Early Literacy Research Library (ELRL) - Article

Reach Out and Read Implementation in a Pediatric Down Syndrome Clinic

Daniels, D., Wolter-Warmerdam, K., Holland, S., Hickey, F. (2022) Reach Out and Read Implementation in a Pediatric Down Syndrome Clinic. Journal of Pediatric Health Care, 36(3), 231–239.,

Access: Institutional Access

Publication year


study description

Cohort review.

core topic(s)

Reach Out and Read (ROR)

Population Characteristics

Medical Conditions and Disabilities

Exposures, Outcomes, Other

Child Behaviors and Skills , Home Language/Literacy/Learning Environment , Implementation and Evaluation , Parent Behaviors and Skills


To examine the first Reach Out and Read (ROR) program in a pediatric Down syndrome (DS) clinic in the United States and the literacy behaviors of young children with DS and their families.


Reach Out and Read (ROR).

outcomes evaluated

Child and family emergent literacy behaviors and skills.


Anna and John J. Sie Center for Down Syndrome (SCDS) Clinic at Children's Hospital Colorado.


This is a large cohort (n = 747) review of children with DS participating in ROR and a family literacy survey (n = 209). Data from the electronic medical records were included.

sample size

n=747 (children with DS); n=209 (survey participants)


Measure of Family Literacy and Emergent Skills: parent survey with questions about:

    • Family Information: number of years and months of child’s formal schooling, audio or visual impairment information, number and ages of other children living in the home, and parental education level.
    • General Information: activities that parent does with a child in a typical week, child’s three favorite things to do, and parent’s three current favorite things to do with the child.
    • Reading Information: age child started reading independently, defined as at least 80% with no help; feelings toward child’s lifetime reading potential; pediatrician or health provider’s prior discussions regarding reading and/or the ROR program; reading frequency, techniques, and behaviors of both parent and child; literacy access both within and outside of the home; and screen frequency of both parent and child.


On average, children with DS began independently reading at 6.15 years (standard deviation = 1.42). Overall, 36.7% of children with visual/audio impairments required additional encouragement. Time spent reading was impacted by the mother's education level. Differences were found among ROR participants with DS for reported favorite activity.


ROR is an important clinic-based literacy program for children with DS. Children with DS attain independent reading abilities similar to typically developing peers when provided appropriate resources. Additional support is needed to encourage reading enjoyment in this population.


Our study was the first to examine the implementation of ROR into a specialty pediatric DS clinic. One might speculate that children with more complex medical needs will seek out services from a pediatric hospital creating a population bias, although SCDS patients capture approximately 80% of Colorado’s population of children with DS and provide support for a population-based representation. Further investigation should determine the implication of this program in other DS specialty clinics and the DS pediatric population receiving care in general pediatric clinics. Prior research on ROR often excluded DS patients or any other children with developmental disabilities, so our results should be expanded on to include additional groups. Another limitation of the study was that the survey was completed by primary caregivers, which could result in a vulnerability to recall and reporting biases. Caregiver reporting was selected in this instance because the survey was specifically designed to better understand the literacy experiences of individuals with DS. Therefore, it was necessary to understand the perception of caregivers when it came to effective methods, resources, and behaviors. However, the implications for the current results would still be deemed relevant and informative for understanding the ROR program’s impact.