The population of adults with congenital heart disease (CHD) is rapidly growing as extensive improvements in congenital cardiology and heart surgery have created new groups of children surviving into adolescence and adulthood. With improvement of clinical outcomes, involvement of nurses in research and quality initiatives has expanded over the past decades. Such initiatives aim to improve the provision of evidence-based nursing care for patients with CHD along their life span.
The role of a clinical nurse specialist is described to be foundational for the delivery of high-quality, effective, compassionate health care, where provision of interdisciplinary clinical practice is closely linked to the newest research insights. The role of advanced practice nurses (APN) is recognized to be a cornerstone in the provision of holistic patient care. The task set of such advanced nursing roles include performance of comprehensive assessment of patients’ needs, counseling activities regarding education, employment, family planning, and supporting the development of self-management and coping strategies.
In order to provide patient-tailored care, a comprehensive understanding of patients’ needs is crucial to manage the diversity and complexity of CHD care and to support the unique clinical needs and challenges encountered by this patient population. The main topics investigated by nursing research over the recent years were CHD lived experiences, quality of life, parenting of patients, and transitional care. Although the field of nursing research expanded tremendously over the past decades, important gaps in our knowledge and evidence base remain, however, pertinent. Further empirical investigations are mandatory to gain a full understanding of important aspects of effective nursing care for patients with CHD and enlarge the evidence-base supporting quality improvement initiatives.
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