Survey of Parents of Children with Special Health Needs

Smiling girl having a medical appointment at her doctor's office with a support of her single mother.

Problem

Efforts to improve health care for children and youth with special health care needs require more and better data.

Nearly 20 percent of the pediatric population is comprised of children and youth with special health care needs (CYSHCN). However, data on their experiences accessing various types of health care services and resources is lacking. The Lucile Packard Foundation for Children’s Health wanted to bridge this gap to better inform their efforts to improve systems of care for CYSHCN and their families.

Solution

NORC conducted a national survey and focus groups of parents of CYSHCN to better understand the challenges they face.

NORC collaborated with the Lucile Packard Foundation for Children’s Health to survey parents with and without children and young adults with special health care needs and conduct focus groups.

The survey was developed with input gathered through a series of listening sessions with stakeholders in the CYSHCN health care field and conducted using NORC’s probability-based, nationally representative AmeriSpeak panel.

The survey asked parents questions from a broad range of topics, including experiences accessing health care, family supports, perceived quality of care, barriers to receiving care, and the impacts of those barriers. The target population consisted of parents whose children were under the age of 26. Data collection was conducted via telephone and online, with the survey available in both English and Spanish.

To gain a detailed and actionable understanding of the challenges faced by families and caregivers of CYSHCN, NORC conducted four focus groups with selected survey participants.

Result

Our research found that CYSHCN have worse health care experiences than other children.

The results of the survey showed that across a range of different measures, CYSHCN and their families have lower levels of access for the health care services they need compared to children without special health care needs.

CYSHCN receive less of the care they need across every type of health care service we asked about as compared to children without special health care needs.
- There was a range in levels of unmet need across services, with 11 percent of CYSHCN not receiving all the preventive check-ups they needed and 55 percent of families of CYSHCN not receiving all the respite care they need.
- One in four CYSHCN did not receive all the mental health care they needed.
- Thirty-seven percent of CYSHCN did not receive all the home health care they needed.

CYSHCN face a greater number of barriers to health care services than other children.
- CYSHCN (30 percent) were twice as likely than other children (15 percent) to experience barriers to preventive check-ups, such as long wait times for appointments.
- CYSHCN (38 percent) are more than twice as likely than other children to experience barriers to mental health care, such as insurance not covering the services.
- Forty-eight percent of CYSHCN who needed medical equipment or devices experienced at least one barrier to access, with the most common barrier not being able to get a referral from a doctor or health plan to receive the equipment or device.

While children in general are negatively impacted when they do not receive the health care services that they need, the consequences are worse for CYSHCN.
- Thirty-one percent of CYSHCN who did not receive all the specialty care they needed experienced a delay in getting the right diagnosis for their health condition.
- Twenty-three percent of CYSHCN who did not receive all the mental health care they needed experienced worsening symptoms.
- Fifty-two percent of families of CYSHCN who did not receive all the respite services they needed experienced higher stress as a result.

Black and Hispanic CYSHCN and their families access less of the care they need, experience more barriers, and often face greater impacts of missed care.
- Hispanic CYSHCN (58 percent) and Black CYSHCN (37 percent) did not receive all the home health care they needed.
- Hispanic CYSHCN (72 percent) and Black CYSHCN (52 percent) experienced at least one barrier in accessing needed medical equipment or devices.
- Twenty-four percent of Hispanic CYSHCN developed a new symptom or health complication as a result of not receiving all the specialty care they needed.

These findings will inform the foundation’s ongoing grantmaking and advocacy with the goal of improving the health care system to work better for CYSHCN and their families.