Institute for Patient- and Family-Centered Care
Transforming health care through partnerships

Riley Hospital for Children at Indiana University Health

Riley Hospital for Children at Indiana University Health

Riley Hospital for Children at Indiana University Health is Indiana's only comprehensive children's hospital. Riley provides inpatient and outpatient care to more than 300,000 children each year. Riley serves as a teaching site for Indiana University School of Medicine, and many of Riley's physicians are faculty members.

Riley was one of the first hospitals to embrace patient- and family-centered care, treating patients and families as partners in care, building a cadre of family advisors, and encouraging family presence. Riley is proud of being a nationally ranked hospital, and has achieved Magnet Status. Patients come to Riley from throughout the state, the country, and the world.

Within the overall Family Advisor program, Riley Hospital for Children has several parent to-parent mentor groups serving, for example, the Neonatal Intensive Care Unit, the Heart Center, and the Gastrointestinal Department. The Inflammatory Bowel Disease (IBD) parent mentor program is highlighted in this profile.

Structure

Peer mentors in the IBD clinic report to a physician and a research nurse in the IBD clinic.

The early parent mentors learned about the Riley Family Advisors and broadened their activities beyond mentoring other parents to also securing funding for pain relief measures and distraction kits for IBD patients. As the parent volunteers' interest expanded, they decided to create an advisory program called IBD Parent Partners.

Working with physicians and nurses, the IBD Parent Partners group meets monthly, participating in research, identifying and implementing new programs and raising money to support them, and recruiting new advisors. Some new advisors will become also become mentors. As ongoing professional development, mentors have the opportunity to participate in quarterly webinars.

All mentor programs, including the IBD mentor program are coordinated by Darla Cohen-a full time, salaried employee. Other than funding Darla's position, there is no operating budget or parent-to-parent mentor budget. The administration budget provides some administrative support, as do some foundation grants and donations.

Coordination

The Riley Irritable Bowel Disease Parent Mentor Group is the most recently formed parent mentor group. These parents have children with Inflammatory Bowel Disease (IBD) and know firsthand how, when a child is diagnosed, families receive an overwhelming amount of information about symptoms, medications, tests, and medical terminology. The goal of the IBD Parent Mentor Group is to be a resource for both the families dealing with IBD and the doctors and staff who care for them. The parents have years of experience with the disease, treatment decision-making, hospitalization, surgery, transition to adult care, and national IBD resources.

The initial funding for the three lead IBD Parent Mentors came from a grant to write and produce a resource manual for newly diagnosed patients and families. The resulting manual includes information that the veteran parents would have found helpful when their children were diagnosed. The manual includes an invitation to be contacted by a parent mentor. Physicians and nurses present the manual to the patient's family at initial diagnosis. Families keep the manual as a resource and may accept or reject the offer of a mentor. If a family accepts the offer to speak to another parent, either their physician or the Parent Mentor Group will assign a mentor. The mentor will contact the family within 24-48 hours by phone or email. The frequency of contacts and the length of the mentoring relationship vary according to the needs and interests of each family.

The lead mentors may invite family members to be new mentors. Each new mentor is given the IBD Mentor Handbook, and is trained using a comprehensive curriculum tailored specifically for IBD mentors and supportive of hospital policy. Topics include what is appropriate to say and when, how to handle sticky situations, how to start the interaction with families, and where to go if more support is needed. All contacts with families are tracked, and mentored families are asked to provide feedback to facilitate ongoing improvements in the program.

Since the IBD Parent Mentor program's inception in 2012, it has expanded to include more mentors, commenced plans for a website, and now has a presence in the IBD clinics so mentors are available-in person-for families interested in speaking with another parent. Recently, the IBD Parent Mentors received a grant to purchase "Buzzy" kits for all IBD patients to manage the pain associated with repeated needle sticks and infusion treatments.

Darla Cohen
Coordinator Patient- and Family-Centered Care
Program Coordinator Patient Experience
Riley Hospital for Children at Indiana University Health
dcohen@iuhealth.org
317.948-1613