# mHealth Family Self-management Intervention for Parents of Transplanted Children

> **NIH NIH K23** · MEDICAL COLLEGE OF WISCONSIN · 2020 · $123,764

## Abstract

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 transpl...

## Key facts

- **NIH application ID:** 9906955
- **Project number:** 5K23NR017652-03
- **Recipient organization:** MEDICAL COLLEGE OF WISCONSIN
- **Principal Investigator:** Stacee M Lerret
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $123,764
- **Award type:** 5
- **Project period:** 2018-05-23 → 2021-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9906955

## Citation

> US National Institutes of Health, RePORTER application 9906955, mHealth Family Self-management Intervention for Parents of Transplanted Children (5K23NR017652-03). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/9906955. Licensed CC0.

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