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PURPOSE: Health care for children with special health care needs (CSHCN) often includes a complex array of services. Access to rehabilitation services, durable medical equipment (DME), and medical technology has become more challenging for these children and their families. The primary purpose of this study was to describe families' experiences with access to these services for their CSHCN. SUBJECTS: The national database from the Family Partners Project (FPP) was used in this study. This database contains responses from over 2000 families across 20 states on the questionnaire: "Your Voice Counts! The Health Care Experiences of Families of Children with Special Health Care Needs." The FPP was conducted between 1997-2000 and is a collaborative enterprise between Family Voices and the Heller School of Social Policy at Brandeis University. METHODS AND MATERIALS: A questionnaire was developed to obtain information on a variety of topics related to health services for CSHCN. The final version contains 89 items. A mail survey was conducted to obtain data. ANALYSES: Descriptive statistics were generated to describe the sample and to identify problems in access to services. RESULTS: The mean age for children was 9 years (sd=4.6 years) and for parents was 39.3 years (sd=8.4 years). A majority of the children were male (58%) and Caucasian (71%). Parents' mean rating of their children's overall health was "good" and most (41%) reported their children's health conditions as "somewhat stable." Of the children needing therapy, nearly 40% (n=621) had problems with services. Of the 52% of respondents who reported that their child needed DME or medical technology, 8% were dissatisfied and 8% said their children needed but did nut get these services. The most frequently reported children's conditions were: developmental delay (52%), cerebral palsy (29%), and orthopedic or behavior problems (28% each). Children with any of these four conditions had poorer overall health ratings than children without these conditions. Parents of children with developmental delay most frequently reported problems with therapy services (67%) and DME (59%) for their children followed by parents of children with cerebral palsy (41% and 53%, respectively). CONCLUSIONS: This study provides valuable information for physical therapists about the challenges of access to rehabilitation services for CSHCN and their families. Findings from this study will help physical therapists become more effective providers of family-focused care and more informed advocates for CSHCN and their families., O'Neil M. MCP Hahnemann University, Department of Rehabilitation Sciences, Philadelphia, [...]

PURPOSE: The primary purpose of this study was to identify predictors of parenting stress for mothers of children receiving early intervention physical therapy based on specific child and early intervention program factors. Another purpose was to examine the relationship between mothers' parenting stress levels and their perceptions of family-centered early intervention physical therapy. Also, the relationship between mothers' levels of parenting stress and their overall satisfaction with early intervention physical therapy was examined. PARTICIPANTS: Eighty mother-child dyads were randomly sampled and participated in the study. METHODS AND MATERIALS: Home visits were conducted for data collection. Mothers completed: 1) the Measures of Processes of Care Questionnaire (MPOC-56) providing information on mothers' perceptions of family-centered early intervention physical therapy on five subscales; 2) The Mother's Questionnaire providing demographic information and overall satisfaction scores; and 3) the Parenting Stress Index-Short Form (PSI-SF) providing information on three stress subscales. ANALYSES: Three hierarchical multiple regression analyses (MRAs) were conducted to identify predictors of stress for each PSI-SF subscale. Pearson correlations were calculated: 1) to examine relationships between PSI-SF and MPOC-56 subscale scores and 2) to examine the relationship between PSI-SF subscale scores and overall satisfaction scores. RESULTS: MRA results indicated that mothers' perceptions of their children's limitations explained a significant amount of variance in their stress on two PSI-SF subscales: Parent-Child Dysfunctional Interaction (r2=.21, p [is less than] .001) and Difficult Child (r2=.11, p [is less than] .003). Correlation analyses indicated significant and inverse relationships between four MPOC-56 subscale scores and the PSI-SF on the Difficult Child subscale. One significant correlation analysis was found between parent satisfaction and parenting stress on the Difficult Child subscale (r2= -.31, p [is less than] .01). CONCLUSION: Findings suggest that mothers' perceptions of their children's limitations are significant predictors of child-related stress while correlation results suggest that family-centered early intervention physical therapy may be a protective factor for child-related stress., This study was partially funded by the Department of Health and Human Services, Maternal and Child Health Bureau, Grant No. MCJ429391 and a Doctoral Dissertation Research Award from the Foundation [...]

Purpose: The purposes of this report are to: 1) describe the development of a data collection method for use with children receiving Botox injections in the Spasticity Management Clinic(SMC) of a pediatric rehabilitation hospital and 2) present descriptive data. Description: A physiatrist and physical therapist evaluate Children referred to the SMC. A new method was developed by clinic physical therapists to document changes in children following Botox injections. Revisions are ongoing and current documentation includes: Gross Motor Function Classification System for Cerebral Palsy (GMFCS); goniometric range of motion(ROM); spasticity (Ashworth); functional mobility (by clinical observations); and ease of caregiving (by family report). Observations: Data collection over the past 10 months indicates that 17 children, ages 2-15 years (mean = 9) have received lower extremity Botox injections and attended a follow-up appointment. GMFCS levels classified 47% of children into Levels IV and V and only 12% into Level I. A majority of children (71%) were diagnosed with cerebral palsy. One or combinations of the following muscles were injected: hip adductors, hamstrings, and gastrocsoleus. Nine injection patterns were identified with bilateral hamstrings (n=5, 29%) being the most common. Children were measured pre-injection and at follow-up (2-4 weeks post injection). ROM changes were found in ankle dorsiflexion (mean = 9 ° - 11 °) and popliteal angle (mean = 9 ° - 13 °). Ashworth scores on 10 of 12 children indicated decreased spasticity. Functional mobility changes were documented for two children on standing, level gait, and stairs. Parents reported improved ease of caregiving for children in Levels IV and V. All children received physical therapy pre and post injections. Conclusions: Only the impairment level measures were sensitive to change. The clinic documentation method was not sensitive to functional and family outcomes. Currently, more systematic measures are being investigated including the Gross Motor Function Measure (GMFM) for functional outcomes and the Canadian Occupational Performance Measure (COPM) for family outcomes. A questionnaire is being developed to document changes in physical therapy intervention (frequency, duration, type) associated with Botox injections., Fragala M, Russo K, Dumas H, O'Neil M, Rabin J; Department of Physical Therapy, Franciscan Children's Hospital and Rehabilitation Center, Boston, MA, USA [...]