For more than a decade, pediatric palliative care researchers have explored how parents of children with serious illness understand their role and define what it means to be a “good parent”—a term that originated from parents themselves, not as a clinical judgment, but as an ideal they strive toward rather than a measure of success or failure. This Guide draws on that research alongside the lived experiences of families and clinicians in the Courageous Parents Network community to offer insight, encouragement, and a sense of connection, helping parents reflect on their own values and find strength and support along their unique journey.
There’s also a magazine-style version of this guide that you can browse.
Click here to view it in that format.
This infographic offers guidance on how to navigate support from others as you grieve. You have the right to decide how—and when—to invite people into your process. For some, grieving alongside others feels natural; for others, it takes time and practice. Learning to express your needs, thoughts, and feelings can help those around you offer meaningful support.
Within this infographic, you’ll find practical ways to set boundaries—if and when you want them—while still letting others know that their care and compassion are welcome.
As you explore Navigating Medical Complexity, you will have
your own ideas, reactions and questions. You can use this
worksheet to track your thoughts and questions or to help
you have conversations with your child’s providers.
After reviewing this Guide you will be able to both articulate the value of Navigating Medical Complexity and its potential use in clinical training settings as well as identify appropriate opportunities to introduce the tool to families whose child has medical complexity.
From the time that their sibling is diagnosed with a serious illness, any other children in the family will need support. New concerns and anxieties are present for both children and parent(s). Being aware of these and talking about them right from the start will help to create an environment that fosters good communication and strengthens relationships.
This Guide will help you to anticipate your other child(ren)’s reactions to their sibling’s illness, understand how to respond to and support the siblings, and prepare for potentially difficult conversations with siblings and others.
Siblings of children with a serious medical condition need support. Within this infographic you will find some commonly expressed worries, concerns, and feelings from siblings of all ages, and ideas for how to respond.
The Ring Theory of Support is a helpful framework for establishing roles on your support team. The idea is to determine and communicate who can ask for support as you care for your child, and from whom.
This one-page graphic shows how, over time, your grief after the loss of your child may remain constant, while your life gradually expands and grows around it.
The diagnosis of a serious health condition requires parents to venture into unfamiliar and often challenging territory, such as navigating the healthcare system or making important medical decisions. You will also face a new challenge: communicating with your child about their condition, treatment and prognosis. Indeed, many parents find that this is one of the most daunting aspects of the caregiver journey. Know that you are not alone in this concern and that there is support available to you.
Palliative care offers invaluable support to children and their families, regardless of the prognosis, by focusing on enhancing quality of life while managing a serious illness. Importantly, children can receive palliative care alongside curative treatments, starting as early as the time of diagnosis and continuing throughout treatment and beyond. This Guide provides an overview of the benefits of palliative care in pediatric oncology, helping you understand how it can make a meaningful difference.