Editor’s note: As part of its strategy to increase transparency and give greater voice to patients and families, Children’s Healthcare of Atlanta launched a series of Family Advisory Councils (FAC),including diagnosis-specific programs as well as a system-level FAC. From these emerged a Family Mentor Program that partners experienced parents with families of children who have been newly diagnosed with the same disease. The impact of the program is detailed in this blog post and in their award nomination.
Helping your child deal with disease can be both frightening and challenging for parents and loved ones. However, by working in partnership with one another, families are gaining a sense of hope, support and empowerment. And that’s what the Family Mentor program at Children’s Healthcare of Atlanta is giving them. Our patient stories are filled with small but important triumphs.
Sharing Ideas that Work
Demetria, a Children’s Healthcare of Atlanta speech pathologist was working with a four-year-old boy who was diagnosed with “feeding difficulties.”. His mom was concerned and searched for answers. Demetria, who is one of our Family Mentor Program Liaisons, thought it may be beneficial for the mom to talk to another mom whose child has similar challenges and is progressing well. This partnership became a weekly conversation. During one of their talks, the topic of eating veggie sticks came up. The new mom asked Demetria what she thought, and she said, “Go for it.” It was a miracle, the child loved them.
Outcome: The mom receiving the phone calls decided they were so helpful that she completed the application process and is now a mentor in the feeding difficulties program.
Opening the Door to Support
One of our social workers met with a 17-year-old mom whose child was recently born with Cystic Fibrosis (CF). The mother was overwhelmed due to many variables in her life. She met with the social worker but did not share the details of her story. The social worker was one of our Family Mentor Program Liaisons and mentioned the possibility of talking with another mom. The mentor was in her fifties and was very successful with raising her 14-year-old child with CF. The young mom opened up to her mentor so much so that the two had to review boundaries.
Outcome: The veteran mom heard so much about the situation, she asked if she could share with the social worker. Then, multiple resources became available to the 17-year-old mom and child.
The Family Mentor Program has been formally in existence for five years. However, prior to its implementation, the Family Mentor Program Committee met once each month. We had assignments to research best practice. We created our operational guidelines, mentor training, mentor resource book and program evaluations. One operation guideline that we maintain is any area/diagnosis that wants a Children’s Healthcare of Atlanta Family Mentor Program must have a Family Mentor Staff Liaison who sits on the committee. The committee continues to meet two times a year for program evaluation.
Download a copy of the program brochure here.
- It is preferred for the Family Mentor Liaison to be a frontline clinician rather than in a supervisory role. This presents issues: the manager has flexibility but no family contacts, the clinician has access to potential mentors/mentees but minimal time.
- We had mentor training twice each year. Initially, this worked. Now we train one-on-one when the need arises.
- Maintain ongoing “check ins” with mentors, and review mentor boundaries.
- Mentors need to keep a notebook of phone conversations in order to help recall where they left off.
- Assess using the word, “mentor,” when discussing with family in need. Sometimes the word, can conjure up a negative for family. “Why do I need a mentor?”