Interpersonal and emotional support issues present some of the deepest and most pervasive challenges for pediatric brain tumor patients and families. In the Pediatric Brain Tumor Foundation’s Community Health Needs Assessment report, family survey respondents cited emotional distress and social isolation as the greatest challenges patients and family members face.
In response to the results of the PBTF’s needs assessment and to combat these interpersonal and emotional support issues brain tumor families face, the PBTF announces the launch of its national Peer to Peer Mentoring Program. Developed with generous support from Coverys, the Peer to Peer Mentoring Program matches parents, caregivers, teens and young adults with trained mentors who have experienced the challenges of a childhood brain tumor diagnosis.
“The Pediatric Brain Tumor Foundation’s Peer to Peer Mentoring program is a unique support service that fills a gap healthcare professionals cannot, because we are unable to tell parents we’ve walked in their shoes. We can’t know what it’s like to go through a brain tumor diagnosis and treatment with your child. Having parents partner with us, sharing their personal stories and experiences with the families we care for, is such a valuable resource,” says Mary Baron Nelson, PhD, RN, CPNP, Assistant Professor of Clinical Pediatrics, Keck School of Medicine of USC.
According to a study in the Journal of Pediatric Oncology Nursing, because of childhood brain tumor patients’ and survivors’ increased risk for neurocognitive impairments, chronic health conditions, second cancers, and sometimes early death (Armstrong et al., 2009), parents of children with brain tumors endure lifelong challenges with their children and would benefit from shared intimate knowledge with others facing similar challenges.
However, because pediatric brain tumors are a rare disease, family members may not know others they can talk to who understand firsthand what they’re going through.
“Families experiencing a pediatric brain tumor diagnosis often tell us that there’s no one who understands the complex issues they face. Finding someone with a similar experience can help family members feel less alone in their journey no matter where that journey leads,” says Kathy Riley, MPH, CHES, PBTF’s vice president of family support. “The Pediatric Brain Tumor Foundation’s Peer to Peer Mentoring Program connects families with trained mentors who have experience facing the challenges that come with this devastating diagnosis. PBTF peer mentors provide emotional support, suggest information sources and serve as an example of someone who has ‘been there.’”
Families who would like to request a mentor can complete the PBTF’s online mentee application, and a member of the PBTF’s Family Support team will contact you once your application is submitted. Mentors and mentees are matched according to multiple factors that may include tumor type, age of patient, treatment options, family situation, type of need, and geographic location.
Along with funding research for cures that will lead to a better quality of life for kids with brain tumors, the PBTF is committed to equipping and empowering family members by connecting them to others through our family support programs.
If you have questions about any of the PBTF’s family support programs or are interested in becoming a mentor, please contact our Family Support team at 800-253-6530, x306 and [email protected].