iParent2Parent Support Program for Kidney Transplant Parents
Recruiting in Palo Alto (17 mi)
Age: 18+
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: The Hospital for Sick Children
Disqualifiers: Non-English speaking
No Placebo Group
Trial Summary
What is the purpose of this trial?The iParent2Parent (iP2P) program is a new, innovative virtual mentorship program that will connect parents one-to-one with other parents of pediatric kidney transplant recipients who are trained to offer vital peer support and mentorship. Parents of children who received a kidney transplant at The Hospital for Sick Children will be invited to participate as mentors and mentees. The iP2P program can decrease feelings of isolation, improve mental health and have a long-term positive impact on patient health. This research will increase our understanding of one-to-one peer support and leverage eHealth technologies to improve the access to and acceptability of parent peer support interventions.
Do I need to stop my current medications to join the trial?
The trial information does not specify whether you need to stop taking your current medications.
What data supports the effectiveness of the iParent2Parent Support Program for Kidney Transplant Parents treatment?
The e-Powered Parents program, which is similar to the iParent2Parent Program, showed that online support programs can help parents manage stress and improve their ability to care for children with chronic kidney disease. This suggests that the iParent2Parent Program might also be effective in providing support and improving outcomes for parents of children with kidney transplants.
12345How is the iParent2Parent Support Program for Kidney Transplant Parents different from other treatments for kidney transplant care?
The iParent2Parent Support Program is unique because it focuses on providing online support and resources specifically for parents of children with kidney transplants, addressing their need for continuous information and stress management, unlike traditional medical treatments that focus solely on the patient.
13678Eligibility Criteria
This trial is for parents of children under 18 who had a kidney transplant at least two months ago, or under 21 if they're one year post-transplant. They need to speak English and have access to WhatsApp on a device. To be mentors, they must be recommended by their child's healthcare team.Inclusion Criteria
I am a parent of a child who had a kidney transplant over two months ago, have a device for WhatsApp, and speak English.
I am a parent of a child who had a kidney transplant over a year ago, nominated as a mentor, have access to WhatsApp, and speak English.
Exclusion Criteria
Non-English speaking.
Trial Timeline
Screening
Participants are screened for eligibility to participate in the trial
2-4 weeks
iParent2Parent Program
Participants engage in a virtual mentorship program connecting parents of pediatric kidney transplant recipients for peer support and mentorship
12 weeks
10 audio or video calls
Follow-up
Participants are monitored for outcomes such as parenting stress, coping, psychological distress, perceived social support, and family functioning
up to 1 year
Participant Groups
The iParent2Parent (iP2P) program is being tested. It's an online mentorship where parents of pediatric kidney transplant recipients give each other support. Participants are randomly chosen to either join iP2P or a control group without this peer support.
1Treatment groups
Experimental Treatment
Group I: iParent2Parent ProgramExperimental Treatment1 Intervention
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
The Hospital for Sick ChildrenToronto, Canada
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Who Is Running the Clinical Trial?
The Hospital for Sick ChildrenLead Sponsor
References
Effect and Process Evaluation of e-Powered Parents, a Web-Based Support Program for Parents of Children With a Chronic Kidney Disease: Feasibility Randomized Controlled Trial. [2019]Parents of children with chronic kidney disease (CKD) experience high levels of stress in the daily management of their child's illness. Parents need continuously available support and information, yet online support programs are lacking. e-Powered Parents was developed to fill this gap; it is an online program consisting of (1) medical information, (2) an interactive part, and (3) four training modules (stress management, setting limits, communication, and coping). Prior to a large-scale evaluation, we conducted a feasibility study that consisted of an effect study and a process evaluation.
Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC. [2021]Kidney transplantation increases life expectancy and improves quality of life for children with end-stage kidney disease, yet sequelae of transplantation and treatment make it difficult for transplant recipients to enjoy health and quality of life similar to their healthy peers. The NAPRTCS network was among the first to use multicenter data to inform improvements in care and outcomes for children with a kidney transplant through observational research. Now, with new technologies and unprecedented access to data, it is possible to create learning health systems as envisioned by the US National Academy of Sciences to seamlessly integrate research and continuous improvement of clinical care. In this review, we present two pre-eminent North American networks focused on using multicenter data to drive improved care and outcomes for children with a kidney transplant. Whereas, for the past 30 years NAPRTCS has focused on discovery of best practices through observational research and clinical trials, the Improving Renal Outcomes Collaborative, established in 2016, engages patients, families, clinicians, and researchers in redesigning the healthcare delivery system to enable practice change and continuous improvement of health outcomes. We discuss the history and past contributions of these networks, as well as current activities, barriers, and potential future solutions to more fully realize the vision of a true learning health system for pediatric kidney transplant recipients.
Collaborating to develop an online resource for parents. [2017]Background The development and evaluation of Online Parent Information and Support (OPIS) involved the creation of a web resource for parents who needed support for the home-based management of their child's chronic kidney disease (CKD).
[The Effects of an Empowerment Education Program for Kidney Transplantation Patients]. [2019]This study was conducted to develop an Empowerment Education Program (EEP) for kidney transplant patients and to test the program's effects on uncertainty, self-care ability, and compliance.
Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps? [2021]To assess parental understanding of idiopathic nephrotic syndrome (INS) and its management, to enable targeted education in areas of deficit.
On chain lengths, domino-paired and unbalanced altruistic kidney donations. [2010]Kidney transplantations with living related and unrelated donors are the optimal option for patients with end-stage renal disease. For patients with a willing--but blood-type or HLA incompatible donor--a living-donor kidney exchange program could be an opportunity. In Asia, the United States and Europe, kidney exchange programs were developed under different conditions, with different exchange algorithms, and with different match results. The easiest way to organize a living-donor kidney exchange program is to enlist national or regional cooperation, initiated by an independent organization that is already responsible for the allocation of deceased donor organs. For logistic reasons, the optimal maximum chain length should be three pairs. To optimize cross-match procedures a central laboratory is recommended. Anonymity between the matched pairs depends on the culture and logistics of the various countries. For incompatible donor-recipient pairs who have been unsuccessful in finding suitable matches in an exchange program, domino-paired kidney transplantations triggered by Good Samaritan donors is the next alternative. To expand transplantations with living donors, we advise integrating such a program into a national exchange program under supervision of an independent allocation authority. If no Good Samaritan donors are available, an unbalanced kidney paired-exchange program with compatible and incompatible pairs is another strategy that merits future development.
Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. [2022]Children diagnosed with chronic kidney disease (CKD) depend on their parents for complex, continuous and intensive support. The study aimed to explore the experiences of parents who have children with CKD.
Sources of Distress Experienced by Parents of Children with Chronic Kidney Disease on Dialysis: A Qualitative Systematic Review. [2022]Parents of children with chronic kidney disease face tremendous burdens of care, having to adopt dual roles as parents and informal healthcare providers, delivering home-based clinical care, despite lacking proper qualification and training.