For more than a decade, pediatric palliative care researchers have explored how parents of children with serious illness think about their role and what it means to be a “good parent.” It is important to note that the term “good parent” is not a judgment from clinicians. The term originated from parents of children in treatment for illness. Across studies, parents describe the “good parent” ideal as something they strive toward, not as a judgment or a measure of failure.
This Guide draws on that research along with the lived experiences of families and clinicians in the Courageous Parents Network community. While every family’s journey is unique and cannot be fully normalized, the goal of this Guide is to offer insight, encouragement, and a sense of connection—helping parents reflect on their own values and find strength and support along the way.
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.
Within this one page guide you will learn how over time, your grief (from the loss of your child) will stay much the same, but your life will begin to grow 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.