CopingSpace

Program Description

A hospital stay can be a terrifying experience for a child and their family. Research demonstrates that not only do many children experience Post Traumatic Stress Symptoms (PTSS) after undergoing hospitalizations (30% in young children, up to 49% of adolescents with cancer), but their parents and siblings do as well (42% of mothers; 25% of siblings). (Kazak, et al., 2015) Ryan’s Case for Smiles (CFS) is uniquely positioned to provide much-needed resources to support these children and their families. In partnership with the Center for Pediatric Traumatic Stress, we developed CopingSpace: an evidence-based website that is easy to understand and tailored to the challenges faced by pediatric patients and their families. Key focus areas include caring for your child, for his or her siblings, for yourself, and for your partner. CopingSpace includes a partnership with Alex’s Lemonade Stand Foundation to support siblings who are left isolated and frightened by their sibling’s illness or injury. Perhaps most importantly, we are developing curriculum for Child Life Specialists (CLS) to recognize and address PTSD. Our goal is to prepare all CLS at the 360 hospitals we serve to recognize triggers and symptoms of PTSD and mobilize resources to support children and their families.

Creativity

CopingSpace is innovative in four ways: 1) Our website provides unique, evidence based resources for families when they need it most – during and immediately after their child’s illness or injury. 2) Our whole-family approach is unique in providing easy access to resources for all those who surround the sick child – parents, siblings, caregivers, friends, and schools. 3) We are the first and only organization to focus on educating CLS about Pediatric Medical Traumatic Stress (PMTS) and provide them with coping resources for families, empowering them to vastly improve psycho-social support for children and families facing life-changing illnesses and injuries. 4) We have a unique and powerful system in which to provide families access to these resources through insert cards in each of the over 200,000 pillowcases our volunteers deliver each year. Our current reach includes more than 360 hospitals in 120 regions across North America.

Leadership

Our goal is to ensure every pediatric hospital in North America incorporates coping and PTSS avoidance capabilities as a core component of their trauma-informed care models. CLS spend significant time with the families of hospitalized children, but are rarely included in trauma informed care models and training programs. We seek to empower these professionals to recognize and address PMTS and play a leadership role in helping hospitals meet new standards for psychosocial care, published in 2016 (Wiener, et al., 2016). CFS staff will speak at Child Life Conferences, lead webinars, provide online educational information, and support research to validate our resources for families, hospitals and CLS. We are seeking continuing education credits for all of our CLF training programs. Ultimately, we believe that CopingSpace training will enable better outcomes for thousands of children in the more than 360 hospitals across the nation in which Ryan’s Case for Smiles is present.

Sustainability

CopingSpace has been designed to ensure we provide families with the most current evidence-based resources, now and in years to come. Our collaboration with the Center for Pediatric Traumatic Stress enables CopingSpace to provide families with the most current resources that reflect the growing base of knowledge and best practices in PTSS care. Our partnership with Alex’s Lemonade Stand Foundation provides a sustainable platform for our Sibling support programs, while also providing financial support and access to their vast social media audience. Finally, CFS is completing its first capacity-building campaign, in which we have secured multiyear commitments totaling nearly $1 million to build and sustain CopingSpace, support our growing mission, increase our program reach, and ensure our long-term financial sustainability. These commitments are diversified between individual and corporate/foundation support for increased stability. The Scattergood Innovation Award, if granted, would enable us to reach our $1 million campaign goal.

Replicability

CopingSpace was developed foremost as an online tool to be accessible to any hospital, any community, and any family with a child experiencing a life-changing illness or injury. Over the next few years we will be partnering with families, Child Life Staff, PTSS, clinicians, and researchers to provide disease-specific coping resources. Our next three projects will focus on pediatric cancer, heart disease, and family grief. Secondly, we will be training Child Life Specialists across North America to prepare them to support their patients and families while ensuring our materials are available as a part of their trauma informed care programs. Finally, we plan to expand the availability of our resources to families by partnering with hospitals, websites like Children’s Hospital Los Angeles’ HOPE Portal, The Association for Child Life Professionals, Alex’s Lemonade Stand Foundation, and other disease specific associations and organizations.

Results/Outcomes

To date, Ryan’s Case for Smiles and its 120 volunteer-led chapters have distributed over 1.7 million whimsical pillowcases to hospitalized children throughout the US and Canada to give them the comfort of something bright and cheery in what may otherwise be a very scary place. Since the launch of CopingSpace, printed cards included with the pillowcases encourage families to visit CopingSpace.org. Feedback from families, CLS, and nursing staff has been exceptionally positive from families across the Philadelphia region. In January 2018, CFS will publicly launch CopingSpace across North America, and will be delivering over 200,000 pillowcases with referral cards, reaching an estimated 50,000 families annually (HIPPA rules prevent exact counts). CFS has contracted with the Center for Pediatric Traumatic Stress to conduct outcomes research on CopingSpace beginning in late 2018 and continuing into the future.