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.

Empowerment, effective helpgiving practices and family-centered care.

Improving practices with families of pediatric patients is most likely to occur when nurses and other health care professionals more fully understand the characteristics and consequences of different approaches to their work. A review of relevant literature in the empowerment, helpgiving, and family-centered care fields suggests the kinds of beliefs, attitudes, and behaviors that will optimize benefits to families in different domains of functioning. Family-centered care is a special case of effective helpgiving, and effective helpgiving is a special case of an empowerment approach to working with people seeking professional advice and expertise.

Characteristics and consequences of help-giving practices in contrasting human services programs.

Relationships between human services program models and help-giving practices, and between both program models and help-giving practices and help-seeker control appraisals were examined in a study of 107 low socioeconomic background families. Three kinds of human services agencies were included in the study, each of which differed in terms of their implicit and explicit assumptions about the families they served and the roles professionals and families played as part of helping relationships. Results support the hypotheses that (a) a program philosophy that was family centered would be associated with more empowering help-giving practices compared to more professionally centered philosophies and (b) a family-centered program philosophy and empowering help-giving practices would be related to an enhanced sense of personal control over needed supports and resources from a target help-giver.

Family-centeredness of the Children's Health Care journal.

The extent to which authors of Children's Health Care articles showed increased attention to the elements of family-centered care following the publication of Shelton, Jeppson, and Johnson's (1987) book Family-Centered Care for Children with Special Health Care Needs was examined. A total of 223 parent-oriented and family-oriented articles published during the 1980 to 1991 period were analyzed. The findings showed greater incorporation of family-centered notions into published articles after versus before publication of the Shelton et al. book, although the year in which changes occurred and the magnitude of the changes were quite variable for different elements of care. In cases where increased attention was paid to the elements of care, different subsets of elements were more likely to be attended to by different authors.

Family-oriented early intervention policies and practices: family-centered or not?

This article includes a multimethod, multisource analysis and synthesis of the degree to which contemporary family-oriented early intervention policies and practices are family centered. Federal laws and legislation, state-level policy positions, and the viewpoints of service providers and consumers were analyzed as part of the study. The findings, taken together, indicate a movement toward adoption of family-centered early intervention policies and practices at the different levels of analysis. There are, however, discrepancies between what state-level policymakers and "street-level" providers and consumers see as current beliefs and practices within states.

The effect of social support on adolescent mothers' styles of parent-child interaction as measured on three separate occasions.

The purpose of this study was to determine the effect of social support on parent-child interaction in a group of 19 adolescent mothers. The subjects participated in a 20-week model demonstration program in which they worked in a preschool classroom with skilled caregivers who modeled facilitative styles of interacting with young children. Each subject was videotaped while interacting with a 1- to 2-year-old child upon entering the program, midway through the program, and at the end. Results showed that girls who were 16 years or older significantly increased their frequency of using responsive, engaging, and elaborative styles of behavior. Those under age 16 did not show significant changes in these three behaviors. Overall, subjects significantly increased the duration of time they spent observing the child's play behavior.

Stage transitioning in the sensorimotor development of Down's syndrome infants.

The relative amount of time necessary to move from stage-to-stage during the sensorimotor period was examined among a group of 30 Down's syndrome and 12 non-retarded infants. Stage transitioning was examined for the four transitional points between Stages II and VI for the seven branches of sensorimotor development on the Uzgiris-Hunt scales. The findings showed that the Down's syndrome infants generally took longer to move from one stage to the next even after their slower pace of development was taken into consideration.

Measuring the adequacy of resources in households with young children.

Both the reliability and validity of the Family Resource Scale (FRS) are described. The FRS is a 30-item rating scale for measuring the adequacy of resources in households with young children. The ordinality of the items, rank ordered from the most to least basic, was established in a study of 28 professionals. Both the reliability and validity of the scale was established in a second study of 45 mothers of preschool-aged children. The utility of the FRS for assessment and intervention purposes is discussed.

Mediating influences of social support: personal, family, and child outcomes.

The mediating influences of social support were examined in a study of 137 parents of mentally retarded, physically impaired, and developmentally at-risk children. Social system theory was used as a conceptual framework for assessing the effects of social support on personal well-being, parental attitudes toward their child, family integrity, parental perceptions of child functioning, parent-child play opportunities, and child behavior and development. A series of hierarchical multiple regression analyses by sets, controlling for family SES and income, child sex and age, and child developmental quotient and diagnosis showed that both satisfaction with support and number of sources of support had main and/or interactive effects in all sets of outcome measures. More supportive social networks were associated with better personal well-being, more positive attitudes, and more positive influences on parent-child play opportunities and child behavior and development. Findings were discussed in terms of both methodological and conceptual contributions to understanding the broad-based influences of social support.

Structural characteristics of sensorimotor development among Down's syndrome infants.

The structural features of sensorimotor intelligence were examined among two groups of Down's syndrome infants administered the seven Uzgiris and Hunt scales of infant psychological development. Two measures of associative relationships (stage congruence and intercorrelations) among the subjects' performances on these scales were subjected to both hierarchical cluster analysis and factor analysis to discern the underlying structure of the data. The analyses yielded between two and four clustering networks of behaviours for each sample of infants. Moreover, the clustering and factor solutions for both samples were quite alike. Comparisons of the findings with those in other investigations showed that both Down's syndrome groups manifested patterns of organization very similar to structural networks for more heterogeneously formed groups of mentally retarded subjects. The need for better designed comparative studies is noted.

Test settings and the sensorimotor performance of infants with Down's syndrome.

The effects of test setting (home vs classroom) on the sensorimotor performance of 7 Down's syndrome infants were examined. The 7 Uzgiris-Hunt scales were administered on 10 occasions over a 4-mo. period, yielding 5 home-classroom comparisons for each subject. Analyses of mean performance scores, intersetting test-retest reliability, and intrasetting stability indicated that test performance was minimally affected by test setting, but that intrasetting interindividual invariance in performance was less stable when the subjects were tested in a classroom environment.

Fostering the object construct: large-scale intervention with handicapped infants.

Parents provided their developmentally delayed infants with sequential experiences intended to foster the development of the object construct. The participants were enrolled in a multidisciplinary early intervention program serving a wide spectrum of impaired infants from a large, rural geographic area. In comparison with infants who were not exposed to object-construct intervention, infants who received training performed moderately but significantly higher on Scale I of the Uzgiris-Hung Ordinal Scales of Psychological Development.

Comparison of two procedures for fostering the development of the object construct.

To determine the extent to which training can effect acquisition and retention of the object construct, we exposed 21 severely mentally retarded individuals to training or control conditions for about 10 minutes per day on 8 days. There were two training procedures: one that seemed typical of previous efforts to foster the object construct and a second that differed primarily in the size of the steps in the systematic chain of tasks required of the subjects. Both procedures affected acquisition significantly and equally but neither appeared to result in long-term retention.