Abstract
Objective: This caregiver case study applies the lens of relational coordination theory (RC) to examine the value of telehealth as a medium of care coordination for a pediatric patient with hypermobile Ehlers-Danlos Syndrome (hEDS) during the COVID-19 pandemic.Background: The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services. Delivering telehealth requires a high level of communication and coordination within and across providers as well as between providers, patients and their families. However, it is less clear how telehealth impacts the coordination of care. In this paper, we provide insight into the quality of care coordination between providers and an informal caregiver following policy changes to the provider payment structure in Massachusetts.Methods: This paper employs a single-case, autoethnographic study design where one of the authors uses their experiential insights, as mother of the patient, to inform a wider cultural and political understanding of the shift to remote caregiving for a pediatric patient with hEDS. Data was collected using reflective journaling, interactive interviews, and participant observation and analyzed using content analysis.Results: Findings revealed four interrelating roles of the caregiver including, logistics support, boundary spanner, home health aide, and cultural translator. The adoption of telehealth was associated with improved timeliness and frequency of communication between the caregiver and providers. Findings about the impact of telehealth adoption on accuracy of communication were mixed. Mutual respect between the caregiver and providers remained unchanged during the study period.Conclusions: This paper highlights areas where payer policy may be modified to incentivize timely communication and improve coordination of care through telehealth services. Additional insight from the perspective of an informal caregiver of a patient with a rare chronic disease provides an understudied vantage to the care coordination process. We contribute to relational coordination theory by observing the ways that caregivers function as boundary spanners, and how this process was facilitated by the adoption of telehealth. Insights from this research will inform the development of telehealth workflows to engage caregivers in a way that adds value and strengthens relational coordination in the management of chronic disease.
Highlights
The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services for remote care
Delivering telehealth requires a high level of coordination within and across providers as well as between providers, patients and their families and more research is needed to understand how telehealth impacts the coordination of care among caregivers
This initial work was subsumed into this current research project, which was re-directed to study how relational coordination between the caregiver and providers was impacted by increased use of telehealth during the pandemic
Summary
The COVID-19 pandemic has placed an unprecedented burden on the delivery of healthcare around the globe and has increased the reliance on telehealth services for remote care Responding to such a complex and changing environment has required coordinated efforts between providers, payers, and consumers of healthcare to maintain patient safety and quality of care. One such effort took place in Massachusetts in March 2020 with the enactment of an emergency order which required insurers to reimburse telehealth delivered over video and phone at the same rate as in-person visits to ensure provider and patient safety [1]. Looking at ways to increase care coordination for children with complex chronic conditions, Golden and Nageswaran [8] noted a need for more information sharing and quality communication between caregivers and the rest of the clinical team
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