Supporting Caregivers of Children with Complex Needs – New Study Looks Into Predictors of Emotional Well-being for Caregivers

Caring for a child with complex health care needs can be emotionally and physically demanding. A new study from the University of Pittsburgh Department of Pediatrics and UPMC Children’s Hospital of Pittsburgh highlights challenges faced by family caregivers and identifies ways health care providers can better support them. The findings from the study “Predicting Emotional Well-Being in Caregivers of Children With More Complex Health Care Needs,” were published in Academic Pediatrics.

Caregiver Strain is a Hidden but Prevalent Reality for Millions

In the United States alone, millions of children and families are grappling with complex and chronic health conditions that require frequent visits to the clinic or hospital, often with the need for multiple specialists and therapies, and other specialized health care services. Caregivers often take on significant responsibilities related to the ongoing health care of the child: managing appointments and visits, administering and tracking medications, and overall care coordination. This role and its demands can strain an individual’s emotional well-being, with increased levels of stress, frustration, and even provoking or exacerbating health issues for the caregivers themselves.

About the Study

The study was conducted by Kevin H. Huynh, MS, and senior author Justin Yu, MD, MS, from the Division of Supportive and Palliative Care at UPMC Children’s, and colleagues from the Department of Physical Medicine and Rehabilitation, including Amy Houtrow, MD, PhD, chief of Pediatric Rehabilitation at UPMC Children’s, and Gina McKernan, PhD.

The study was designed to try and identify factors that contribute to reduced emotional well-being in caregivers of children with more complex health care needs.

“We know these caregivers face significant challenges, but there has been limited research looking at what specifically puts their emotional well-being at risk,” says Dr. Yu.

For this study, the team analyzed data from the National Survey of Children’s Health, which gathers information from family caregivers about their child’s health, family situations, and their own well-being. The study examined five years of survey data which included well-being outcomes representing over 10 million family caregivers of children with complex health care needs in the U.S.

The statistical method the team employed to analyze the data was a machine learning approach using gradient-boosted trees.

“This machine learning methodology allowed us to probe a wide spectrum of variables, including things like caregiver access to emotional support, how hard it is to get their child the care they need, and the child’s emotional and behavioral conditions,” says Dr. Yu.

Significant Findings from the Study

The team’s research uncovered several factors that influence caregiver emotional well-being. They found that caregivers who lacked emotional support from friends and family, or community networks were nearly twice as likely to report poor mental health compared to those with supportive relationships. In addition, many caregivers experienced significant frustration when trying to access essential medical services for their children. These service-related barriers often reduced their ability to cope with their caregiving demands.

The study also found that children’s emotional and behavioral health needs played a significant role. Caregivers of children diagnosed with conditions such as conduct disorder faced greater emotional stress, often feeling overwhelmed by the challenges of managing difficult behaviors while balancing other caregiving responsibilities.

“The link between child and caregiver behavioral health we see points to the need to treat these as connected issues,” says Dr. Yu. “Screening and addressing a child’s behavioral health also can improve a caregiver’s well-being. Supporting caregivers isn’t just about managing a child’s underlying medical condition – it’s also about supporting the entire family system.”

Implications for Health Care Providers and Clinical Practice

The findings from the study emphasize that family caregivers of children with complex health needs require more than just clinical guidance. They also need emotional and logistical support.

"Ensuring that caregivers receive the emotional and logistical support they need is essential for sustaining family well-being,” says Dr. Yu.

The findings from the research also suggest that pediatric clinicians should more regularly and proactively screen caregivers for emotional stress, discuss the challenges they are facing, and help caregivers connect to mental health services and other support networks for assistance. Additionally, simplifying access to medical services through more effective care coordination has the potential to reduce overall caregiver stress.

“Caring for anyone with chronic conditions and complex, multiple health care needs is far more challenging than most realize,” says Dr. Yu. “You see this dynamic quite a bit in adults, for example, who are caring for a family member with dementia, and we see it in families with children with complex medical needs. The need is ever present, and it can exact a heavy emotional and physical toll, even on those with plenty of resources.”

Steps Toward Improved Caregiver Support

Dr. Yu and colleagues hope their work sparks changes in how health care systems approach family-centered care. By addressing caregivers’ emotional well-being, health care systems can improve both caregiver and patient outcomes, strengthening family resilience in the face of complex and chronic medical challenges.

"Our study highlights areas where health care systems and clinical providers can adapt to better support families of children with complex health care needs," says Dr. Yu. "Focusing on reducing service-related frustrations and enhancing emotional support can make a meaningful difference. When families have to fight through layers of bureaucracy just to get help, it takes a toll."

Read the complete study using the link below. The article is open access and available for download.

Reference

Huynh KH, McKernan G, Houtrow A, Yu J. Predicting Emotional Well-Being in Caregivers of Children With More Complex Special Healthcare Needs. Academic Pediatr. 2024 November 23. Article in Press.