Transplant Library

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.

CET Conclusion

Reviewer:	Dr Liset Pengel, Centre for Evidence in Transplantation, Nuffield Department of Surgical Sciences University of Oxford
Conclusion:	This is the protocol of a pilot study that aims to evaluate the feasibility and preliminary efficacy of a family self-management intervention. The myFAMI intervention facilitates and supports family management of the child and communication between the family and the health care team. Families of 40 paediatric heart, kidney and liver transplant recipients from three paediatric transplant centres will be randomised to myFAMI or control according to a table of random numbers. The control and intervention groups receive standard care. The myFAMI intervention includes using an app to promote daily communication for 30 days postdischarge. Family members are prompted to answer daily questions regarding coping, care at home and management of the transplant symptoms, e.g. pain or fever. Critical responses will trigger a call from the nurse. The study will report on myFAMI-app use (target completion rate of daily questions by family members is at least 80%), frequency of daily alerts and timing of nurse responses to these alerts, postdischarge coping according to the postdischarge coping difficulty scale, and the additional outcomes self-efficacy, self-management behaviour and quality of life. So far, 21 families have been randomised and the pilot study will continue until 40 families are recruited. The authors describe the challenges regarding study recruitment and procedures and lessons learned to date.

Reviewer:

Dr Liset Pengel, Centre for Evidence in Transplantation, Nuffield Department of Surgical Sciences University of Oxford

Conclusion:

This is the protocol of a pilot study that aims to evaluate the feasibility and preliminary efficacy of a family self-management intervention. The myFAMI intervention facilitates and supports family management of the child and communication between the family and the health care team. Families of 40 paediatric heart, kidney and liver transplant recipients from three paediatric transplant centres will be randomised to myFAMI or control according to a table of random numbers. The control and intervention groups receive standard care. The myFAMI intervention includes using an app to promote daily communication for 30 days postdischarge. Family members are prompted to answer daily questions regarding coping, care at home and management of the transplant symptoms, e.g. pain or fever. Critical responses will trigger a call from the nurse. The study will report on myFAMI-app use (target completion rate of daily questions by family members is at least 80%), frequency of daily alerts and timing of nurse responses to these alerts, postdischarge coping according to the postdischarge coping difficulty scale, and the additional outcomes self-efficacy, self-management behaviour and quality of life. So far, 21 families have been randomised and the pilot study will continue until 40 families are recruited. The authors describe the challenges regarding study recruitment and procedures and lessons learned to date.

Study Details

Aims:	To evaluate the feasibility and preliminary efficacy of the family self-management intervention called myFAMI.
Interventions:	A family self-management (myFAMI) intervention versus control. The myFAMI intervention includes an app to promote daily communication about coping, beliefs about complex care at home and managing the child’s transplant symptoms. Both interventions received standard care included educational material, medication teaching sheets and teaching by the transplant team before hospital discharge.
Participants:	40 families (2 family members per family) of paediatric heart, kidney and liver transplant recipients from three US paediatric transplant centres.
Outcomes:	myFAMI-app use, frequency of daily alerts and timing of nurse responses to these alerts, postdischarge coping according to the postdischarge coping difficulty scale. Other outcomes include self-efficacy, self-management behaviour and quality of life.
Follow Up:	30 days post hospital discharge

Metadata

Funding:	Non-industry funding
Publication type:	Randomised Controlled Trial
Organ:	Heart; Kidney; Liver; Various
Language:	English
Author email:	slerret@chw.org
MeSH terms:	Adaptation, Psychological; Adolescent; Adult; Aftercare; Child; Child, Preschool; Family; Female; Humans; Infant; Male; Middle Aged; Nurse-Patient Relations; Organ Transplantation; Pilot Projects; Self-Management; Telemedicine; Transplant Recipients; United States; mHealth; Pediatric; Transplant; Heart Transplantation; Kidney Transplantation; Liver Transplantation

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