Teddy bears are provided to all children attending the Pediatric Evening of Remembrance, generously donated by Trudi Bears

Redesigning the Pediatric Evening of Remembrances

ACLP Bulletin | Winter 2019 | VOL. 37 NO. 1

Teresa McGinley, MA, CCLS
Yale New Haven Children's Hospital, New Haven, CT

Losing a child is surely one of the most difficult experiences a child life specialist will support a family through in the hospital environment. This intense, emotional experience does not end when the family walks out of the hospital doors. Rather, the family’s grief is ongoing, and their relationship with the hospital and its staff may continue as well. After having spent significant time working with a child or family, child life specialists may find themselves wondering how the family is processing their grief or may feel emotional themselves regarding the loss.

At Yale New Haven Children’s Hospital, the child life department has a special role in providing ongoing bereavement and emotional support to families through the hospital’s Annual Pediatric Evening of Remembrance. The hospital’s interdisciplinary Evening of Remembrance Planning Committee is led by a child life specialist and consists of staff members from the child life, social work, spiritual care, patient relations, nursing, family resource, and language services departments.

In previous years, the format of the evening included a sit-down ceremony, during which parents and staff members gave speeches, performed readings and recited poetry, and children's names were read aloud. Siblings who attended went to a separate room outside of the auditorium and spent time engaging in play with child life specialists and hospital volunteers. The redesign of the Pediatric Evening of Remembrance event was prompted by direct feedback provided by staff and families stating that the event was somber and did not lend itself to siblings being present. In addition, it was discovered that staff members were discouraging families from bringing siblings to the event based on their experience with the old format. In discussions of redesign, one goal was paramount: ensuring that the event was appropriate for and beneficial to adults and children alike. Ideas for the new format modeled child life bereavement support interventions, which are often targeted for both caregivers and siblings. In addition, the aim was for families to remain together throughout the evening and to create a sense of community between the different families attending the event.

The event now begins with one hour of interactive, therapeutic activity stations for both adults and children to participate in together. The committee drew on the expertise of the Certified Child Life Specialists, art therapists, and music therapists employed at Yale New Haven to develop family-friendly activities simple enough for siblings to complete, with accompanying layers of meaningful, therapeutic dialogue for the adult family members in attendance to participate in. The theme for the activities and each year’s event is derived from a developmentally appropriate children’s book, selected by the child life specialists. Each family takes home a copy of the book with them from the event. In making adjustments to the event, the committee knew families would still be expecting some type of formal ceremony to honor their child. The ceremony was condensed to 20-30 minutes in duration. It includes a bilingual gathering and reflection of the theme presented in the year’s selected book, a reading of each child’s name, and presentation of a communal piece of art: a song, a video, or a written piece that has been created by all of the attendees at the event during the activity station session. Following the ceremony, families are invited to return to their activities, enjoy refreshments, and spend some time interacting with other families, staff members, or community resource representatives in attendance.

Specific Activities Sidebar

Formal evaluations were provided to staff members who attended the redesigned event to gain their feedback regarding the new format. Feedback specifically asked staff to rate both the length of the activity session and the formal ceremony on a Likert scale ranging from too short, to appropriate length, to too long. Additionally, staff rated individual activities on a Likert scale measuring how meaningful the activities appeared to be for families. Finally, staff members were provided an opportunity to provide open-ended responses. Responses indicated the activity session and formal ceremony were both appropriate in length, although some suggested expanding the activity session even longer than one hour in duration.

Soon enough, we were able to share our stories and discuss our beautiful children. I didn't even realize we were both crying. I never would have been able to approach her and talk about my son had we not been placed together in that setting.

Initially, the committee was unsure of how families would respond to the drastic change of format. Although there has not been a formal evaluation provided to the families attending the event, informally, these families have expressed overwhelmingly positive reactions to the change. Families have mentioned that the hour of activities allowed them the opportunity to meet and speak to other families with a shared experience in an open, welcoming and supportive environment. One attendee stated,

“The pressure of the situation was off. Me and this other woman both were working on creating a wire tree to represent our child. We started talking about how to twist the wires and which color beads we would use in our creations. Soon enough, we were able to share our stories and discuss our beautiful children. I didn’t even realize we were both crying. I never would have been able to approach her and talk about my son had we not been placed together in that setting. I asked to be invited again next year.” Another parent said, “I was so nervous to bring my 5-year-old with me to the event this year. She has struggled so much with losing her sister and I just didn’t want to risk her experiencing any type of pain like that again. I had not been good with talking to her about her sister. I just didn’t know what to say. Shortly after arriving, she pulls me over to a table with her. She tells me ‘Look Daddy, I’m making a thought stone for Jenna so I can hold it and think of playing and laughing with her. Isn’t is so pretty? I think she’ d like it!’ I almost collapsed right then and there. She benefitted so much from being able to talk about her sister and make something for her. I was blown away.”

Instrument

The committee has continued to plan the Pediatric Evening of Remembrance in this format, offering families interactive bereavement activities with a Certitified Child Life Specialist present at each station to support families through this grief experience. The event continues to evolve with increasing participation from community resource organizations and various volunteers and sponsors dedicated to continuing to improve this event for families. For example, the Hole in the Wall Gang Camp Hospital Outreach Program now partners to offer a station at the event.

Representatives from community resources have a table where they offer families resources and information. A different nonprofit organization funds the purchase of a book for each family in attendance at the event. The hospital volunteer program supports the event with dedicated pediatric volunteers, as well as the presence of three dog therapy teams, to staff a “safe play space” which allows siblings and any children in attendance to take a break from the activities and engage in play and normalization. All of the child life staff members in attendance volunteer their time for this event and Arts for Healing staff members are compensated for their time and talents.

With the change of format, the committee also participated in additional staff outreach to encourage staff members to attend the event. Staff members attending the Pediatric Evening of Remembrance are participating in the event to provide support to bereaved families. The goal of their attendance is to show families that not only do they remember those children who have died, but also that they actively honor these children. Staff members are invited to participate in certain activities throughout the event that provide healing/therapeutic intervention; for example, writing messages of hope on luminaries displayed at the event. Staff members have expressed having difficulty withholding their emotions during the formal ceremony and have reached out to child life staff for advice. Child life specialists continue to validate that it is normal and acceptable for staff to show their emotion during the event, as families truly appreciate seeing the professionals impacted by their children in that way. The pediatric chaplain is available throughout the event to assist staff members who might need support in the expression of their emotion.

There is a separate event for staff members held at the hospital, the Staff Evening of Remembrance. During this event, professionals are able to more candidly express the difficulties or address their emotions surrounding the loss of pediatric patients. This event includes moments of reflection and opportunities for staff members to lean on one another to process the loss of children throughout various units in the hospital system. Planning this type of event can be stressful, particularly for the child life specialist. Concerns may include whether the event is too somber or whether families feel the event is not acknowledging the devastation of their loss by having portions of the event be uplifting. There was also concern about how to make it easier for families to walk through the hospital door for the first time since leaving the hospital without their child.

The committee has found that by creating a sense of community through the interactive activities at the beginning of the event, families connect with and support one another. In addition, many families arrived eager to reconnect with the staff members who accompanied them during the most difficult moments of their lives. For staff members, being able to see a family again, or to see a sibling again, and tell them “I always remember your child; your brother; your sister” is something invaluable to provide to families. The emotion of the night is sincere, often raw, and sometimes overwhelming, but no matter what, by the end of the evening it serves to unite a room full of people in the most special and significant way.

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