Abstract
Background: Caregivers play a crucial role in coordinating their children's health and social needs, particularly when managing care for multiple co-morbidities with different specialists. Optimizing care coordination through an integrated care perspective necessitates understanding the factors impacting this system, identifying gaps, and continuously improving health and social services for families. Traditional measures of service delivery, which focus on safety, financial stability, and satisfaction outcomes, often miss the mark in addressing families' needs comprehensively and ensuring care delivery is meeting their needs. Evaluating integrated care delivery requires the development of measures that reflect both social and medical needs to close existing gaps.
In the United States, only 74 Down syndrome clinics serve families across 34 states, providing essential resources, primary care, and specialized services in one location. Despite their critical role, many of these clinics face financial challenges threatening their sustainability. The value these clinics offer to families and children with Down syndrome remains largely unrecognized and unmeasured.
Approach: To assess integrated care for children with Down syndrome, a 40-item scale examining various integrated care outcomes was created alongside qualitative and quantitative survey questions. The scale focused on seven care domains essential to caregivers, including coordination, continuity, shared decision-making, dignity, information, communication, and resources. The survey was distributed to caregivers and healthcare providers involved in care outside specialized clinics, gathering data on demographics, children's health profiles, caregiver burden, and satisfaction levels.
Results: The survey received responses from 300 caregivers and 50 healthcare providers, representing 48 of the 74 Down syndrome clinics across 34 states. Primary respondents were predominantly married mothers with college degrees. The study revealed new empirical domains of integrated care not previously cited in the literature, leading to the identification of two additional domains through factor analysis. Notably, caregivers attending a Down syndrome clinic reported lower caregiver burden and higher satisfaction compared to those who had not accessed these services.
Caregivers and healthcare providers identified significant gaps in care delivery both within and outside these clinics. Communication was highlighted as a major barrier, alongside challenges in care coordination, resource acquisition, shared decision-making, and follow-up care. The open-ended responses indicated that logistical management created the most stress for caregivers and emphasized the need for better access to patient-centered information among providers.
Implications: The findings underscore a critical shortage of specialized clinics catering to the complex needs of the Down syndrome population. They illustrate the importance of comprehensive, expert-led integrated care that supports caregivers in navigating and coordinating their child’s health and social services. Reducing stress and enhancing care quality through integrating services and resources significantly benefits families, highlighting the need to recognize and sustain the value of these clinics. Further, this study highlights the need to understand and further explore unrealized integrated care domains that have not yet been evaluated and measured across the literature. Evaluating these domains will only further our understanding of how to evaluate integrated care outcomes to meet the needs of caregivers and patients.