From Courageous Clinician Anne Anderson, RN, CHPPN

As the nurse coordinator with the palliative care team at Seattle Children’s Hospital and a 2022 recipient of the Courageous Provider Award, I appreciate CPN immensely. When working with families who feel isolated with a medically complex child, recommending CPN provides them with a sense that they are not the only one navigating a medical journey and all that goes along with this. For a family facing a difficult decision and feeling that there is no right answer, the videos of parents who chose different paths help them understand that loving parents make decisions based on what aligns with their own family’s values. CPN also helps families by providing videos and blogs that help address concerns for the whole family, whether that is for the parents, siblings, or grandparents.

Part of my work also involves supporting colleagues who have distress and fear around how to work with families facing medical challenges or end of life. CPN’s parent videos provide the best teaching about what pediatric palliative care really is; they highlight the issues families face. I have used videos in teaching when I present to a hospice that rarely cares for kids when they are having trepidation about taking on a child. I encourage those with worry about caring for kids to spend some time looking through videos, to highlight that it isn’t all scary, and that there is much joy in caring for children and families.

Thank you for providing such a wonderful resource for patients, families and providers.

2022 Revenue

$631,150 INDIVIDUALS 66% $62,500 CORPORATE 7% $264,500 FOUNDATIONS 27% $4,200 HONORARIA <1% $2,160 INTEREST <1% TOTAL: $964,510

2022 Expenses

$74,297 FUNDRAISING 9% $102,151 ADMIN/STRATEGY 13% $266,204

PROGRAMMING: CLINICIAN OUTREACH 33% $359,924

PROGRAMMING: CAREGIVER CONTENT & OUTREACH 45% TOTAL: $802,576

Visitors to CourageousParentsNetwork.org

Because of our donors, the CPN website resources are available 24/7 at no cost to families or clinicians. In 2022, 89,690 unique individuals visited CPN.org, there were 258,706 page views, and 254,100 video views. Meanwhile, some caregivers and clinicians chose to register with CPN and in 2022, membership rose to include 2,274 family members and 2,779 clinician members.

89,690 unique individuals visited CPN.org

258,706 page views on CPN.org

254,100 video views on CPN.org

Sharing Courageous Parents Network Ideas and Perspectives

CPN’s reputation as a thought leader and trustworthy voice for the parent experience grows year after year. A long-tail, positive effect of the recent rise of distance learning is that clinician and patient groups invite CPN to present virtually, allowing us to reach many more people on topics relating to pediatric palliative care, shared decision-making, important interventions (e.g., clinical trial), fostering “good parent” beliefs, and bereavement. In 2022, CPN reached 940 clinicians and 360 affected family members in patient groups. Our team also regularly contributes and/or co-authors articles and studies for important publications in the field.

Surveying Our Caregivers and Clinicians

CPN partnered with City Square Associates to collect information and feedback from clinicians and parents on personal experiences and engagement with CPN, with the intention of assessing CPN’s performance relative to our objectives as well as help CPN move forward with the best resources for families and clinicians. Key findings include:

Parents and caregivers reported that: as a result of interacting with CPN resources they feel less alone

CPN helped them understand their own grief they became more knowledgeable about palliative care

Clinicians reported that CPN is most valued as a window into the family experience, with:

60% 53% saying they strongly agree that CPN taught them about the family experience reporting that CPN made them a better resource for patient families as they move through the illness journey and are faced with difficult decisions reporting that CPN made them a better resource for patient families as they received a difficult diagnosis and got their bearings