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Around 1800 pediatric transplantations were performed in 2021, which is approximately 5% of the annual rate of solid organ transplantations carried out in the United States. Effective family self-management in the transition from hospital to home-based recovery promotes successful outcomes of transplantation. The use of mHealth to deliver self-management interventions is a strategy that can be used to support family self-management for transplantation recipients and their families.
The study aims to evaluate the acceptability of an mHealth intervention (myFAMI) that combined use of a smartphone app with triggered nurse communication with family members of pediatric transplantation recipients.
This is a secondary analysis of qualitative data from family members who received the myFAMI intervention within a larger randomized controlled trial. Eligible participants used the app in the 30-day time frame after discharge and participated in a 30-day postdischarge telephone interview. Content analysis was used to generate themes.
A total of 4 key themes were identified: (1) general acceptance, (2) positive interactions, (3) home management after hospital discharge, and (4) opportunities for improvement.
Acceptability of the intervention was high. Family members rated the smartphone application as easy to use. myFAMI allowed the opportunity for families to feel connected to and engage with the medical team while in their home environment. Family members valued and appreciated ongoing support and education specifically in this first 30 days after their child’s hospital discharge and many felt it contributed positively to the management of their child’s medical needs at home. Family members provided recommendations for future refinement of the app and some suggested that a longer follow-up period would be beneficial. The development and refinement of mHealth care delivery strategies hold potential for improving outcomes for solid organ transplantation patients and their families and as a model to consider in other chronic illness populations.
ClinicalTrials.gov NCT03533049; https://clinicaltrials.gov/ct2/show/NCT03533049
Around 1800 pediatric transplantations were performed in 2021, which is approximately 5% of the annual rate of solid organ transplantations carried out in the United States [
Successful outcomes of transplantation require effective family self-management [
The use of mobile health (mHealth) technology, particularly to deliver self-management interventions, is a strategy that can be used to support family self-management for transplantation recipients [
The innovative use of mHealth emphasizes the importance of an interactive partnership between families and nurses [
Our team has previously conducted a pilot study of the implementation of a family self-management intervention (
The mHealth intervention, myFAMI, included the use of a smartphone app and nurse response (video or telephone) to support family self-management for family members after their child’s transplantation. myFAMI promoted daily communication initiated by an in-app notification and completed by the participating family member for 30 days after discharge. Specifically, family members received an in-app notification at 8:00 AM reminding them to answer the 8 daily questions within 2 hours (ie, by 10 AM); 5 of the 8 questions were symptom-based (fever, vomiting, diarrhea, pain, other illness) and 3 were self-management–based (coping, medication administration, and medical appointments). Preidentified triggers for each question resulted in an alert to the research nurse who subsequently contacted the family to discuss any of the symptom(s) and self-management issues within 2 hours of receiving the alert. The preidentified triggers were defined as follows: (1) an answer of “yes” or “don’t know” for the 5 symptom-based questions and (2) an answer of 3 or greater using a scale of “0” (no difficulty) to “10” (great difficulty) for the self-management questions.
Summary of the myFAMI app workflow.
myFAMI app screenshot displaying one of the symptom-based survey questions.
App screenshot displaying one of the self-management–based survey questions.
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 [
A convenience sample of family units of pediatric heart, kidney, and liver transplantation recipients was enrolled. For this report, a family unit is defined as one of the following: (1) a primary family member only or (2) a primary and secondary family member. This may include a variety of family unit combinations such as mother/father, mother/aunt, father/grandmother, mother/grandmother. 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 [
After receiving institutional review board approval at each of the 4 study sites, eligible family members and their child were identified and approached for voluntary participation and informed consent/assent was obtained. On the day of hospital discharge, family units were randomized to the control or intervention (myFAMI) group.
The qualitative data used for this analysis were provided by family members who were assigned to the myFAMI app and participated in a 30-day postdischarge telephone interview. One component of the telephone interview consisted of open-ended questions focused on the overall experience of using the app (
Qualitative questions in the 30-day follow-up interview.
Description | Questions |
Challenges |
Tell me about any challenges you had with using the app? Technical challenges with the app itself maybe something we can improve for future use. |
Functionality |
Tell me if you feel the app helped you after discharge? Helped you to manage your child at home? How much time did it take you to complete the app every day? Did the time spent with the app seem too long, too short, or just right? |
Overall experience |
Can you tell me more about your experience with using the app? Did you think it was easy or hard to use? Why? |
Use of the app |
Did you answer the app every day for 30 days? If not, what were some of the reasons why you did not complete the app? (ie, technical problems with the app or app did not work, forgot that day) |
Call experience |
Did you receive a call from the research nurse? If yes, what went well? What did not go well? |
Recommendations |
What recommendations do you have for improving the app? Would you recommend using the app for other families? |
This qualitative approach was guided by content analysis, a systematic and rigorous means of describing the family member experience [
The study was approved by the Institutional Review Board at the Children’s Hospital of Wisconsin (IRB approval number 1183697) and at each individual enrolling transplantation center.
