mHealth Family Self-management Intervention for Parents of Transplanted Children

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ABSTRACT Solid organ transplant has become the treatment of choice for a number of serious conditions that might otherwise result in end stage organ failure. In 2016, nearly 2,000 children underwent transplant in the US, costing an average of $400,000 for the transplant hospitalization. In our previous research with solid organ transplant families, parents who reported a lack of readiness for hospital discharge subsequently reported more difficulty coping, managing the complex continuing care at home and decreased family quality of life. When parents are unable to assimilate the detailed information required in managing their child's complex care issues, the child often requires hospital readmission, further escalating healthcare costs. We propose a novel individually tailored family centered self-management intervention using mobile healthcare technology (mHealth) to improve access to care and post discharge outcomes. Guided by the Individual and Family Self- Management Theory, this study will evaluate a mHealth Family Self-Management Intervention (myFAMI) that incorporates an individualized daily post-discharge interactive communication between families and Transplant Nurse via mobile smartphone technology. myFAMI tracks daily family coping, family self-management behaviors of complex care at home (difficulty managing medication administration and the medical follow-up regimen), and parent management of child's transplant symptoms (fever, pain, vomiting, diarrhea, other illness) for the first 30-days. The family member response to each of the nine daily questions may result in a pre- identified trigger and activate immediate notification to the Transplant Nurse. The notification will display the family member responses to inform the Transplant Nurse conversation with the parent regarding potential problems in order to mitigate complications. This multicenter study will recruit 40 family units, consisting of a primary and secondary family member of transplant recipients from two major pediatric institutions and will employ a randomized controlled trial design comparing myFAMI (n = 20) with standard post-discharge follow- up care (n = 20). This study aims to determine the feasibility of family use of myFAMI, Transplant Nurse response, and the efficacy of myFAMI specifically to improve access to care and 30-day post-discharge outcomes. We hypothesize that families who receive myFAMI will report improved post-discharge coping, family self-management behaviors for medication management and medical follow-up, family management of child transplant symptoms, decreased use of healthcare resources and improved family quality of life. This theory-based research is innovative integrating mHealth technology to assess and monitor daily family coping and family self-management behaviors during the discharge transition process. This training program lays the foundation to develop and test the intervention in a larger multicenter study amongst pediatric transplant centers and other complex pediatric chronic illness populations, as well as positions me to become an independent investigator and lead nurse scientist in family self-management of chronic conditions.