Amy J. Houtrow, MD, PhD, MPH, and University of Utah Research Team Study Perceived Disability-Based Discrimination in Health Care for Children with Medical Complexity
October 5, 2023
Amy J. Houtrow, MD, PhD, MPH, professor and vice chair, UPMC Department of Physical Medicine and Rehabilitation and chief, Pediatric Rehabilitation Medicine Services, UPMC Children’s Hospital of Pittsburgh, published a recent study in Pediatrics, along with several colleagues from the University of Utah School of Medicine.
The study, “Perceived Disability-Based Discrimination in Health Care for Children with Medical Complexity,” aims to gather an understanding of disability-based discrimination in pediatrics in order to drive change and improve care.
Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability.
The research team conducted in-depth, semi-structured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care.
Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care.
Three themes described drivers of discrimination:
- Lack of clinician knowledge
- Clinician apathy
- Clinician assumptions
Three themes described manifestations of discrimination:
- Limited accessibility to care
- Substandard care
- Dehumanization
Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities.
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All study contributors
Stefanie G. Ames, MD
Rebecca K. Delaney, PhD
Amy J. Houtrow, MD, PhD, MPH
Claudia Delgado-Corcoran, MD
Justin Alvey, MD
Melissa H. Watt, PhD
Nancy Murphy, MD
