Continuum of Care for Individuals With Lifelong Disabilities: Role of the Physical Therapist

Many individuals with lifelong disabilities (LLDs) of childhood onset are living longer, participating in adult roles, and seeking comprehensive health care services, including physical therapy, with greater frequency than in the past. Individuals with LLDs have the same goals of health and wellness as those without disabilities. Aging with a chronic LLD is not yet well understood; however, impairments such as pain, fatigue, and osteoporosis often present earlier than in adults who are aging typically. People with LLDs, especially those living with developmental disabilities such as cerebral palsy, myelomeningocele, Down syndrome, and intellectual disabilities, frequently have complex and multiple body system impairments and functional limitations that can: (1) be the cause of numerous and varied secondary conditions, (2) limit overall earning power, (3) diminish insurance coverage, and (4) create unique challenges for accessing health care. Collaboration between adult and pediatric practitioners is encouraged to facilitate smooth transitions to health practitioners, including physical therapists. A collaborative client-centered emphasis to support the transition to adult-oriented facilities and promote strategies to increase accessibility should become standard parts of examination, goal setting, and intervention. This perspective article identifies barriers individuals with selected LLDs experience in accessing health care, including physical therapy. Strategies are suggested, including establishment of niche practices, physical accessibility improvement, and inclusion of more specific curriculum content in professional (entry-level) doctorate physical therapy schools.