Creating Virtual Options for Family Support in the Time of COVID: Tips and Tools for Innovative Programming

Throughout the month of September 2020, the Pediatric Palliative Care Webinar Series and SWHPN collaborated to provide three joint sessions on new and different methods of meeting the needs of our families and patients during COVID. Our panelists shared innovative ideas and problem-solving tips to help organizations ensure successful virtual events, provide virtual memorialization opportunities, and execute virtual support groups. The recordings from the webinars as well as the resources mentioned are listed below.

This town hall series content is offered free of charge thanks to the generosity of the Funeral Service Foundation.


Helping Families Explore Virtual Memorialization Options

[click the video to access the presentation]

 

Panelists:

Ali Biggs, MBA

Ali is the co-founder and CEO of LifeWeb 360 - memorial scrapbooks built by your friends & family. LifeWeb 360 is a digital platform that helps bereaved families gather memories and receive support from their community. Ali loves helping folks to celebrate their person and capture their essence through shared stories, photos, and videos

Buffy Peters
 
Buffy Peters is the Director of Hamilton’s Academy of Grief & Loss. The Academy is a division of Hamilton’s Funeral Home and provides grief-related education, resources, and support to families served by Hamilton’s as well as the community.

Amy Cunningham

Amy Cunningham is a licensed funeral director and celebrant in Brooklyn who collaborates with New York City families to help them create the best funerals and farewells possible with Fitting Tribute Funeral Services. She specializes in green burials in cemeteries certified by the Green Burial Council, simple burials within the NYC- Metropolitan area, delayed transfers and home funerals, and witnessed cremation services in Green-Wood Cemetery's gorgeous crematory chapels.


Setting Up and Managing Virtual Support Groups

[click the video to access the presentation and chat messages]

Panelists:

Lori Ives Baines, RN, MN, (CPB, CWT)

Lori teaches at the local university and is an RTS Coordinator with Gundersen-Lutheran Health System in LaCrosse, WI, teaching internationally about perinatal, neonatal, pediatric and adult bereavement support. She is the Hospital-wide Grief Support Coordinator, PACT , at The Hospital for Sick Children in Toronto. With COVID, Lori and her team have adapted their education, parent and sibling support and resourcing with families using available technologies, both individually and in group settings. 

Allison Fine, MSW, LICSW

Allison Fine is a clinical social worker based in Seattle, WA. Allison's lifelong passion for supporting those living with chronic illness prompted her to start the Center for Chronic Illness in 2016, a nonprofit organization that offers free, professionally-led support groups and health education programs to the chronic illness community.

Megan Mooney, MSW 

Megan works in end of life research. She is very passionate about hospice, palliative care and end of life. Megan has been hosting Death Cafes, support groups for caregivers on Facedbook,  since March 2013 and loves helping to take the taboo off of death. This is such a wonderful community to be a part of.

Gina Kornfeind, MSW, MS

GIna is the Pediatric Pain and Palliative Care Social Worker and Bereavement Coordinator at UCLA Mattel Children’s Hospital in Los Angeles. She is also the Director of the Comforting Hearts Family Bereavement Support Group for families who have had a child die (which is now via Zoom!). Gina feels passionate, convicted and privileged to work in Pediatric Bereavement where she can help to support families and staff on their journeys involving loss. 

Resources from this webinar:


Hosting Virtual Hospital and Hospice Memorialization Events

[click the video to access the presentation and chat messages]

Panelists:

Alice Ryan, LICSW

Alice Ryan began her social work career over 23 years ago. Most of her practice orientation has been in large healthcare settings. She was drawn to the needs of patient and families as illness progressed towards the end of life. Her practice eventually led her to her current work in grief support, with special emphasis on the experience of complicated grief through the death of a child. Alice is particularly interested in finding ways to increase access to culturally responsive grief support for all communities. She has also been a faculty member of the UW School of Social Work since 2012, teaching in the MSW program and has been recognized with the MSW Student’s Choice Teaching Award for the academic years: 2015-2016, 2018-2019, and 2019-2020. Although she values her presence in academia, she strongly identifies as a practitioner and believes that service to others informs and shapes theories.

