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Children affected by cancer are 7x more likely to experience a mental health challenge.
We believe that Express, Create, Heal can change the way we support them when they need it most.
Within the brave battle against childhood cancer lies a lesser-known adversary:
the toll it takes on mental health.
Beyond the physical fight, survivors often face a silent struggle with negative mental health symptoms intricately linked to their treatment journey and the lingering specter of 'physical late effects.'
We believe in a comprehensive strategy that embraces the intricate web of challenges faced by children with cancer and survivors alike. By weaving together support systems that address physical, emotional, and social needs, we're not just enhancing life quality during treatment; we're paving the way for brighter, healthier futures for our courageous fighters. Join us in championing holistic care and fostering enduring well-being for every childhood cancer hero.
The shadows cancer creates linger long after treatment ends.
The silent struggle of children and families navigating childhood cancer is exacerbated by a stark reality—essential mental health services are scarce, leaving wounds unhealed due to the lack of community or education for their specific challenges, unaffordable cost of access, or shrouded by the heavy weight of mental health stigma.
However, for kids, teens, and families fighting cancer, programs like ECH can be a lifeline and are necessary for survivors not just to survive post-treatment, but to thrive.
It's time to approach support holistically for children with cancer.
The neurodevelopmental consequences of pediatric cancer and its treatment refer to potential adverse effects on a child's cognitive, emotional, and physical development. These consequences can include cognitive deficits, emotional challenges, and physical impairments resulting from cancer and its treatments. It's time for us to start bringing physical health and mental health support together in supporting children with cancer.
While we're advancing childhood cancer survivorship, we must do more to support the mental health and wellbeing of survivors.
According to researchers, Children are now surviving pediatric cancer at unprecedented rates, marking a success in modern medicine (Marusak, 2018). However, it's increasingly recognized that the effects of cancer and its treatments extend beyond physical health, leading to cognitive, emotional, and psychological challenges like attention issues, anxiety, and posttraumatic stress symptoms. While the neurotoxic impact of cancer treatments on brain development has been well-documented, the role of childhood adversity in the context of pediatric cancer has been largely overlooked in neuroscience research (Marusak, 2018).
Through our partnership with MindArch Health and Stony Brook University, we examine the mental and behavioral health vulnerabilities of childhood cancer survivors.
To further explore these areas as they relate to children with a diagnosis of cancer or pediatric survivors of cancer, research studies were explored.
These insights can support the task force in identifying high-risk populations that need more attention when designing proactive preventive interventions and help guide all of our programs.
More than 50% of cancer patients and survivors experience an aspect of social isolation at least some of the time, and 31% report feeling lonely very or somewhat often.
Those most likely to report higher levels of loneliness include those who live alone, people of color, and lower-income earners.
The vast majority (89%) agree it would be helpful for friends and loved ones to have training in how to best support and connect with cancer patients. Suggested topics include things to say and things to avoid saying, how to listen, specific ways to offer help, and factual content to combat fear and misinformation. We are launching a program that will help meet these needs in Fall 2024.
We believe that building community-based solutions and utilizing play as a language for education can increase children's and teens' mental health, well-being, and resilience.
We aspire to establish a sustainable, nationwide initiative that continues to provide vital mental health education and resources for children battling cancer and their families and families. By fostering strong community partnerships, leveraging technology for broader reach, and continuously refining our programs based on ongoing evaluations, we aim to create a scalable model that can be implemented in various regions and, ultimately, influence our current healthcare and educational systems to place a higher priority on the mental health and wellness of children and teens affected by cancer.
Our measurable impact
To understand the results of our programs and activities, we collect a variety of data using a comprehensive evaluation framework guided by the EQUIP model. This framework incorporates quantitative and qualitative methods to assess progress towards our expected outcomes.
Our Short Term Goals
Our short-term goals focus on improving participants' quality of life indicators, such as mental well-being and coping skills, measured through pre- and post-program surveys. We also track increased access to mental health resources, including attendance at workshops and utilization of online resources, monitored through attendance records and participant feedback.
Our Long Term Goals
Long-term goals include sustained improvements in mental well-being, assessed through follow-up surveys, and positive feedback from healthcare partners, gathered through surveys and interviews. We also measure heightened mental health awareness within communities through surveys, focus groups, and media monitoring.
Measuring Impact
Measurement tools include standardized surveys, direct observation checklists, and qualitative interviews with participants, volunteers, and healthcare partners. Trained volunteers play a crucial role in data collection, administration of surveys, facilitation of workshops, and conducting qualitative interviews.
Utilizing this evaluation framework and trained volunteers, we aim to track program effectiveness, continuously improve our services, and better meet the needs of children and families impacted by childhood cancer.
Here's what we've accomplished to date:
18
ECH Programs
researched and written for childhood cancer fighters, survivors, siblings and caregivers that can be hosted in-person or virtually.
157
Student Volunteers
trained to lead our peer-based programs across the country, directly in their community through partnerships with hospitals and NPO's.
7 Hospital
& NPO Partners
Partners provide invaluable support in identifying participants, offering facilities for program delivery, and program growth.
187 people impacted
Since piloting our program in 2022, we've been able to reach more than 187 childhood cancer fighters, survivors, siblings, and caregivers.
Virtual Support Sessions
We host live virtual support sessions with our Mental Health Specialist on wide variety of topics to improve access to education and community.
Coming Soon: ECH Education
The ECH Education Programs provids access to trainings for professionals in nonprofit, education, and medical sectors, enhancing their ability to address the challenges faced by families in need
Coming Soon: ECH Alliance
Access community wide initiatives to raise awareness, promote understanding, and cultivate empathy for the needs of families dealing with childhood cancer, fostering a more compassionate and resilient support network.