Editor’s Note: Patient Worthy is honored to share this article from our friends at Courageous Parents Network.

Parents of well children regularly receive anticipatory guidance–proactive communication about what’s coming in their child’s development. They are familiar with developmental milestones, which are measured and reviewed by their child’s pediatrician. They devour parenting books on these and related topics. Anticipatory guidance conversations empower families with knowledge and build trust with clinicians.

Research¹ confirms that parents feel more satisfied with healthcare experiences that include forward-looking knowledge and understanding. However, parents of medically complex children often face a significant gap in this support. Whether because the clinicians have limited training in rare conditions or hesitate to have difficult conversations about potentially challenging outcomes, these families frequently navigate their complex journeys without a clear roadmap.

Courageous Parents Network (CPN) was created to help fill the gap for these families, focusing on providing resources and tools to empower them; specifically:

• Practical, downloadable guides addressing emotional and social aspects of the journey
• Video interviews with other parents and clinicians, offering their experience and perspectives
• Parent- and clinician-authored blogs sharing reflections on the journey
• Live-streamed programming featuring families and clinicians discussing a multitude of topics
• An educational resource, NeuroJourney, devoted to the medical, social and emotional needs of families whose child has a severe neurological impairment (SNI)

These resources enable parents to establish themselves as experts in their children’s care, giving them the language and confidence to have meaningful conversations with medical teams about their goals and decisions. It is not a coincidence that clinicians regularly use the resources as well, not just in their practice but also for self-education and supporting their colleagues. Their collective feedback, through both anecdote and quantitative research, confirms what we all intrinsically believe: that while anticipatory guidance cannot eliminate anxiety, knowledge and accompanying guidance equip parents with the confidence to handle both immediate crises and challenges that may lie ahead.

The Courageous Parents Network’s resource NeuroJourney.org offers anticipatory guidance specific to caregivers of children with severe neurological impairment.

1. Edwards, Jeffrey D. (2017) Anticipatory Guidance on the Risks for Unfavorable Outcomes among Children with Medical Complexity, The Journal of Pediatrics Volume 180 247-250