Medical Neglect in Childhood

Abstract

This introduction provides an overview to the special issues on medical neglect in childhood guest edited by Barbara L. Knox, MD, FAAP, Clinical Professor of Pediatrics, University of Washington School of Medicine, The Children’s Hospital at Providence, Medical Director of Alaska Child Abuse Response and Evaluation Services; Randell C. Alexander, MD, PhD, FAAP, Professor and Chief, Division of Child Protection and Forensic Pediatrics at the University of Florida-Jacksonville; Francois M. Luyet, MD, Clinical Assistant Professor, University of Wisconsin School of Medicine and Public Health; and Debra D. Esernio-Jenssen, Professor of Pediatrics at the Morsani College of Medicine USF Health in Tampa, Florida and the Chief of Child Protection Medicine at Lehigh Valley Reilly Children’s Hospital. Ten articles are included in this special edition aiming to explore the role of medical neglect in situations commonly encountered by practitioners.

In the United States, there were 678,000 officially confirmed victims of child maltreatment in 2018. Of these, 60.8% were due to neglect, which is 412, 224 children. Of the 1770 deaths noted, 72.8% were neglect and 8.1% due to medical neglect (U.S. Department of Health and Human Services, 2020). These are just the known cases; the actual numbers are probably 3–4 times higher.

Identifying medical neglect may be difficult and is sometimes somewhat subjective, as assessing what meets a minimal standard of heath care that a parent must provide for a child may depend on state laws and medical practices and can be complicated by socio-economic and/or cultural factors. This special edition aims to help general pediatricians and child abuse specialists alike with various situations when medical neglect is a likely contributor to a child’s health problem.

In children affected by a chronic condition (asthma, diabetes, HIV), medical neglect can tip the balance between a good quality of life and poor health, multiple emergency department visits, and a possible fatal outcome. Four articles in this special issue deal with this question: Barbara Knox and colleagues focus on poor asthma control, Ryan Collier and Kelly Cronin-Komatz examine the impact of medical neglect on the quality of life of medically complex patients, Kathy Dully and colleagues address the problems faced by children with diabetes, and Sheryl Henderson and colleagues investigate the failure of HIV prophylaxis and treatment.

Two articles deal with neglect associated with the daily care of every child: Alexander Burford, Randell Alexander and Carol Lilly discuss the extremes of nutrition, from starvation to obesity, and Lora Spiller and colleagues examine the role of medical neglect in poor dental hygiene.

Three articles address topics where confrontation between the medical practitioner and parents are likely to arise: Paul Offit and Debra Esernio-Jenssen deal with the refusal of vaccination, Lori Frasier and colleagues examine the issue of parents who refuse testing or treatment, and John Sterling examines the fine line between neglect and delay in medical care. One article by John Wright, Rachel Heinze and Mary Ellen Wright addresses recommendations for the medical provider in the pediatric setting when addressing the problem of separation/divorce with high conflict custody disputes and the overlay with medical neglect.

The longest article in this special issue is authored by Rita Swan. She provides an invaluable guide to the thorny topic of medical neglect under the cover of religious observance. Almost every practitioner will be faced with this problem at least once in their career, and a basic knowledge of the parents’ religious beliefs and how it interferes with medical care is fundamental in dealing adequately with this issue.

Practitioners often deal with less than optimal medical care issues, and struggle with instances when this crosses into preventable harm to a child. By recognizing how such cases present and how they might be approached, this special issue hopes to allay some of the concerns and challenges that health care workers periodically face.