Parents and families as partners in the care of pediatric cardiology patients

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Abstract

The concept of patient- and family-centered care has its roots deep in the movement to improve care for special-needs children and in the tradition of pediatricians working with the families of their patients. Parents of pediatric cardiology patients can play a significant role in their children's care and often act as quarterbacks by coordinating multiple specialists and treatments in a system that can be fraught with hazards and poor communication. The medical system provides few tools to aid parents in this “partnership” process. We propose that parents be given specific resources to help them navigate the healthcare system and thereby provide better support for their children, and that pediatric cardiologists and their staffs use the principles of patient- and family-centered care to help parents become more effective advocates for their children.

Introduction

Over the past half century, the concept of patient- and family-centered care has led to profound changes in the patient's experience of hospitalization, and in particular the experience of the hospitalized child. Many remember the distress that was induced when parents were not allowed to stay with children in the hospital and many were asked to leave the room if a child was to have an even minimally invasive procedure. Adult patients have also been subjected to stringent rules around visiting hours, and at times were routinely denied information about their own medical condition.

Under various guises, patient- and family-centered care has chipped away at this paternalistic edifice for more than 50 years. The concept of informed consent gave patients a legal say in their own treatment beginning in the late 1950s [1]. In response to research by James Robertson and others showing the psychological damage children experienced when separated from their parents, 24-hour visitation and other family-oriented policies for children began not long thereafter [2], [3]. The entire concept of patient-centeredness was brought front and center by the 2001 Institute of Medicine report, Crossing the Quality Chasm, which named patient-centered care as one of the six fundamental aims in its blueprint for improving healthcare [4]. Pushed forward by the Institute for Patient and Family-Centered Care, the Institute of Healthcare Improvement, the Joint Commission, and many other organizations, this concept is now part of the mainstream lexicon of patient safety [5], [6], [7], [8], [9].

In this article, we look at the role of patient- and family-centered care in the treatment of pediatric cardiology patients. Parents of seriously ill children report feeling helpless and out of control when their children face an uncertain prognosis or a prolonged hospitalization [10]. But while numerous works focus on providing support to parents of critically ill children, few look at providing patients and families with strategies and information to help them maintain control over their well-being. It is our view that parents' sense of helplessness, as well as their children's medical outcomes, can be improved not only by training parents about their children's medical condition, but by straightforward information parents can use to improve their child's situation within the healthcare system.

Section snippets

Family-centered care and parent advocacy

A significant reason for the advance of the concept of family-centered care has been its active promotion by parents of special-needs children. Early changes in healthcare policies were part of a larger package of consumer-backed reforms that included keeping children with disabilities home with their families instead of in institutions. Key to this effort in the United States was legislation such as the 1975 federal special education law now called the IDEA Act, the 1981 creation of Medicaid

Parent advocacy in pediatric cardiology

Most parents and guardians of minor patients in pediatric cardiology view their role in their children's care as critical. “Heart parents” contribute to the child's medical care by virtue of their role as primary caregivers and their intimate knowledge of the child. In addition, the complexity of pediatric cardiology means that parents and guardians often play an even more important role. While each parent brings his or her own set of skills, experience, and knowledge to consultations regarding

Patient safety and patient advocacy

Few studies pertaining to communication with parents of seriously ill children refer directly to the aspect of medical care that lies at the core of some of parents' deepest fears — medical error. This is not an inconsequential omission. Two of the most notorious medical scandals of recent decades — the Bristol Royal Infirmary in England and the Winnipeg Health Sciences Centre in Canada — have involved preventable deaths in pediatric cardiology [36], [37], [38]. More generally, the literature

Areas in which parents and family can contribute to children's care

There is great interest among patients and families in ways to improve safety in hospitals. In this, they are encouraged by healthcare agencies such as the United States Agency for Healthcare Research and Quality and the Joint Commission, which caution patients to have an advocate with them and suggest questions to ask their healthcare providers [57], [58]. Numerous self-help books by both professionals and patients also advise patients on ways to avoid problems in their medical care [e.g., [59]

How physicians can facilitate patient advocacy

While few physicians would disagree that an informed patient is more likely than an uninformed one to thrive in the healthcare system, physicians face a delicate task in knowing how to deal with the varying needs and desires of individual families. Some areas in which physicians can employ family-centered strategies and help parents become stronger advocates for their children include ensuring that parents have the information they need; respecting the knowledge that parents and families can

Conclusions

Among the central principles of patient- and family-centered care are dignity and respect, information sharing, participation, shared decision-making, and collaboration. For many patients this is far from the current reality, a situation that creates fear, uncertainty, and unsafe conditions for patients. In recent years, pressure from governments, consumer advocacy groups, and regulatory agencies has steadily mounted for “soft” solutions, focused on patient-centered care, care coordination, and

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