Amanda Sahli, MS LAMFT

Amanda is the Bereavement Coordinator at Phoenix Children's Hospital, and one of the Pediatric Bereavement Counselors for Hospice of the Valley. She has worked in grief and loss for her entire thirteen-year career as a marriage and family counselor and child therapist. Amanda is Phoenix native and avid University of Arizona hockey fan. In her down time, she enjoys cuddling with her two cats (Clyde and Holly), dog (Ginger), and fiancé (Hotchy) while binge watching Netflix or reading non-grief related books. She is passionate about supporting grieving families as well as educating clinicians and the community about how to care for and support grieving people.

Judy Shannon

Bridget Bahneman APRN, CNM, CT

Bridget P. Bahneman APRN, CNM – Bridget is a board certified Advance Practice Registered Nurse, Certified Nurse Midwife, working in the Bereavement Services Program of Children’s Minnesota. As Bereavement Coordinator, Bridget is responsible for leading and developing the programming of Bereavement Services, a program which is present to provide expert and compassionate bereavement care to families who experience the death of their child. Bridget received her BS from the College of St. Benedict and her MS from the University of Minnesota. Professionally, Bridget’s background has included the care of bereaved families, and personally, Bridget is a bereaved parent herself. Bridget has a passion for caring for bereaved families and for advancing excellent family-centered end of life care. 

Resources from this webinar: 

  • At-Home Memorial Service idea - Written text which was sent out to families by mail in May 2020 (around the time our in-person Memorial Service was scheduled to happen). We just printed it on our Bereavement Services letterhead. With the written Memorial Service idea, we included one of the give-away gifts we were planning to hand out at our in-person service (seed paper). Feel free to adapt for your location.
  • Memory Bash in a Box invitation - Including an electronic copy of the invitations we are sending by mail to families this week.  We had previously advertised an in-person event so felt the need acknowledge this in the invitations.  This attachment offers an idea of the wording we used to explain the transition to an at-home event.
    • Original Memory Bash idea from Allison Gilbert
    • We learned about this idea during the National Alliance for Grieving Children Annual Symposium in June 2019.   
  • Seed Paper:  Seed paper can be purchased from a number of different locations.  We used butterfly shaped paper from Of the Earth

  • Art/Music Activities that can be included in an "in a box" or an at-home events:  We are still in the process of planning which art/music activities we will include in the box we send, but here are a few ideas that have been proposed (pictures below for the art activities):

    • Tissue paper mason jar lantern or vase

    • Writing a message on dissolving paper - either dissolving it in a pitcher of water and pouring it somewhere important (example:  memory garden in your yard) or placing it in a meaningful body of water near you.

    • Memory bracelet

    • Memory ornament

    • Personalized frame

    • Decorating picture frames

    • Links to one of our Music Therapists doing a pre-recorded musical intervention.

    • Links to one of our Music Therapists leading some meditations.

    • Maybe a link to Child Life reading a story about grief.

    • Maybe a link to Spiritual Care leading some sort of reflection.

    • Any other art, music, activity, therapeutic ideas.

  • Ways we try to create an inclusive service: Over the years we've worked to make our Memorial Service feel inclusive. We still have more work to do(!), yet thought I'd mention some ideas we do in case they might be helpful to your organization (*The examples below are from our former in-person services, and therefore some may be more helpful when planning an in-person event).

    • We hold our annual Memorial Service off-campus at a community location. Some families have shared that it's easier to attend an event held in a community location, than it is to return to the hospital campus. The downside to this decision is cost.

    • We've purposefully chosen to hold our service in a community location that has no religious affiliation.  Additionally, the last 2 locations have been selected for their diverse neighborhood settings/public transportation accessibility/organization philosophy/beautiful natural setting/etc.  

      • For >10 years we held the event in a large banquet room of the Amherst H. Wilder Foundation, and organization serving community needs.

      • When we realized we were outgrowing the Wilder space, we were lucky to find the Great Hall at Silverwood Park - beautiful indoor space with attached private patio, surrounded by a park that is open 365 days of the year.  

    • We have a Children's Staff Choir that sings at the service.  We pick music that does not include religious themes, and with the added talents of our Music Therapists and Interpreters we change parts of at least one song to another language(s).

    • We used poetry and other non-religious readings during the service.

    • We use the "Litany of Remembrance" (from Gates of Prayer: A New Union Prayerbook) as the only "prayer" during the service.

    • Spiritual Care staff do a blessing that is spiritual not religious.

    • We try to invite a diverse group of staff and families to participate in doing the readings, running the service, etc.

    • In the printed program we have a statement that says "This service is designed to be inclusive in nature and reflects a diversity of beliefs and faith traditions.  If you have suggestions or ideas for next year's service please contact _____".