Editor’s Note: Dr. Claire Castellano (she/her/hers) is a resident physician in pediatrics at the Children’s Hospital of Philadelphia. In addition to her MD, Claire has a Master’s in Public Health, focusing on global epidemiology. Claire hopes to combine her interests in medical education and global health in her career as a pediatrician.
-Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics
The medical home model of care (MHMC) is “an approach to providing comprehensive and high-quality primary care” that is accessible, family centered, continuous, comprehensive, coordinated with specialized services, compassionate, and culturally effective.
Although all children benefit from such a care model, the initial focus was for children with special healthcare needs (CSHCN). However, CSHCN encompasses a vast group of children with a diversity of specific needs. Children who are deaf or hard of hearing (DHH) represent a particular cohort whose needs may not be met by this model.
Dr. Dylan Chan and Inderpreet Khalsa, MS, at the University of California-San Francisco investigated how the DHH community interacts with components of the MHMC in an article that is being released early in Pediatrics this week (10.1542/peds.2023-063929).
The authors analyzed 2016–2022 data from the National Survey of Children’s Health (NSCH), a nationally representative, cross-sectional survey about US children’s physical and mental health.
The NCSH captures information on 5 components of a MHMC:
- Having a personal doctor/nurse
- Having a location for primary and sick care
- Experiencing family-centered care
- Obtaining referrals without difficulty
- Accessing and receiving care coordination
The authors compared prevalence of receiving MHMC for children who are DHH (1.3% of the total study population) with all children and other CHCN. They found the following:
- Children who were DHH were 26% less likely to meet all criteria for MHMC compared to those who were not DHH
- Children who were DHH and had other SHCN were 29% less likely to meet all criteria for MHMC compared to other CHSCN
- Families of children who were DHH received specific aspects of the medical home at lower prevalence compared to families who did not have children with DHH:
- Experiencing family-centered care
- Obtaining referrals without difficulty
- Accessing and receiving care coordination
Taken together, even if children who are DHH have a provider and location for medical care, there are significant disparities in referring families and having families access the resources and specialties they need. We can intervene on multiple levels to better support our DHH patients and their families:
- Provider Support and Education: Pediatricians need both more time for visits with families of children who are DHH and more formalized training about the necessary interventions and follow-up care that DHH patients need. For instance, now that I have a patient who is DHH, I would have loved to have had some formal training in American Sign Language in medical school.
- Family Support and Education: Many parents of children who are DHH are typical-hearing and may need additional support around what resources exist for their child.
- Institutional Level Care Coordination: A failed newborn screen should automatically trigger referrals and coordination to quickly coordinate care, from audiology appointments to early intervention referrals. There is also an opportunity to have multidisciplinary clinics to have various specialties in the same location and ease access to needed referrals.
We must continue to address the needs identified in this important study to better support families with children who are DHH—and all children—so that they can access and receive the care they need.
