Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families

Abstract

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, ( myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.

Acceptability of an mHealth Family Self-management Intervention (myFAMI) for Pediatric Transplantation Families: Qualitative Focus

“…This study involves an evaluation of the acceptability of an mHealth intervention (myFAMI) as experienced by the intervention family members participating in a randomized controlled trial comparing myFAMI with standard postdischarge follow-up care [ 24 ]. The main pilot study was a randomized controlled trial that evaluated the efficacy of myFAMI [ 24 ].…”

“…This study involves an evaluation of the acceptability of an mHealth intervention (myFAMI) as experienced by the intervention family members participating in a randomized controlled trial comparing myFAMI with standard postdischarge follow-up care [ 24 ]. The main pilot study was a randomized controlled trial that evaluated the efficacy of myFAMI [ 24 ]. The data for this report include qualitative data from family members who reported their experiences of participating in the mHealth intervention to discern strengths and uncover opportunities for improving the acceptability and outcomes of myFAMI.…”

“…Over a 17-month period, family units were enrolled at 4 major pediatric transplantation programs in the United States. Participants were deemed eligible to participate if they were (1) 18 years of age or older; (2) English speaking; and (3) had a child (<18 years of age) who received a heart, kidney, or liver transplantation with expected discharge to home from the hospital [ 24 ]. Likewise, family members were deemed ineligible to participate (1) if they had communication or cognitive impairment that limited their ability to complete the myFAMI questionnaires or (2) if the child had a prior transplantation that would minimize the potential for an experiential effect.…”

“…Our team has previously conducted a pilot study of the implementation of a family self-management intervention ( myFAMI ) for families of pediatric heart, kidney, or liver transplantation recipients [ 24 ]. The effectiveness of interventions is tied to successful implementation [ 25 ].…”

“…Acceptability was evident with high nurse response rate (99%, 133/134) to family member trigger alerts within 2 hours. Improvements in patient outcomes of postdischarge coping, family quality of life, self-efficacy, and utilization of health care resources were in the expected direction [ 24 ]. The purpose of this analysis was to explore acceptability of myFAMI through an in-depth analysis of family member experiences with the myFAMI intervention.…”