Solid Organ Transplant
Conditions
Keywords
pediatric, solid organ transplant, parents, heart, kidney, liver
Brief summary
The purpose of this study is to address a gap in knowledge needed for care of children with solid organ transplantation (SOT) and their parents by combining mHealth technology with an individualized family centered self-management intervention (referred to as myFAMI). This study is critical to the increased understanding of hospital to home transition and family management at home with the potential to transform the way clinicians approach the care of complex chronic illness children and families.
Interventions
BEHAVIORALmyFAMI iPad application
Sponsors
Children's National Research Institute
Medical College of Wisconsin
Study design
Allocation
RANDOMIZED
Intervention model
SINGLE_GROUP
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
SINGLE (Subject)
Eligibility
Sex/Gender
ALL
Age
18 Years to 90 Years
Healthy volunteers
No
Inclusion criteria
* parent's child has undergone a heart, kidney, or liver transplant and is being discharged home from the hospital * the parent is English speaking (to date the tools being used have been validated for English participants only) * parent is 18 years of age or older * patient is 17 years of age and younger.
Exclusion criteria
* presence of significant communication or cognitive impairment on the part of the parent that would preclude completion of questionnaires based on self-report * parent and child has experienced the discharge to home transition from a previous transplant.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Evaluate the effectiveness of myFAMI on 30-day post-discharge outcomes. | 30 days following enrollment | Hypothesis: Compared to parents who received standard discharge preparation (usual care), parents receiving myFAMI will report: i) Better care coordination, ii) Higher quality of discharge teaching, iii) Greater readiness for hospital discharge, iv) Improved post-discharge coping, v) Improved family functioning, vi) Better self-management of medication and treatment regimens vii) Fewer emergency department visits and hospital readmissions |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Examine the acceptability of myFAMI: | Enrollment plus 30 days | 2\. Examine the acceptability of myFAMI: The content of the interview will focus on strengths and weaknesses of iPad® technology in preparing parents for hospital discharge utilizing both survey and qualitative questions |
Countries
United States
Outcome results
None listed