A total of 21 family units (primary family member only or primary and secondary family members of the transplanted child) had 30-day postdischarge interview data available for analysis. The final sample consisted of 32 primary and secondary family members. The majority of this sample comprised family members of children who received liver transplantations (13/21, 62%). An overwhelming majority of the children (20/21, 95%) and family members (30/32, 94%) were White. The child age spanned from infant to adolescent (range 30 days to 17 years). The age range for family members was 25-63 years. Additional demographic data are listed in
Demographics.
Characteristics | Values | ||
Family member age (n=32), years, median (IQR) | 36.5 (32-46) | ||
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Female | 20 (62) | |
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Male | 12 (38) | |
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White | 30 (94) | |
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Asian | 2 (6) | |
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Married | 24 (75) | |
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Single | 8 (25) | |
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Mother | 18 (56) | |
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Father | 11 (34) | |
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Grandmother | 1 (3) | |
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Other | 2 (6) | |
Child age (n=21), years, median (IQR) | 8 (3-10.5) | ||
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Female | 10 (48) | |
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Male | 11 (52) | |
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White | 20 (95) | |
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Asian | 1 (5) | |
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Heart | 6 (29) | |
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Kidney | 2 (10) | |
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Liver | 13 (61) |
In the 30-day follow-up interview, nearly all participants (31/32, 97%) reported that the app was easy to use. In discussing certain features, 41% of family members (13/32) specifically mentioned that design features made the app easy to use. Question setup and phrasing were mentioned as a good part of the app design (4/32, 13%). One participant mentioned liking the pictures that were added with the questions, while 3 participants stated the notifications/reminders to complete the survey were good features. For example, a participant stated, “It sent notifications; reminders were helpful; simple and easy to use”. Another parent stated, “Easy to use, being able to click yes or no”. When asked about time spent with the app, the majority of family members (29/32, 91%) said it took 2 minutes or less to complete the app daily, and that time spent in the app was “just right.”
Family members who did not complete the app every day reported various reasons for missing days, including that they forgot (2/32, 6%), were away from the child (1/32, 3%), or were not sure (2/32, 6%). One parent stated, “2 or 3 times I wasn’t able to answer, days I may have gone home and wasn’t next to him [child], didn’t want to provide inaccurate information”. One other family member stated, “I believe I missed one day, can’t remember why”.
When asked about their experience with the app, family members indicated high levels of general acceptance, with 88% (28/32) recommending use of the app for future candidates. Supporting the theme of acceptance, a family member reported, “Yes [they would recommend it to other families], great to have the psychological safety net”, while another reported that they “highly recommend [use of the app]”. One family member did not recommend the app without explanation and another said s/he would recommend the app clarifying that “would recommend if it [the app] was geared towards helping people understand symptoms of infection and rejection”.
Overall, among the 32 participating primary and secondary family members, 163 triggers were generated based on answers provided in the app. When a trigger alert was generated, the family member received a call from the research nurse to discuss reason for the alert. The nurses responded to 99.3% (162/163) of the trigger alerts within 2 hours. In all, 23/32 (72%) family members who were interviewed reported receiving a call from the research nurse; 21/23 (91%) of these family members stated that the calls with the research nurse were positive interactions (
Themes and exemplar family member quotes.
Theme/category | Family member response |
General Acceptance |
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Positive Interactions (with the research nurse) |
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Home Management: Helped Manage After Discharge |
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Opportunities for Improvement |
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The majority of participants (23/32, 72%) stated that the app allowed them to better manage their child’s medical-related care after hospital discharge. The family members noted that the app helped them to be aware of symptoms and monitor the child for rejection. They specifically identified the value of access to the nurse for managing problems and resolving difficulties with their child’s treatments. The app and response by the nurse provided support, reassurance, and help with managing emotions, as one participant stated, “if I put in an illness the nurse called, it helped me manage” and another participant stated, “it helped me focus on getting him [child] better”. As many as 5 participants (16%) reported that the app did not help in managing the child (ie, “not really” or “didn’t add much value”). Specifically, 1 family member stated, “Not really manage, more of an assist”.
