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Engaging Patients and Families in their Pediatric and Congenital Cardiac Care

Amy Basken, MS, Rebeka Acosta, BCPA, Jodi Smith, Esq, Clarerita Higgins, RN, Shuntae Williams, PhD, MSRS, Jennifer Weiner, Adam Schneider, RN, BSN, Keila N. Lopez, MD, MPH, S. Ram Kumar, MD, PhD, Jeffrey P. Jacobs, MD, FACS,FACC,FCCP

Abstract

Patient- and family-centered care can help achieve multiple objectives:

  • Improve outcomes, experience, and satisfaction
  • Streamline communication
  • Increase professional satisfaction
  • Decrease healthcare costs
  • Lead to more effective use of healthcare resources

And, patient- and family-engaged care actually takes patient- and family-centered care to a higher and better level.

Engaging patients and families is essential to improving both short and long-term outcomes. Effective communication and comprehensive understanding of the needs of the patients and their families is required. Working together, surgeons and patients are a powerful team!

This chapter will focus on the important topic of engaging patients and families in their care. This chapter will discuss the following six topics:

  • Empathy;
  • Implicit Bias, Discrimination, and Racism;
  • Social Determinants of Health and Health Disparities;
  • Health Literacy;
  • Transparency and Outcomes; and
  • Collaboration and Advocacy.

The authors of this chapter include several leaders from the following two organizations:

Conquering CHD

Conquering CHD was originally founded as the Pediatric Congenital Heart Association (PCHA) in 2013, with the objective of filling a niche as the voice of the congenital heart patient and family. In 2020, in order to be more inclusive both culturally and across the lifespan, PCHA changed their name to Conquering CHD. Conquering CHD advocates for pediatric and congenital cardiac care at the local, regional, and national level, and simultaneously empowers patients and families in their local communities.

  • Amy Basken is the Senior Director of Programs for Conquering CHD.
  • Rebeka Acosta is the Education Director for Conquering CHD.
  • Jennifer Weiner is the Adult Congenital Heart Disease Director (ACHD Director) for Conquering CHD
  • Rita Higgins, RN is a member of the Development Committee for Conquering CHD.

Mended Hearts

Mended Hearts is a national and community-based non-profit organization that has been offering the gift of hope to heart disease patients, their families and caregivers. To offer this hope Mended Hearts provides a variety of programs.

  • The Mission Statement of Mended Hearts is “to inspire hope and improve the quality of life of heart patients and their families through ongoing peer-to-peer support, education, and advocacy”.
  • The Vision Statement of Mended Hearts is “to be the premier nationwide resource and peer-to-peer support network for all heart patients and families affected by Heart Disease across the life span”.
  • Jodi Smith Lemacks, Esq. is the National Program Director of Mended Little Hearts.

The panel of authors of this chapter provide a unique and important perspective about the important topic of engaging patients and families in their pediatric and congenital cardiac care.

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Last updated: September 1, 2021