Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

Abstract

Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

Dental health care for children with Down syndrome: Parents’ description of their children's needs in dental health care settings

“…In a recent scoping review of care coordination needs of families of children with Down syndrome, Skelton and colleagues [ 24 ] identified three needs: communication, information and utilisation of health resources. Additional needs focused on individual, family and healthcare contextual factors.…”

Digital Technologies for Children and Parents Sharing Self-Management in Childhood Chronic or Long-Term Conditions: A Scoping Review

“…Regular review meetings were held between the two reviewers to discuss and reach a final consensus on any differences of opinion which arose in relation to the inclusion or exclusion of papers. This approach has been applied in other scoping reviews [ 32 ]. Full-text articles of the included papers were then retrieved and screened, using the same approach.…”

Effect of mHealth based intervention on Maternal Knowledge and Practices of Child Care: A quasi-experimental study

“…Currently, the mHealth application has been widely used as an educational tool to improve the health and well-being of children, health monitoring, lifestyle, and health promotion (Ruchala & James, 1997). Several previous studies have shown the effectiveness of applications for early detection of hearing loss in children (Yousuf Hussein, Swanepoel, Mahomed, & Biagio de Jager, 2018), education to families with Down Syndrome children (Skelton, Knafl, Van Riper, Fleming, & Swallow, 2021), maternal and child health (Rajak & Shaw, 2019), and tracking the dietary intake (Rajak & Shaw, 2019). The use of monitoring applications to monitor health has been recommended by the World Health Organization (World Health Organization, 2018).…”