Pilot study protocol of a mHealth self‐management intervention for family members of pediatric transplant recipients

Abstract

Solid‐organ transplantation is the treatment of choice for end‐stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child's medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self‐Management Theory and focuses on family self‐management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family–nurse communication and family self‐management behaviors for family members of pediatric transplant recipients.

Effectiveness of mobile health‐based self‐management application for posttransplant cares: A systematic review

“…The platform also enables the communication between patients and providers and includes a comprehensive tutorial library with custom video content and daily reports. Lerret et al 39 conducted a study based on the theory of individual and family self‐management and focused on the family self‐management of children transplant recipients at home. This pilot study performed a family self‐management intervention (myFAMI) using m‐Health technology to facilitate and support child family management and communication between family members and the healthcare team.…”

“… 7 , 28 , 29 , 30 , 40 Three studies used the PSSUQ or ASQ questionnaire for evaluation, 7 , 40 , 41 and the other studies used surveys and interviews. 32 , 39 …”

“…In this research, only two studies of children and adolescents were considered and parents were involved as an active component in the field of m‐Health. 7 , 39 …”

“…In this research, only two studies of children and adolescents were considered and parents were involved as an active component in the field of m-Health. 7,39 In addition, children and adolescents have many psychosocial con- Therefore, m-Health can be used to reduce psychosocial consequences and improve self-management skills. [46][47][48] Telemedicine is defined as "remote delivery of healthcare services over the telecommunication infrastructure."…”

An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study

“…The research project was initiated by a collaborative team of health care providers, pediatric nurses, and computer scientists. The myFAMI protocol is described in the protocol manuscript [ 34 ]. The features and functionalities of the developed myFAMI smartphone app and associated software framework are reviewed.…”