Children’s Mercy is one of the largest pediatric hospitals in the Midwest. Located in downtown Kansas City, Missouri, it is a thriving hospital that is constantly changing and growing to meet the unique needs of the continuously expanding population of Kansas City and the surrounding area. Patients come to Children’s Mercy not only for the routine bumps and bruises of childhood, but also for the specialists who are advancing medicine every day.
 

The Division of Hematology/Oncology/Bone Marrow Transplant is nationally ranked in U.S. News and World Report, treating close to 200 new oncology patients each year as well as patients in specialized programs for sickle cell disease, hemophilia, Survive and Thrive (cancer survivorship), blood disorders, plus a Spanish-speaking clinic for patients.

“Psychosocial Care for Parents of Children with Cancer” and “Bereavement Support for Families” are two of the 15 accepted standards of the newly adopted Psychosocial Standards of Care for Children with Pediatric Cancer (Weiner, Kazak, Noll, Patenaude, & Kupst 2015). At Children’s Mercy, many services are offered to support the families of patients receiving care in the Hematology/Oncology/Bone Marrow Transplant Division through the Parent-to-Parent Program. This program was developed in 1990 from a small grant to offer parent-to-parent support at diagnosis, relapse and bereavement. Parents can choose to be assigned a parent mentor at any time during the journey through cancer. These trained parent mentors are available to share, listen and support parents who have children currently undergoing treatment.

In addition, while children are in the hospital, there are two parent rooms stocked with food and laundry services, weekly meals, and therapeutic and educational activities as well as a safe place to unwind. New families and those who are admitted unexpectedly receive “care bags” to help ease the burden of a hospital stay. They also receive a new diagnosis journal that has a welcome letter, a page of frequently asked questions and blank pages to start journaling. As well, they receive invitations to weekly groups, including parent dinners. There are bulletin boards full of pertinent psychosocial information and semi-annual “spa days” for caregivers on the inpatient unit, as well as various other activities throughout the year. Last year, more than 2,000 meals were served to families during their inpatient stay and move than 500 hours of volunteer time were spent supporting parents and caregivers in the Parent Room.
 

Bereavement Support and the Use of Social Media

“How am I supposed to respond when someone asks me how many kids I have?”

“It’s been three years and I still cannot take a deep breath.”

Pediatric cancer is the leading cause of death by disease past infancy among children in the United States (Siegel, Miller, and Jemal, 2017). In 2017, it was estimated that more than 15,000 children and adolescents were diagnosed with cancer in the United States (Siegel et al.). We know the significant grief and sadness these families experience. Our Parent-to-Parent (PTP) Bereavement Program is designed to continue the support for families after the death of their child. The program’s main component utilizes parent volunteers who have had a child die at least two years prior. These mentors are assigned to the newly grieving families for a critical 13 months after the death of their child. The PTP Program Coordinator mails out a book on grief and an initial invitation letter explaining the program, which offers an “opt in” option and a postcard to return. The mentor volunteers then receive their assignments complete with the mailing series that is to be sent at 30 days, three months, six months, nine months, 11 months, 13 months, holidays and a special mailing to address kids and sibling grief. Our dedicated volunteers are able to reach out to our newly bereaved parents and walk with them during their grief. They accept each new family with the grace and compassion that can only be offered by someone who has walked this grief journey before. Our volunteers are able to use the knowledge they have gained through their own loss to support and encourage others. They are truly some of the unsung heroes of our hospital.

For years, we offered support groups that were well attended. However, as many of us have experienced, support group attendance has declined in recent years. It’s difficult to hold on to your grief until 6 p.m. on a Tuesday once a month. Grief is not linear. Grief hits when it is least expected—on the way to work, when accidentally passing the same exit as the hospital, while listening to a song on the radio or having to offer congrats to one of your child’s best friends on graduation day.

For our grief support program, gone are the days of potluck dinner grief groups as we usher in the days of social media, constant connection and immediate access. With this, we have seen many benefits. Through social media, doors have been opened to allow us to continue to grow our program and offer support via a safe, online 24/7 Facebook page. Two licensed social workers monitor the page and offer weekly postings. The soul of the group, however, is the support parents can gain from each other, and it has remained true to its intended purpose. As one parent expressed, “Thank you for setting up this Facebook page where we can all share our thoughts and emotions. I have read your posts and cried with you, because I have a small idea of what you are feeling. I know that my child is up there with each of your children celebrating a life cancer free!”

One of my favorite quotes by Elizabeth Andrews truly sums up the spirit of our program, “Volunteers do not necessarily have the time, they have the heart.” The Children’s Mercy Hem/Onc/BMT Parent-to-Parent Program has some of the best volunteers with the biggest hearts around. We continue to walk with our grieving caregivers and help lead families into the transition to their “new normal” after a life-altering diagnosis.

References

Siegel, R.L., Miller, K.D., & Jemal, A. Cancer Statistics, 2017. CA: A Cancer Journal for Clinicians, 67, 7-30.

Wiener, L., Kazak, A. E., Noll, R. B., Patenaude, A. F., & Kupst, M. J. (2015). Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue. Pediatric Blood Cancer, 62, S419–S424. doi: 10.1002/pbc.25675