Coalition Meeting Set for November 19
We've heard from members about the importance of public outreach as a way to encourage advance care planning - and the value of having compelling messaging that can be used to motivate patients and families. Come join us on Monday, November 19 at 2:00 p.m. in Boston to talk about the issues and share ideas about effective engagement with your most significant constituents.
At the meeting, we will update you on the initiative we've launched to develop and test potential messaging. You will hear from the communications agency we've engaged as our partner in this endeavor - and we will directly involve attendees in brainstorming about the proposed research and how it can be put to practical use by Coalition members. This will be an opportunity for us to hear from you about how we can get the most out of this project. Please join us!
Helping Parents Face the Unimaginable
The Courageous Parents Network provides information, comfort and support for parents who find themselves in the unimaginable situation of caring for a seriously ill child. Founder Blyth Lord drew on her own experience caring for her daughter, who had a rare and life limiting disease. “I wanted to find a way to do what I could to bring what had helped us to families who are going through it today,” Lord says. “We give parents the resources so they can be the best parents they can be and give providers a way to understand the family experience.” She started the nonprofit in 2014.
Lord says parents of seriously ill children face an intimidating amount of information to digest that is often difficult to absorb and understand. “There is no playbook for this, so parents don’t know what they want and need until it is upon them, and even then, they don’t have the language for it.” Courageous Parents Network builds that language in a number of ways. The organization provides guides (in English and Spanish) on their website on topics parents have said they need most – including how to understand anticipatory grief, consider difficult decisions about medical interventions, and how to support healthy siblings. The nonprofit’s website also has podcasts, a blog with contributions from parents and providers, and over 500 short videos. Many of these materials feature parents of seriously ill children talking about their experiences, so parents know they are not alone.
A major topic the nonprofit wants parents and primary care providers to know more about is palliative care. “That is our one editorial agenda: promote the value of palliative care. Families don’t understand what it is, so they are not asking for it,” says Lord. “Some parents tell us they wish they knew about it sooner.” She defines palliative care as care that focuses on the psychological, social and emotional well-being of the patient and the rest of the family. This allows parents to make the right decisions for their family, so their child can live their best life for as long as possible.
Courageous Parents Network recently asked families and providers what they appreciate most. Parents were grateful for the group's guidance on how to advocate for their seriously ill child and support the siblings, as well as helping them consider care goals and make decisions that are consistent with their family values. “When there are no good choices, parents need to feel they are doing a good job. It helps mitigate regrets, and it’s the regrets that can be so corrosive.” Providers praised the organization for helping them become better informed about the lived family experience and say they are using it for self-education, family referrals and training. Courageous Parents Network is currently developing a curriculum with its professional advisory board and the Pediatric Residency program at Mass General Hospital for Children for use in training with non-palliative care providers that includes the parental perspective.
If you want to learn more about the Courageous Parents Network, please visit their website. Anyone who wants to add their parental perspective to their work can email Blyth Lord at [email protected].
If you have a story to share about your organization, please let us know! Contact Richard Averbuch at [email protected].