Nihad A. Almasri

Profiles of family needs of children and youth with cerebral palsy

BACKGROUND To identify profiles of family needs of families of children and youth with cerebral palsy (CP), and determine whether profile membership is related to child, family and service characteristics. METHODS Participants were mostly mothers (80%) of 579 children and youth with CP. A family member completed modified version of the Family Needs Survey and questionnaires about their child, family and services. Research assistants determined the Gross Motor Function Classification System levels. K-means cluster analysis identified profiles of needs. Cluster membership was analysed to examine differences in clusters based on selected characteristics. RESULTS Four profiles of needs were identified: Low needs, Needs related to community and financial resources, Needs related to child health condition and High needs. Profile membership was differentiated based on child/youth gross motor function, adaptive behaviour, family relationships, family income, access and effort to co-ordinate services. CONCLUSION Despite heterogeneity among individuals with CP and their families, four profiles of family needs were identified. In total, 51% of families had low needs suggesting that they are effectively managing their childrens health conditions while 11% of families had high needs that may require high levels of services and supports. Service providers are encouraged to partner with families, provide anticipatory guidance and co-ordinate services.

Predictors of needs for families of children with cerebral palsy

Abstract Background: This study examined child, family and service characteristics that are predictors of family needs for community, financial, family support and services needs for families of children with cerebral palsy (CP). CP is a non-progressive neurological condition caused by lesions in the central nervous system resulting in limitations in motor function and associated co-morbid conditions. Children with CP often require multiple health, rehabilitation, and community services. Purpose: To identify risk and protective factors among predictors of needed resources and services (i.e. community, financial, family support) and to discuss implications for coordination of medical, rehabilitation, and community services for children with CP and their families. Methods: Secondary data analysis was conducted with a national dataset (n = 441) of mothers of children with CP. The average age of children was 10.7 years (SD = 4.5) and was distributed across the various Gross Motor Function Classification System levels. Four logistic regression models were conducted to examine predictive power of child, family and current service characteristics on needed resources and services. Results: Limited child gross motor function was a risk factor (odds ratio (OR): 1.30–1.70) while perception of family-centered services (FCS) was a protective factor (OR: 0.57–0.63) in having the needs met. Conclusion: Mothers of children with CP who are able to walk, reported strong family relationships, and perceived need-oriented and FCS expressed less needs for community, financial, family support and services’ resources needs. Implications for service providers are provided. Implications for Rehabilitation Over 90% of participant mothers of children and youth with CP expressed needs for medical, rehabilitation, school-based and community-based services for their children. Mothers of children and youth with CP who have severe limitation in functional mobility or might use wheeled mobility were at higher risk for expressing family needs related to locating community resources, paying for medical expenses and finding resources that support their family functioning. Mothers of children and youth with CP who perceived family-centered, respectful and supportive, and accessible services for their children were at lower risk of expressing needs for community, financial and family support resources.

Cerebral palsy in Jordan: Demographics, medical characteristics, and access to services

ABSTRACT This study examined characteristics of children with cerebral palsy (CP) in Jordan and the services they receive based on parents’ report. Profiles of the children and services received were developed based on their functional level on the Gross Motor Function Classification System. Results showed that 74.1% of the children have spasticity. Common associated impairments included speech (60.3%) and visual (40.5%) impairments. The most frequent service received was physical therapy (90.4%). Knowledge of needs of children with CP and current service utilization is helpful for future program planning. Services need to be individualized according to the child’s age and functional limitations.

Psychometric properties of the Arabic Family Support Scale for families of children and youth with cerebral palsy in Jordan

Abstract Background Knowledge about family support systems available for Jordanian families of children with cerebral palsy (CP) is limited due to the lack of culturally valid measures of family support. The psychometric properties of the Arabic version of the Family Support Scale (A-FSS) were examined. Methods Parents of 115 children with CP who were receiving services at different settings in Jordan were interviewed using the A-FSS. Results Spouse and professional helpers were rated as the most helpful sources of support, whereas early childhood intervention programs and social groups were the least helpful. A valid structure of the A-FSS was presented for Jordanian families of children with CP with an acceptable level of internal consistency. Conclusions The A-FSS is a valid and reliable measure of family support for Jordanian families of children with CP. Service providers are encouraged to use A-FSS with families to explore options for using sources of support to cope with their childrens disability.

