Parental Stress
Office of Children with Special Health Care Needs
How caregiving for children with special health care needs impacts parents
Raising a child with special health care needs (CSHCN) can be especially demanding. Everyday tasks (such as appointments, school coordination, and managing finances) often take more time and energy. Across the US and in Utah, parents of CSHCN report more anxiety, burnout, and isolation than other parents.
This fact sheet uses data from the National Survey of Children’s Health to show the added pressure these families face. By understanding their challenges, communities and service providers can better support Utah families.
In Utah, 1 in 4 children—or about 223,000 children—have special health care needs. This means that nearly 1 in 3 families are caring for at least 1 child who needs extra medical, behavioral, or developmental support.Key takeaways
- In Utah, 1 in 4 children—or about 223,000 children— have special health care needs.
- CSHCN parents report experiencing more anxiety, burnout and isolation than other parents, and have limited support to help care for their child.
- There are many resources to help parents who have children with special health care needs.
Time demand on parents
Caring for a child with special health care needs requires significant time and attention. In Utah, nearly 3 in 10 CSHCN parents spend 5 or more hours each week providing medical care at home. More than half (52%) of CSHCN parents provide at least one hour of healthcare in their home each week compared to 41% of non-CSHCN parents. The added responsibility can create daily stress and reduce a family’s flexibility (see Figure 1).
Figure 1. More than half of CSHCN parents spend at least 1 hour per week providing healthcare to their child at home
Finding care is a struggle
It’s not just extra time—getting the right care is often difficult, too. Parents of CSHCN are more than three times as likely to experience stress trying to get services for their child (see Figure 2).
Figure 2. CSHCN parents are more likely to sometimes or usually feel frustrated in efforts to get services for their child than non-CSHCN parents
Caregiving can affect parents’ jobs
The extra hours spent providing care—and the time and stress involved in navigating service—can make it hard for parents to stay in the workforce. In Utah, about 1 in 6 families of CSHCN had a parent cut back hours at work, take leave, or leave a job altogether to care for their child. That’s 4 times the rate of other families.
Extra care costs more
Even when parents stay employed, the costs of care add up. Nearly 1 in 5 Utah families of CSHCN face medical or health-related financial strain—almost 3 times higher than other families (see Figure 3).
High levels of daily stress
The more complex a child’s needs, the more stress a parent tends to feel. From frequent medical visits to daily care, the pressure adds up. In Utah, only about 1 in 3 parents with more complex caregiving demands feel they are handling parenting “very well”—far fewer than other parents. They’re also more than 4 times as more likely to say they’re not managing well at all.
Parent health takes a hit
This ongoing stress does not just affect how parents feel—it also affects their health. While fathers report similar health regardless of their child’s needs, mothers caring for a child with special health care needs report worse mental and emotional health (see Figure 4).
Many parents still lack support
Most parents of children with special health care needs have someone to turn to for emotional support. However, more than 1 in 7 say they don’t have that kind of support at all. Even among those who do, many still feel isolated, alone, and misunderstood.
Medical homes help families thrive
A medical home is not a building—it’s a way of organizing care to meet your child’s health needs in a more coordinated and supportive way. It includes five key parts:
- A personal doctor
- A regular place to go when your child is sick
- Care that includes and respects the family
- Help getting needed referrals
- Support to coordinate your child’s care
This kind of care is linked to better health, fewer unmet needs, and less reliance on emergency rooms for children with special health care needs. Yet nearly half of families of CSHCN in Utah do not have a medical home. The Utah Department of Health and Human Services Integrated Services Program and the Utah Parent Center can help you find or strengthen your child’s medical home.
Resources for CSHCN families
Utah Parent Center
Offers resources and training to help families
manage the daily demands of caregiving
utahparentcenter.org
Utah Family Voices
Helps families navigate and access health care
and family support services
utahparentcenter.org/projects/ufv
Integrated Services Program
Provides care coordination, early screening, and
access to community-based services
familyhealth.utah.gov/cshcn/integrated-services-program/
Utah Kids Foundation
Offers information and support, medical supply
assistance, and community-building events
utahkidsfoundation.org
Contact us
Address:
195 North 1950 WestPO Box 144610
Salt Lake City, UT 84114-4610
Email:
Phone & Fax:
Phone: phone number (866) 818-7096 Fax: phone number (801) 323-1578 Monday thru Friday - 8:00 am to 5:00 pm