Courageous Parents Network

In 2022, cpn prioritized: 1.development of the journey map for families of children with serious neurological impairment 2.development of content focused on issues of health equity and bias 3.outreach to pediatric providers, patient disease groups and the rare disease industry 4.development and production of original content and programming for caregivers and clinicians serving seriously ill children 5.development and launch of the new clinician portal activities and accomplishments during this time (1)digital journey map for Parents and providers of children with sni content development: during the past year, cpn has completed content development of journey map for Parents and providers of children with serious neurological impairment. The two lead authors of the medical track - dr julie hauer and cpn's senior producer and (experienced) parent, jennifer siedman -- collaborated to shape the medical information into parent-forward language. Nine palliative-minded specialists from hospitals across the country, as well as two Parents of children with sni reviewed the drafts, and it was all edited by cpn's director of communications for consistency. Two Parents - cpn's blyth lord and contributing parent advisor, sarah casey - adapted cpn content for the social-emotional track and carol trager reviewed for consistency. Platform development: cpn's lead developer completed the programming of the publishing platform, as well as design. Looking ahead - may-june: following a well-received presentation about the journey map at aahpm in march 2023, cpn will be beta-testing of the tool with volunteer Parents and clinicians. We anticipate launching the journey map nationally in september 2023. (2) diversity and inclusion content "in spring 2022, we conducted two focus groups with black and hispanic Parents (all mothers) of children. "in november-march, we video interviewed four african-american Parents and three clinicians of color, and are publishing their videos to the cpn library. We are featuring them specifically in monthly communications to parent and clinician members, and in specific presentations to clinician audiences. The theme of parent agency and advocacy for Parents of color is an important theme that comes through in both the parent and clinician interviews, and where possible, cpn is connecting the two perspectives. For example, a parent of color will acknowledge that she feels she has to behave a certain way for clinicians to listen to her and provide good care to her child, and a physician will observe that this is an unfair, unhealthy and shameful burden to put on these Parents who are already in a vulnerable situation. "looking ahead: cpn will meet with its equity and inclusion advisory board to consider how we might adapt the parent and clinician videos for use in clinician training. (3) ongoing outreach and communications the primary channels to reach Parents and caregivers of children living with serious illness is through live presentations to clinicians and to patient organizations, and direct to individuals through email communications to membership and via social media. "in august 2022, pediatric psychologist chrissy salley joined as cpn's director of clinician outreach and engagement to reach more non-palliative clinicians with cpn as a resource to 'help them be a better resource to their patient families.' Dr. salley and executive director blyth lord are working to build collaborations with professional organizations as a channel to reach physicians, nurses, nps, social workers and pediatric psychologists. In 2023, cpn has become an official liaison to the aap's section on hospice and palliative medicine. Cpn's director of family and industry engagement, jennifer siedman, continues to network with patient disease groups, positioning cpn as a resource to help them further support their patient families. ?cpn's monthly social media efforts across twitter, facebook, instagram and linkedin have continued as we evolve our voice for 'thought leadership- and engagement. Live presentations - in-person and via zoom 2022 parmenter parent 10 parmenter clinician 12/7/2022 columbia critical care, hospital med, pall care 32 12/5/2022 msk psychosocial team 12 11/29/2022 st. mary's hospital (md's and nurses invite, only psychosocial attended) 7 11/29/2022 clinical trial guide (website) 11/29/2022 duchenne parent community 20 global genes blogs - 2 11/21/2022 st. mary's hospital (all) 15 11/17/2022 asgct 32 11/16/2022 national society genetic counselors 60 11/20/2022 div. 54 pall care sig newsletter 110 11/10/2022 inpcs 52 10/27/2022 pediatric residents - holtz, miami 30 10/11/2022 bridges program (transitions to adulhood)20 9/23/2022 pediatric psychology webinar 80 9/23/2022 siriusxm doctor radio: kids??? 9/13/2022 global genes 120 7/7/2022 cure sanfilippo 118 6/23/2022 cdls 14