Dr. Natalie Williams
Date of this Version
Barker, S. (2021). Validation of a Brazilian Portuguese Measure of Family Resources in a Sample of Parents to Children with Congenital Zika Virus Syndrome [Unpublished master's thesis]. University of Nebraska-Lincoln.
In the aftermath of the 2015 Zika virus outbreak in Brazil, thousands of children and their families continue to face challenges associated with Congenital Zika Syndrome, a developmental condition associated with microcephaly and other serious birth defects affecting the central nervous system. Family-centered rehabilitative care is critical to optimize the trajectories of children who have significant developmental disabilities like CZS. These services involve assessing for the presence of family resources that may help to promote positive outcomes for children. Little is known regarding family resources in the context of caring for a child with CZS in Brazil due to the absence of validated measures for this population.
This study is part of a larger research endeavor examining the psychological adaptation and needs of caregivers to children with CZS. This thesis project had two aims. The first aim was to describe the translation and cultural adaptation of the Family Resource Scale, a widely used measure of family resources, for use in a Brazilian Portuguese sample. The second aim was to explore the measurement quality of the resulting adapted measure (referred to as the Brazilian-Family Resource Scale, or B-FRS). A rigorous translation process that emphasized linguistics as well as cultural appropriateness was utilized following published guidelines for the cross-cultural translation of questionnaires. The resulting 27-item B-FRS was determined to be both theoretically related and reflecting the contextual intent of the original measure. A four-factor scoring approach yielded acceptable internal consistently estimates for the subscales and total scale score. Overall, low levels family resources were reported by caregivers of children with CZS in this sample. Low family resources were associated with poorer parental psychosocial wellbeing. Confirmatory factor analysis of the B-FRS in a larger sample is recommended. Practitioners in Brazil should consider family and caregiver needs and resources to provide family-centered care that is effective for the child and engage the family in a way that promotes a positive developmental trajectory.
Advisor: Natalie Williams