1. Section Editor(s): Kelly, Michelle M. PhD, CRNP

Article Content

I am delighted to serve as guest editor during the 40th Anniversary year for MCN: The American Journal of Maternal Child Nursing. Over the past few years I have been privileged to I work with and learn from editors Drs. Margaret Comerford Freda and Kathleen R. Simpson.


This issue centers on children with chronic conditions. This topic is special to me, combining my practice disciplines and passions. Initially a pediatric intensive care unit nurse, then a pediatric nurse practitioner, I have cared for children experiencing acute life-changing health crises and chronic health challenges. When my practice setting moved to the NICU as a neonatal nurse practitioner, I interacted with families at the very beginning of life-supporting parents who were hoping and praying that their child would survive the premature birth, congenital anomaly, or perinatal event that required specialized NICU care. As those children and families moved through their NICU course, my pediatric background came full-circle as we began to focus on discharge and their child's potential health challenges.


Nurses are integral in the lives of children and families and it is critical that all members of the healthcare team remember that being diagnosed with a chronic condition and being a child with a special healthcare need are not equivalent labels. According to the National Survey of Children's Health (NSCH) conducted in 2011/2012 with families of children 0 to 17 years of age, 19.8% of children in the United States qualify as having a special heathcare need. This population compromises a significant portion of American children and is much smaller than the number of children diagnosed with a chronic condition in the United States. In 2007, the NSCH reported the incidence of chronic conditions in children as ranging from 43% to 54% depending on the chronic conditions included in the calculations.


Children with chronic illness and special healthcare needs are dynamic individuals with very important jobs: going to school, interacting with their peers, and developing skills necessary for transition to adulthood. Two such conditions, juvenile idiopathic arthritis and congenital heart disease, represent lifelong conditions that may vary in severity and consequence both in an individual child's life, and from child to child. Understanding needs of children with these conditions is highlighted in the continuing education articles in this issue of MCN.


Families and healthcare providers must appreciate that maximizing our children's potential goes beyond disease management. When evaluating treatment outcomes, consider including self-report health-related quality-of-life measures, as well as parent-proxy measures. Health-related quality of life quantifies more than severity of an illness or condition, it considers how that condition affects physical, social, emotional, and behavioral facets of life, and for children, this includes their school and peer activities. In this issue of MCN, health-related quality of life as an outcome measure is presented from a historical and research perspective.


Regardless of the designation, children with chronic health conditions or special healthcare needs are prevalent in our clinical settings. They are children we know well and ones whose families need our support and guidance as they help their child navigate their world. As nurses we are compelled to advocate for ways to minimize family burden and maximize child potential. Support families beyond your setting by getting involved in professional organizations and organizations that support your specialty, in local schools and public health. Seek continuing education that will further prepare you for the needs of your patient population. Be ready, willing, and able to answer questions from families about resources in your community. Conversations between nurses and families often echo in the minds of caregivers long after they have left you.


Enjoy this issue!




National Survey of Children's Health. (2011/2012 and 2007). Data query from Child Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health. Retrieved July 15, 2014, from