Children’s at Home
CMCH piloted three online communities: one for young patients with Neurofibromatosis Type 1 (NF1) – a genetic condition that puts patients at-risk of developing nervous system tumors, and one for parents of young patients with NF1. In 2016, we launched a third site for young patients with Celiac Disease – to better understand the management of the gluten free diet.
These social networks build upon the Center’s 20-year success of Video Intervention/Prevention Assessment (VIA), our signature method, in which adolescents and young adults create video narratives of their illness experience. Children’s at Home (C@H) is the next iteration of VIA where patients can create and share video narratives with their peers. The site is monitored by Boston Children’s Hospital (BCH) clinicians, secure, and dedicated, for patients that share a diagnosis.
“It was cool to be connected to others with NF online, it showed me that I’m not the only one.” – Adolescent participant
Through C@H, patients with NF1 met other patients with NF1 for the first time. They could connect, build community and crowd-source solutions for everyday problems, with the knowledge that BCH medical experts were there to moderate the site and keep them safe from the comfort of home.
“C@H made it easier to connect with other parents who care for children with NF. Listening to their stories, it was easy to connect to them, everyone was humble and normal, every day folks, I felt comfortable and at ease.” – Parent participant
C@H aims to increase self-efficacy through self-expression and improve health outcomes by improving quality of life (true to VIA’s findings). Looking ahead, C@H hopes to fit into the electronic Boston Children’s Hospital (eBCH) initiative.
Video Intervention/Prevention Assessment
In 1994 CMCH broke new ground with Video Intervention/Prevention Assessment (VIA), by being the first to loan video cameras to adolescent and young adult patients with chronic illnesses and asking them to “teach us” what it is like to live with their condition. Our signature VIA method encouraged self-expression among young patients and shifted the locus of control from the doctor to the patient. This kind of partnering between patient and clinician in healthcare was the first of its kind, seeing the patient as the “expert” of their condition. Creating video illness narratives for clinicians to witness encouraged ownership of one’s diagnosis and improved health outcomes…kids got better. Clinicians learned more about the daily realities of living with illness through the window that VIA created. To learn more, visit the VIA website: viaproject.org
- “What young people with spina bifida want to know about sex and are not being told”
- “Hearing the patient voice: Using video intervention/prevention assessment to understand teens with cystic fibrosis”
- “Visual narratives of the pediatric illness experience: Children communicating with clinicians through video”
CMCH uses media to improve health communication disparities by involving underserved minority youth in video workshops. Building on our collaboration with the Boston Public Health Commission to create video production workshops for teens, CMCH used video as a tool to teach teens life skills and address the HIV/AIDS threat among African American youth. The team provided factual information about HIV prevention and technical video training, then facilitated teens’ use of media to create a public service announcement. The result from 2013 can be seen on YouTube: https://www.youtube.com/watch?v=zqcb2JqY5rE