iParent2Parent Support Program for Kidney Transplant Parents

Overseen By Sophie Bui, BHSc

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: The Hospital for Sick Children

Disqualifiers: Non-English speaking

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 10

55 Participants Needed

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. ^{1 2 3 4 5}

How 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. ^{1 3 6 7 8}

Research Team

Samantha J Anthony, PhD

Principal Investigator

The Hospital for Sick Children

Eligibility 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 a year ago, nominated as a mentor, have access to WhatsApp, and speak English.

Exclusion Criteria

Non-English speaking.

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

Treatment Details

Interventions

• iParent2Parent Program

Trial Overview 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.

Participant Groups

Group I: iParent2Parent Program Experimental Treatment 1 Intervention

Who Is Running the Clinical Trial?

The Hospital for Sick Children

Lead Sponsor

Trials

724

Recruited

6,969,000+

Findings from Research

A feasibility study involving 146 parents of children with chronic kidney disease tested the e-Powered Parents online support program, but no significant effects were found on parental stress, fatigue, or communication efficacy after 6 months and 1.5 years.

Despite 84% of parents accessing the program's information and interactive components, overall engagement with the training modules was low, suggesting that a more tailored approach may be necessary for effective support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

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. Geense, WW., van Gaal, BG., Knoll, JL., et al.[2019]

Kidney transplantation significantly enhances life expectancy and quality of life for children with end-stage kidney disease, but ongoing challenges from treatment and transplantation sequelae can hinder their overall health compared to healthy peers.

The NAPRTCS network has been pivotal in using multicenter data to improve care for pediatric kidney transplant recipients, while the newer Improving Renal Outcomes Collaborative focuses on engaging stakeholders to redesign healthcare delivery for better health outcomes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC. Hooper, DK., Misurac, J., Blydt-Hansen, T., et al.[2021]

The Online Parent Information and Support (OPIS) resource was developed to assist parents in managing their child's chronic kidney disease (CKD) at home, addressing a critical need for support.

This web resource aims to provide valuable information and guidance, helping parents navigate the challenges associated with their child's CKD management.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Collaborating to develop an online resource for parents. Smith, T., Swallow, V., Stephenson, M.[2017]

The Empowerment Education Program (EEP) significantly reduced uncertainty in kidney transplant patients, with improvements observed immediately after the program and four weeks later, indicating lasting effects.

Patients who participated in the EEP also showed significant increases in self-care ability and compliance with treatment, suggesting that the program effectively supports their health management post-transplant.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[The Effects of an Empowerment Education Program for Kidney Transplantation Patients]. Kim, SH., You, HS.[2019]

Despite 90% of parents believing they understood idiopathic nephrotic syndrome (INS), only 29% could accurately define a relapse and 24% could name potential complications, indicating a gap in true understanding.

Management of INS was generally effective, with 81% of parents testing urine correctly and 90% managing relapses well, but 57% imposed unnecessary dietary restrictions during remission, highlighting the need for better education and support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps? Lo Cao, E., Amir, N., McKay, A., et al.[2021]

Living-donor kidney exchange programs can provide a solution for patients with incompatible donors, and these programs have been successfully implemented in various regions with different matching algorithms and results.

To enhance the effectiveness of these programs, it is recommended to establish national or regional cooperation, limit exchange chains to a maximum of three pairs for logistical efficiency, and utilize a central laboratory for cross-match procedures.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

On chain lengths, domino-paired and unbalanced altruistic kidney donations. de Klerk, M., Zuidema, WC., Ijzermans, JN., et al.[2010]

Parents of children with chronic kidney disease (CKD) experience significant emotional and practical challenges, including trauma from medical procedures and feelings of disempowerment in navigating the healthcare system, as revealed through in-depth interviews with 20 parents.

The study highlights the need for improved support structures for these parents, as they often feel overwhelmed by their dual roles as caregivers and parents, and they benefit from connecting with other parents facing similar challenges.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. Tong, A., Lowe, A., Sainsbury, P., et al.[2022]

Parents of children with chronic kidney disease undergoing dialysis experience significant distress due to multiple factors, including the demands of caregiving and lack of resources, as identified in a systematic review of 13 qualitative studies involving 183 parents.

Healthcare professionals should proactively screen these parents for distress and connect them with psychosocial and community support services to help alleviate their burdens.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Sources of Distress Experienced by Parents of Children with Chronic Kidney Disease on Dialysis: A Qualitative Systematic Review. Ong, ZH., Ng, CH., Tok, PL., et al.[2022]

References

1. Canada pubmed.ncbi.nlm.nih.gov

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]

2. Denmark pubmed.ncbi.nlm.nih.gov

Multicenter data to improve health for pediatric renal transplant recipients in North America: Complementary approaches of NAPRTCS and IROC. [2021]

3. England pubmed.ncbi.nlm.nih.gov

Collaborating to develop an online resource for parents. [2017]

4. Korea (South) pubmed.ncbi.nlm.nih.gov

[The Effects of an Empowerment Education Program for Kidney Transplantation Patients]. [2019]

5. Norway pubmed.ncbi.nlm.nih.gov

Parental understanding of relapsing idiopathic nephrotic syndrome-Where are the knowledge gaps? [2021]

6. United States pubmed.ncbi.nlm.nih.gov

On chain lengths, domino-paired and unbalanced altruistic kidney donations. [2010]

7. England pubmed.ncbi.nlm.nih.gov

Parental perspectives on caring for a child with chronic kidney disease: an in-depth interview study. [2022]

8. United States pubmed.ncbi.nlm.nih.gov

Sources of Distress Experienced by Parents of Children with Chronic Kidney Disease on Dialysis: A Qualitative Systematic Review. [2022]