Guide for Advanced Nursing Care of the Adult with Congenital Heart Disease

The aim of this book is to provide one central resource for nurses within the adult spectrum of life-long congenital heart disease care who are seeking expert guidance for their practice, regardless of clinical setting. Over the past 50 years, advances in surgical techniques and medical therapies have drastically improved the number of congenital heart disease patients surviving into adulthood, with the result being that there are now more adults then children living with congenital heart disease. In the past three decades, recognition of this new cardiology subspecialty has given way to formalized programs, standards of care, and multidisciplinary expertise. Indeed Nursing care of adult patients with congenital heart disease (ACHD) is a relatively new medical subspecialty with limited knowledge and guidance available and also an important component of the multidisciplinary care team. Nursing care of the ACHD encompasses a holistic approach to the physical, psychological, social, and spiritual wellbeing of these unique individuals across their lifespan. Understanding the intricacies for the various heterogeneous defect types, the transition from pediatric to adult care, the unique educational and self-care needs, life-events such as pregnancy/reproduction, advanced heart failure, and end-of-life care helps prepare the nurse caring for the ACHD patient. Nurses as a first point of care for the ACHD patients play a pivotal role in the education and empowerment of the ACHD patient population and provide an invaluable role in the multidisciplinary team and with this guide nurses can feel confident in the quality of the care they provide. 

This book aims to introduce nursing focused care to wider audiences, nurses, medical technicians, and physicians who are involved in the management and treatment of ACHD patients. Improving care and the quality of life for adult congenital heart disease patients with a multidisciplinary team-based approach, including nursing care, should be a central goal for all ACHD programs. 

Serena Francesca Flocco, RN, MSC, is a tutor at nursing degree course at University of Milan, section IRCCS Policlinico San Donato and she is an adjunct professor in the undergraduate nursing program at the University of Milan and the University of Pavia. Additionally, she is a nurse practitioner with over 23 years of experience caring for children and adults with congenital heart disease. She is also the coordinator for The Adult Congenital Heart Program at IRCCS Policlinico San Donato, a Nursing National Coordinator at the Italian Society of Pediatric Cardiology (SICP), and a Lead Nursing Scientific Projects “AICCA Onlus” (Associazione italiana dei Cardiopatici Congeniti Adulti).

Hajar Habibi Bsc (Hons) in Adult Nursing, MSc Cardio- Respiratory Nursing at Imperial College London. She is the Lead Adult Congenital Heart Disease (ACHD) Clinical Nurse Specialist at The Royal Brompton and Harefield Hospital in London, UK.

She worked within the cardiology and cardiac surgery since 2007, and initially worked at the Royal Brompton Hospital, in cardiology and Adult congenital heart disease (ACHD/Paul wood ward) unit. In 2011 she moved to work at the Guys’ and St Thomas’ Hospital (London) on the cardiology and cardiac surgery wards as a Clinical Nurse specialist (CNS) within the ACHD specialty for over 9 years. She worked as a clinical nurse specialist, surgical nurse case manager and lead for transition for young adults with congenital heart disease (transferring care from paediatric into adult setting).

She hosted various national meeting sharing information and best practice between team members. This collaboration and communication through regular network meetings as well as national clinical meetings helped to provide continuous service developments for patients. She also presented nationally and internationally on the issues relevant to the congenital heart disease service. She is part of Pan-London faculty for providing education and training to national and international nurses. She published nationally and international on the care of adult congenital heart disease and is an honorary lecturer at Imperial college London

Federica Dellafiore,  RN, MSC, Ph.D., is a Research Fellow at the University of Pavia (Italy), in the Department of Public Health, Experimental and Forensic Medicine, Section of Hygiene. In addition, she is an Adjunct Professor at the University of Pavia and University of Milan. Recently, she works in a research hospital (i.e. Policlinico San Donato) aimed to implement innovative care for cardiovascular diseases, serving as deputy head of the Health Professions Research and Development Unit. The main aim of the unit where she works is to sustain the allied professions' scientific production, with particular attention to boosting a tailored and evidence-based care delivery. Her program of research and clinical interests include chronic and life-limiting illnesses, such as Congenital Heart Disease, Heart Failure, and Diabetes. To date, she is studying primary care, health-promoting, and developing a research project on family and community nurses. She is also highly involved in several joined programs with the department of congenital heart disease in Policlinico San Donato, the Italian Association of patients with congenital heart disease (AICCA), and the Italian Scientific Society of Pediatric Cardiology (SICP). 

Christina Sillman, MSN, AGACNP-BC works at the Adult Congenital Heart Disease Program,Sutter Heart and Vascular Institute, in Sacramento,USA. She is a nurse practitioner with over 10 years of experience caring for children and adults with congenital heart disease. For the past seven years, she has worked as the nurse coordinator for The Adult Congenital Heart Program at Stanford before finishing her advanced degree as an acute care nurse practitioner. Currently, she is an adult congenital heart disease nurse practitioner at the Sutter Adult Congenital Heart Disease Program in Sacramento, California, USA. As an adult congenital heart disease patient herself, she is passionate about advancing the field of adult congenital cardiology and providing exceptional care to all patients with congenital heart disease.