Family-centered care (FCC) is a partnership approach to health care decision-making between the family and health care provider. FCC is considered the standard of pediatric health care by many clinical practices, hospitals, and health care groups. Despite widespread endorsement, FCC continues to be insufficiently implemented into clinical practice. In this paper we enumerate the core principles of FCC in pediatric health care, describe recent advances applying FCC principles to clinical practice, and propose an agenda for practitioners, hospitals, and health care groups to translate FCC into improved health outcomes, health care delivery, and health care system transformation.

Americans' perceptions of childhood disability have changed dramatically over the past century, as have their ideas about health and illness, medical developments, threats to children's health and development, and expectations for child functioning. Neal Halfon, Amy Houtrow, Kandyce Larson, and Paul Newacheck examine how these changes have influenced the risk of poor health and disability and how recent policies to address the needs of children with disabilities have evolved. The authors examine the prevalence in the United States of childhood disability and of the conditions responsible for impairment, as well as trends in the prevalence of chronic conditions associated with disability. They find that childhood disability is increasing and that emotional, behavioral, and neurological disabilities are now more prevalent than physical impairments. They stress the importance of, and lack of progress in, improving socioeconomic disparities in disability prevalence, as well as the need for better measures and greater harmonization of data and data sources across different child-serving agencies and levels of government. They call on policy makers to strengthen existing data systems to advance understanding of the causes of childhood disabilities and guide the formulation of more strategic, responsive, and effective policies, programs, and interventions. The authors offer a new and forward-looking definition of childhood disability that reflects emerging and developmentally responsive notions of childhood health and disability. They highlight the relationship between health, functioning, and the environment; the gap in function between a child's abilities and the norm; and how that gap limits the child's ability to engage successfully with his or her world. Their definition also recognizes the dynamic nature of disability and how the experience of disability can be modified by the child's environment.

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this population remains vulnerable to underrecognition and undertreatment of pain. Barriers to treatment may include uncertainty in identifying pain along with limited experience and fear with the use of medications for pain treatment. Behavioral pain-assessment tools are reviewed in this clinical report, along with other strategies for monitoring pain after an intervention. Sources of pain in this population include acute-onset pain attributable to tissue injury or inflammation resulting in nociceptive pain, with pain then expected to resolve after treatment directed at the source. Other sources can result in chronic intermittent pain that, for many, occurs on a weekly to daily basis, commonly attributed to gastroesophageal reflux, spasticity, and hip subluxation. Most challenging are pain sources attributable to the impaired central nervous system, requiring empirical medication trials directed at causes that cannot be identified by diagnostic tests, such as central neuropathic pain. Interventions reviewed include integrative therapies and medications, such as gabapentinoids, tricyclic antidepressants, α-agonists, and opioids. This clinical report aims to address, with evidence-based guidance, the inherent challenges with the goal to improve comfort throughout life in this vulnerable group of children.

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