Inter-rater agreement of the Arabic Gross Motor Classification System Expanded & Revised in children with cerebral palsy in Jordan.

Abstract Purpose: To examine the agreement among parents-report, research physiotherapists-report, and clinical physiotherapists-report using the Arabic-Gross Motor Classification System Expanded & Revised (GMFCS E&R) in classifying Jordanian children with cerebral palsy (CP). Methods: One-hundred and sixteen child with CP [mean age 4 years 7 months (SD = 4 years 5 months)] participated in the study. Parents were asked to classify their children using the Arabic-GMFCS family report questionnaires. Clinical and research physiotherapists were asked to classify children using the Arabic-GMFCS E&R. Agreement between respondents was determined using Cohen’s linear weighted kappa statistic. Results: An excellent level of agreement was reported between research physiotherapists and clinical physiotherapists, substantial level of agreement between parents and research physiotherapists and moderate agreement between parents and clinical physiotherapists. Conclusions: The Arabic-GMFCS E&R is a reliable classification system that can be administrated by health care providers and parents of children with CP in Jordan to help plan services for children. Implications for Rehabilitation The Arabic GMFCS E&R is a reliable and user friendly system that can be administrated by health care providers and parents of children with CP in Jordan to guide services planning. Classifying the children with CP should be performed by the team members (including the family and the children when they are transitioning from childhood to adulthood) independently first, then discussed among and consensus can be reached. The Arabic GMFCS E& R is a reliable classification system that can be used in Jordanian health care system despite the fact that therapists who practice in these settings were not familiar with this classification.

Parents' Perception of Receiving Family-Centered Care for Their Children with Physical Disabilities: A Meta-Analysis

ABSTRACT Aims: Understanding parent perceptions of family-centered care (FCC) is important to improve processes and outcomes of childrens services. Objective: A systematic review and meta-analysis of research on the Measures of Processes of Care (MPOC-20) were performed to determine the extent parents of children with physical disabilities perceive they received FCC. Methods: A comprehensive literature search was conducted using four databases. A total of 129 studies were retrieved; 15 met the criteria for the synthesis. Meta-analysis involving 2,582 mothers and fathers of children with physical disabilities mainly cerebral palsy was conducted for the five scales of the MPOC-20. Results: Aggregated mean ratings varied from 5.0 to 5.5 for Providing Specific Information about the Child; Coordinated and Comprehensive Care; and Respectful and Supportive Care (relational behaviors) and Enabling and Partnership (participatory behaviors) indicating that, on average, parents rated FCC as having been provided to “a fairly great extent.” The aggregated mean rating was 4.1 for Providing General Information, indicating FCC was provided “to a moderate extent.” Conclusions: Service providers are encouraged to focus on child and family needs for general information. Research is needed to better understand parent perspectives of service provider participatory behaviors which are important for engaging families in intervention processes.

The Psychometric Properties of the Arabic Preschool Activity Card Sort

Background The Preschool Activity Card Sort (PACS) is an interview-based assessment tool to measure participation of preschool children with age range from 3 to 6 years. Objective of Study The purpose of this study was to establish the psychometric properties of the recently translated Arabic PACS (A-PACS). Methods One hundred fifty-one Jordanian parents participated in the study representing different geographical areas. Children were almost equally distributed between males and females and into three age groups. Construct and concurrent validity were examined as well as the internal consistency of the scale and the test-retest reliability. Findings The A-PACS was able to differentiate between the participation level of young and old children in the domains of education, community mobility, and low demand leisure of the A-PACS giving evidence to its construct validity and it significantly correlated with some aspects of the Vineland Adaptive Behavior Scale (VABS) giving evidence to its concurrent validity. The A-PACS showed excellent overall internal consistency (α = .859) for all domains and good test-retest reliability (r = .976, p < .001). Conclusion The A-PACS can be considered as a valid and reliable tool to measure participation of preschool children with normal development from Arabic cultures. Future studies should focus on the validity of the A-PACS for use with children with disabilities.