Challenges Faced by Different Types of Adults Caring for Children with Special Health Care Needs

Background. While all caregivers face stressors in addition to caregiving for a child with special healthcare needs (CSHCN), the level and extent of these stresses can vary depending on the relationship between caregiver and child. We describe the variations in caregiving challenges among different types of caregivers for CSHCN.

Methods. Data were gathered from care assessments of 2,270 children in Texas Medicaid in 2010. The form includes questions on the status of the child and their caregiver. The role of the caregiver was either described as parent (88.1%), grandparent (6.7%), other family member (1.0%) or other adult (e.g. foster, guardian, family friend) (4.2%).

Results. Parents (83%) and other adults (89%) had higher rates of providing care for additional children compared to their counterparts. Other adults (77%) were more likely to care for an additional child with special healthcare needs. Grandparents were more likely to also be caring for an impaired or disabled adult (18%) and have physical limitations or disabilities that prevent them from assisting the child with tasks (69%). Other adults were more likely to have children with disruptive behavior disorder (24%), intellectual disability (72%) or mood disorders (34%) in their care. Relatedly, children under the care of other adults or other family members also had higher frequencies of problematic behaviors.

Conclusions. Understanding the challenges faced by the primary caregivers is an important part of understanding the child’s needs holistically. It can also be used to assist in providing families with support services and resources tailored to their needs.