A new study by the researchers of the University of Rochester Medical Center (URMC) and Golisano Children’s Hospital has found that parents of children with the most complex medical conditions reported poor or fair mental health. Also, they struggled to find community help.
The study, titled “A National Mental Health Profile of Parents of Children with Medical Complexity,” was published in the journal of the American Academy of Pediatrics (AAP).
The researchers examined parent-reported data from the National Survey of Children’s Health, according to Science Daily. They compared three groups – households of children with medical complexity (CMC); households of noncomplex children with special health care needs; households of children without special health care needs.
Children with CMC tend to have multiple chronic medical conditions and disabilities, requiring frequent health care services. Cerebral palsy, congenital heart defects, and genetic disorders are common CMC.
The researchers found that at least 20% of parents of CMC reported poor or fair mental health. They also found that 36% of parents of CMC reported not knowing where to find help in their community while encountering such difficulties.
Lead author Dr. Nathaniel Bayer said the study findings suggest that “health care systems should be proactive in trying to serve parents of CMC and provide support resources, and that mental health should be prioritized,”
Dr. Bayer is an assistant professor and pediatric hospitalist at Golisano Children’s Hospital in the URMC Department of Pediatrics.
“As we partner with these families, we need to make sure we’re taking care of the parents as well as the children,” he added. “It is our job as pediatricians and health care teams to recognize the parents’ needs and connect them to services.”
Dr. Bayer said only 15% of parents of CMC reported access to peer support groups.
To address these issues, health care centers should offer peer-to-peer support groups and grow family advisory councils.
“Having a child with this level of needs affects families in so many different ways,” Dr. Bayer explained. “With the right support, these families thrive and fulfill their goals.”
“Without enough support, these families often struggle with the emotional and physical demands of constant caregiving, financial stressors, and employment issues,” he added. “They may also be unable to find assistance from community services and home nurses, which are under-funded and under-reimbursed.”
“Mental health is a part of health. Parent and caregiver mental health is a major issue that has a significant impact on children’s health,” Dr. Bayer noted. “We need to talk more about parent mental health, screen for it more, and proactively support it.”
