Courageous Parents Network complements the important work of physicians, nurse practitioners and nurses, social workers and allied health professionals as they accompany families whose child faces serious illness. Because CPN’s resources are delivered electronically, both providers and families can access them whenever, and wherever, they wish: in the office office, at home, or even at the child’s beside in the hospital or treatment center.
- A gentle way to start difficult conversations with a family. Short videos in the online video library address some of the most difficult topics (e.g. self-care, marriage, spirituality, difficult decisions, transitioning to end-of-life, parental identity) from the parent perspective—with professional guidance interspersed—in simple and honest terms. Watching others in a similar situation can relieve feelings of isolation and bolster parent confidence. Sometimes the discussion in the videos brings up questions or feelings a family may not have been able to broach on their own.
- A support for helping parents anticipate and navigate new and difficult terrain. Beginning with diagnosis, the family needs to find its own way through a multitude of systems and processes. The videos and guides encourage self-determination and decision-making, allowing the family to advocate for its values, needs and wishes, and improving communication with providers.
- A resource that highlights the benefits of pediatric palliative care. Courageous Parents seeks to debunk myths about palliative care, especially confusion with hospice, as a means to advocating for more consideration and acceptance. The site includes helpful factual information along with positive insights from parents that can support discussions of care and treatment options.
- A teaching tool that broadens and deepens our understanding of the complexities of parenting a child who is seriously ill. CPN videos offer providers a rare glimpse into the parent/family experience and thus are an invaluable resource for instructing residents and interns. The videos are also being used to raise providers’ awareness of what parents worry about beyond the disease; for example, dynamics with medical providers, exhaustion from the relentless stream of visitors, a desire to be liked by their child’s medical team.
“At the heart of the practice of palliative care is understanding the lived experience of a family whose child faces a serious illness. When we educate medical students, residents and colleagues about palliative care, the parent voices of the Courageous Parents Network teach them and reach them in ways that our traditional methods of education cannot, by giving us a privileged window into their lives. I have seen how each practitioner finds their own humanness and connection in these powerful parent stories, and can take away a different understanding that helps them become better, more compassionate, and more effective caregivers.”
— Dr. Patricia O’Malley, Massachusetts General Hospital for Children
Below are two printable handouts, one inviting providers to utilize Courageous Parents Network in their practice—for distribution to your colleagues—and the other inviting Parents to connect with the network, for distribution to your patient families.