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

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.

Tracing the Use of the Family Management Framework and Measure: A Scoping Review.

This article reports the results of a scoping review of research applications of the Family Management Style Framework (FMSF) and the Family Management Measure (FaMM). We identified 32 studies based on the FMSF and 41 studies in which the FaMM was used, 17 of which were based on the FMSF. Both the framework and measure have been used by investigators in multiple countries, with most applications of the FaMM outside the United States. Although the FMSF and FaMM were originally developed for use with families in which there was a child with a chronic physical condition, both have been applied to a broader range of health conditions and to studies focusing on families with an adult member facing a health challenge. Based on our findings, we make recommendations for how researchers can more fully address all aspects of the FMSF.

Measurement of Family Management in Families of Individuals With Down Syndrome: A Cross-Cultural Investigation.

Down syndrome (DS) is the most common genetic cause of intellectual disability worldwide. The purpose of this analysis was to determine the internal consistency reliability of eight language versions of the Family Management Measure (FaMM) and compare family management of DS across cultures. A total of 2,740 parents of individuals with DS from 11 countries completed the FaMM. The analysis provided evidence of internal consistency reliability exceeding .70 for four of six FaMM scales for the entire sample. Across countries, there was a pattern of positive family management. Cross-cultural comparisons revealed parents from Brazil, Spain, and the United States had the most positive family management and respondents from Ireland, Italy, Japan, and Korea had the least positive. The rankings were mixed for the four remaining countries. These findings provide evidence of overall strong internal consistency reliability of the FaMM. More cross-cultural research is needed to understand how social determinants of health influence family management in families of individuals with DS.