Integrating Palliative Aware Care for Caregivers of Children Living with Serious Medical Conditions
Children and families affected by serious medical conditions face considerable challenges in navigating the medical and psychosocial aspects of complex chronic illness management. They experience anticipatory grief, isolation, a loss of agency and control, a fear of being misunderstood by their child’s medical team, the burden of decision-making and a fear of decisional regret, all while seeking to be a ‘good parent’ to their child. Palliative medicine principles including an emphasis on serious illness communication and clarification of family values have significant positive impacts on families as they find their way through each step of their journey. While specialty pediatric palliative medicine is available at many institutions, there is also a need to improve palliative-aware skills of all clinicians and expand parent support resources. Freely available digital tools from Courageous Parents Network (CPN; CourageousParentsNetwork.Org) are well-suited to fill this gap, serving as concrete clinical resources for clinicians to help provide anticipatory guidance, as well as a source of perspective for families who care for children with serious medical conditions. These resources are collaboratively developed by clinicians -- who root the content in evidence and clinical expertise -- and parents who add human dimension and illuminate the content with their lived experience as caregivers to their child.
Co-led by two parent caregivers and a pediatric psychologist, Chrissy Salley, Ph.D., CPN’s Director of Clinician Engagement & Outreach, this session will begin with a brief overview of the invisible psychosocial impact of pediatric illness on parent caregivers and the vital role of primary palliative care to fortify them. It will transition to a demonstration of CourageousParentsNework.org, including the Clinician/Educator Portal. Participants will then be divided into 3 breakout rooms (or more if needed), each focusing on a different case. In each group, participants will consider the needs of the child and parents, how best to clinically meet those needs, and how to incorporate the Courageous Parents Network resources into communications and care. These resources will be utilized to help answer 3 key questions about the case. The session will conclude with the participants reconvening to share their primary takeaways and ask questions.
This session addresses the summit theme by demonstrating how parent engagement and collaboration for resource and program design engages both caregivers and clinicians as true collaborators in the shared enterprise to provide loving care to children with medical complexity.
Learning objectives:
- As a result of this session, participants will be able to:
o Improve awareness of the patient and family experience of caring for a child with a serious medical condition
o Provide meaningful and patient-centered anticipatory guidance to families navigating both medical and psychosocial challenges related to disease
o Navigate novel tools to support serious illness communication
In support of improving patient care, this activity is planned and implemented by The National Center for Interprofessional Practice and Education Office of Interprofessional Continuing Professional Development (National Center OICPD). The National Center OICPD is accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.
As a Jointly Accredited Provider, the National Center is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. The National Center maintains responsibility for this course. Social workers completing this course receive continuing education credits.
The National Center OICPD (JA#: 4008105) is approved by the Board of Certification, Inc. to provide continuing education to Athletic Trainers (ATs).
This activity was planned by and for the healthcare team, and learners will receive Interprofessional Continuing Education (IPCE) credit for learning and change.
Physicians: The National Center for Interprofessional Practice and Education designates this live activity for AMA PRA Category 1 Credits™. Physicians should only claim credit commensurate with their participation.
Physician Assistants: The American Academy of Physician Assistants (AAPA) accepts credit from organizations accredited by the ACCME.
Nurses: Participants will be awarded contact hours of credit for attendance at this workshop.
Nurse Practitioners: The American Academy of Nurse Practitioners Certification Program (AANPCP) accepts credit from organizations accredited by the ACCME and ANCC.
Pharmacists and Pharmacy Technicians: This activity is approved for contact hours.
Athletic Trainers: This program is eligible for Category A hours/CEUs. ATs should claim only those hours actually spent in the educational program.
Social Workers: As a Jointly Accredited Organization, the National Center is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. The National Center maintains responsibility for this course. Social workers completing this course receive continuing education credits.
IPCE: This activity was planned by and for the healthcare team, and learners will receive Interprofessional Continuing Education (IPCE) credits for learning and change.
Learners can claim CE credit by completing the Daily Evaluation.