Development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan).

AIMS: This study aims to describe the development of a Cerebral Palsy Follow-up Registry in Jordan (CPUP-Jordan) and to provide a baseline child and parent demographic information, birth history of the child participants, and distribution of the participants based on topographical distribution of cerebral palsy (CP) and functional classification systems. METHODS: The CPUP-Jordan was developed using a similar framework of a follow-up surveillance programme for persons with CP in Sweden (CPUP). Standard assessment forms were utilized to collect data related to child and family demographics, child birth history, and functional classifications and physiotherapy and occupational therapy assessments and interventions. Research assistants were trained to conduct the assessments. A secured web-based system was developed to store data and disseminate knowledge maintained in the registry. Children with CP were included in the registry if they have confirmed diagnosis of CP. The ascertainment age of inclusion and the minimum age of survival required are 4 years. RESULTS: One hundred sixty-seven children were registered between 2013 and 2015 (mean age is 3.6 ± 3.0 years). Forty-two percent were born premature, and 48% were less than the normal birthweight. Perinatal causes were reported for 54% of the participants. The most common type of CP based on tone disturbance was spastic type, and the most common topographical distributions of motor dysfunction were quadriplegia followed by diplegia. Fifty-six percent of the participants had severe limitation in ambulation; 48% had restricted manual abilities, and 47% had limited communication abilities even with familiar family members and partners. CONCLUSIONS: The development of CPUP-Jordan registry for children with CP proved to be both feasible and informative. The registry baseline descriptive data were similar to those reported in previous research in Jordan supporting validity of the data. The implementation of CPUP-Jordan at national level is expected to have a positive impact on children with CP, clinicians, policymakers, and researchers.

Use of the Measure of Processes of Care (MPOC-20) to evaluate health service delivery for children with cerebral palsy and their families in Jordan: validation of Arabic-translated version (AR-MPOC-20).

BACKGROUND: Family-centred service (FCS) is widely accepted now as best practice in paediatric rehabilitation. The Measure of Processes of Care-20 items set (MPOC-20) is a valid and reliable self-report measure of parents' perceptions of the extent to which health services are family-centred. Arabic-translated and validated version of the MPOC-20 (AR-MPOC-20) is used to examine Jordanian families' perception of service providers' caregiving behaviours as they receive rehabilitation services for their children with cerebral palsy (CP). METHODS: Parents of 114 children with CP who are receiving services at different settings in Jordan were interviewed using the AR-MPOC-20. Participating children aged 4.1 ± 4.4 years, 53.5% were males. Children varied across gross motor functional classification system (GMFCS). Parents were mostly mothers (76.3%), with at least high school education (71.9%). RESULTS: Factor analyses of the AR-MPOC-20 yielded a five-factor solution with items loaded differently from the original measure. All items correlated best and significantly with their own Arabic scale score (rs: 0.91-0.26, P < 0.01). Internal consistency values of AR-MPOC-20 scales were acceptable (Cronbach's α: 0.69-0.82). Scale 'Providing Written Information' has the lowest average score (1.9 ± 1.6), while scale 'Respectful & Coordinated Care' has the highest average score (5.2 ± 1.5). CONCLUSION: The AR-MPOC-20 is found to be a valid and reliable measure for use with Arabic-Jordanian families of children with CP. FCS is not yet well implemented in Jordan, with parents reporting more need for information about their children's health and available services. Service providers are encouraged to apply FCS in paediatric rehabilitation, and giving more attention to effective communication and information exchange with families. AR-MPOC-20 is recommended for use for program evaluation.

Family resources for families of children with cerebral palsy in Jordan: psychometric properties of the Arabic-family resources scale.

BACKGROUND: Resource-based, family-centred practices are associated with better health, emotional, and social well-being of children with disabilities. The adequacy of resources available for families of children with disabilities in Middle Eastern countries has not been described adequately in part because of lack of measures that are culturally adapted to be used in Arabic countries. Therefore, this study aims to (1) to evaluate the psychometric properties of the Arabic-Family Resource Scale (A-FRS) on a sample of families of children cerebral palsy (CP); (2) examine the adequacy of family resources as perceived by parents of children with CP in Jordan; and (3) examine the influence of child and family demographic variables on how parents report resources available to their families. METHOD: A cross-section design was applied. One-hundred fifteen parents of children with CP with mean age 4.6 years (SD = 4.4) and their parents participated in the study. Research assistants interviewed the participants to complete the A-FRS, and family and child demographic questionnaire, and determined the Gross Motor Function Classification System level of children. RESULTS: The principal axis factoring of the A-FRS yielded a six-factor solution that accounted for 67.39% of the variance and that is different than the factor structure reported by the developers of the FRS. Cronbach's coefficient alpha of the total score of family resources was 0.86 indicating a good internal consistency and the test­retest reliability for the total scale score was r = 0.92 (P = 0.000) indicating excellent test­retest reliability. Child health and family income were significantly associated with the total score of the A-FRS. CONCLUSIONS: The A-FRS is a valid and reliable measure of family resources for Jordanian families of children with CP. Service providers are encouraged to use A-FRS with families to plan resource-based interventions in which family resources are mobilized to meet family needs.