New Parent Mentor Program By Jill Brown, MPA Executive Director of NW Kidney Kids
I often think back to when my daughter emerged from a severe illness with a diagnosis of chronic kidney disease. After being on dialysis for 9 weeks we had a reprieve from dialysis and thoughts of transplant for 8 months. We didn’t at that time know how long it would be. As she resumed dialysis and we started thinking about transplants there were so many questions going through our minds. How will her life be different after the transplant? What is the risk? How is the recovery? What will be the restrictions? We had met a few people via an online Facebook group for kidney families where questions could be asked of others who have gone through a similar journey. The biggest support was another mom who had a son on dialysis going through the transplant process. We donated our own kidneys 6 months apart to our kids. After that, we attended NW Kidney Kids summer camp and met so many other families going through the journey. All at various stages and we gleaned information from them and their experiences.
As NW Kidney Kids has grown, the continued question of how we meet parents' and families' needs continues to be a top priority. A board member, Dr. Aaron Bayne, brought up the need for a newly diagnosed program. That’s when families find themselves in the NICU/PICU with a child going on dialysis, looking at transplant they often wonder “is there another family we can talk to?” We were fortunate to have Alex Baker, a long-time volunteer, and Assistant Camp Director, working on her Doctorate of Nursing Practitioner wanting to do her project with us. This project created a New Parent Mentor Program. Alex did the hard work. She researched best practices, came up with models, evaluation criteria, trained new parents and created an algorithm to match parents, and then managed the pilot. Our pilot program last spring was a huge success. Alex noted in her Executive Summary that parents coping abilities of their child diagnosis significantly increased overall by participating in the program over the 8 week period. The mentors that signed up were 100% willing to mentor again and their own coping significantly improved. CKD/ESRD is a lifelong disease. Families are continuing to manage their child's disease and diagnosis change.
If you are a family with a child with a new diagnosis of CKD or a change in diagnosis in the past one to six months and you would like to enroll in the next cohort we are enrolling now. Please use this form. Some things that can qualify you are: New CKD 3, CKD 4, ESRD Your child started or change dialysis Your child is going through Kidney Transplant Your child is going through rejection of kidney transplant Or something else
If you are a parent of a child who is at least two years from one of the situations aboves and feel like you are in the place to mentor another parent, please consider joining as a Parent Mentor. You can also use this form.
Parent Mentors are asked to attend training and reach out to their mentee once a week for 8 weeks. Pre/Post surveys. We will continue to have ongoing cohorts and you can choose to continue or take a break.
Take a listen to our Podcast, "Let's Talk About Kidney Kids"