Families have confidence in their ability to be the best caregivers they can possibly be, resulting in minimal regret and maximal healing. Pediatric medical providers feel increased efficacy in delivering family-centered care.
PROGRAMS AND SERVICES
Courageous Parents Network programs and services are rooted in the experience of CPN’s founder, Blyth Lord, who found comfort and confidence in three elements of caring for her seriously ill child:
- A pediatrician who practiced palliative care
- A grief counselor who helped the family navigate their grief and cope with their anxieties during their child’s life and as they prepared for the future
- Having a sense from others’ experience of what was forthcoming—and how her family might anticipate and, eventually, emerge from the fog of grief
From this, the Network has grown to include the insights and experiences of dozens and dozens of families and pediatric providers who stress the importance of creating an environment of mutual understanding and shared decision-making. We emphasize this importance through
Education: Providing easily accessible, expertly vetted information and tools that address families’ spoken, and unspoken, questions and concerns.
A rich library of original videos, podcasts, downloadable guides, and Guided Pathways (curated educational experiences) is available free of charge, 24/7. This material helps frame critical, sensitive issues; e.g., working with the medical team, making difficult decisions, caring for the siblings, tending the parenting partnership, coping with grief, anticipating end of life, and bereavement.
Health care administrators and pediatric care providers are encouraged to introduce families to Courageous Parents. In addition, a password-protected Provider Portal offers materials that give voice to the parent perspective and promote mutual understanding and empathy. These materials are appropriate for providers just beginning their careers, and for those seeking ongoing education opportunities.
Community: Connecting families and providers sharing personal stories and questions about the illness journey, to minimize isolation and promote the benefit of shared experience.
Educational materials are supplemented with options to connect more deeply and personally. Online events, presentations at virtual and in-person hospital rounds, connections through our advocacy work (below), and opportunities to contribute to the Courageous Parents blog are just some examples.
Advocacy: Increasing awareness of and demand for pediatric palliative care to enhance quality of life for the whole family.
Courageous Parents is not a political organization, but it is one with a strong point of view. As advocates, we engage with thought leaders and leading palliative care organizations at the national level, targeting providers, policy makers and the public to shine a light on the value of pediatric palliative care (PPC). We present to providers and industry organizations; participate in research projects; and collaborate on essays, studies and reports to encourage its adoption. The more we can promote PPC benefits, the better the outcomes for all concerned.