Although there were high levels of general acceptance, 25% of participants (8/32) also reported challenges, most frequently (4/8) technology-related challenges. Specifically, 1 participant stated, “In the beginning, the app didn’t work well on the phone; a study team member helped to get it working”. Two other participants reported feeling uncertain while using the app. For example, 1 participant stated, “When it talked about bowel movements, I’d question whether I should say ‘yes’ or ‘no’; if it changed a little, I wasn’t sure how to record”. Two participants stated that their only challenge was remembering to do the daily questions. One family member said, “No challenges other than remembering to complete it at times” and another parent stated, “the biggest challenge was remembering to complete it”.
In considering potential challenges, themes emerged from participant responses regarding recommendations to improve the app. In this, a few themes regarding ideas for improvement developed. First, 5 of the 32 family members recommended having the questions presented in a different order each day and with varying pictures. One participant supported this theme by stating, “switch up some of the questions.” Second, 4 participants recommended adding a space for extended feedback within the daily survey, that is, “Suggest adding a comments option. More chances for feedback...”. Four others recommended having more flexibility in calls with nurses. For example, “... the ability to leave a time to call back”. Lastly, 2 participants indicated that extending the use of the survey beyond 30 days would be beneficial, making a suggestion for, “longer, maybe out to the three-month mark”.
The use of mHealth is an innovative approach that complements medical management for supporting the transition from hospital to home-based family self-management for medically complex children. This study aimed to understand parent perspectives and acceptability of a family self-management intervention (myFAMI) for the first 30 days after the child’s heart, kidney, or liver transplantation. It was important to learn the family perspective on acceptability of myFAMI to more fully understand how to further improve this mHealth app to promote successful family self-management during this high-acuity time [
Family members reported overwhelmingly positive perceptions of acceptability of the app. The high acceptability for an mHealth smartphone intervention has been similarly reported by adult liver transplantation recipients who stated that an app would help with their transplantation recovery [
Family members reported appreciation for the positive interactions during direct conversations with the nurse (video or telephone) in response to triggers from the app, describing the nurses as knowledgeable and supportive. Adolescent heart, liver, and kidney transplantation recipients reported similar benefit to participating in an mHealth SMS text messaging intervention. More specifically, the adolescents reported appreciation for receiving SMS text messages and knowing someone is checking in as enhancing their health care experience [
myFAMI is an individualized family self-management intervention that leveraged mHealth to facilitate timely and effective patient-nurse communication [
Families valued the support from medical experts in addition to their primary transplantation team. Parents of transplanted children reported that they were worried about complications, documented stress and worry in the first 3 weeks after hospital discharge, and indicated that support from the medical team had a positive influence on their ability to cope [
Recommendations for improvement to the app were functional and included extending the time frame for communication beyond 30 days following discharge. The 30-day time frame for this study was chosen based on hospital quality indicators for readmission [
Study limitations exist. The study questions focused on the experience with and acceptability of myFAMI and did not address other opportunities for support or identify other family member needs. Non-English speaking families were excluded in this pilot study and future research with this population is indicated. The racial breakdown of the myFAMI group was predominantly White, indicating a clear lack of racial diversity. Future research can target diverse populations to identify racial or ethnic disparities experienced after transplantation and unique opportunities to support family self-management [
A strength of this study was identifying the family experience for different family structures including mom/aunt, mom/dad, and mom/grandmother. While the sample size was small and limited robust statistical analyses, it was sufficient to reach saturation with commonality reported by family member experiences. However, future studies would benefit from larger samples sizes that would allow for differentiation of the unique perspectives of each type of family member.
This is the first study to qualitatively explore family member perceptions on the acceptability of a family self-management intervention for family members of pediatric heart, kidney, or liver transplantation recipients. Family members value and appreciate ongoing support and education specifically in the first 30 days after their child’s hospital discharge. myFAMI allowed for the opportunity for families to feel connected to the medical team while in their home environment. A fully powered clinical trial to determine outcomes of myFAMI is indicated to extend the knowledge for use of mHealth to promote successful family self-management. The use of mHealth in a transitional care delivery model that also includes nurse-patient interaction initiated through the mHealth app may be an effective way to improve overall outcomes for solid organ transplantation patients and their families and a model to consider in other chronic illness populations.
mobile health
We thank members of the mentoring team, Drs Medoff-Cooper, Ahamed, and Simpson, who provided support and guidance during the development and conduct of this study. We also thank the following individuals for their important role in the conduct of this study: Riddhiman Adib, Melodee Liegl, Jeff Crawford, Katie Neighbors, Mary Riordan, Melissa Semp, Truc Vo, Gail Stendahl, Shelley Chapman, and Rachel Unteutsch. An additional thank you to Drs Kindel, Pan, and Telega, for their support of this research project. Finally, we thank Dr Marianne Weiss for her ongoing support and guidance. Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number K23NR017652.
None declared.