New Study from UPMC Children’s IBD Team Explores Nature Parental Distress

Caregiver stress, to varying degrees, exists for virtually any individual tasked with providing care for a family member. With chronic, potentially life-long illnesses, stress levels can profoundly impact quality of life and the caregiver's overall physical and behavioral health.

A new study from members of the IBD Center at UPMC Children’s Hospital of Pittsburgh investigates caregiver distress in parents of children with inflammatory bowel disease.

Sandra C. Kim, MD, Director of the IBD Center at UPMC Children's, was the study's senior author.

"Parental distress associated with caring for a child with IBD is an understudied area. Anecdotally and experientially, clinicians are aware of it. However, there is not a lot of hard data available on the subject," says Dr. Kim. "Our study surveying parents providing care for children with IBD gives more support for understanding the prevalence, nature, and severity of distress and how these components may vary based on caregiver demographics. Moreover, this data provides additional support for clinicians to be cognizant of the potential for caregiver distress and make screening a routine part of their practice. Finally, it highlights the need for programs that support the entire family as we work towards providing patient – and family – centered comprehensive care for our families living with IBD."

Dr. Kim and colleagues' study surveyed two cohorts of parent caregivers: those with a newly diagnosed child and those parents with a child with an established diagnosis. The ages of the children reflected in this study were between 2 and 17.

Caregivers were surveyed on their experiences and symptoms related to anxiety, depression, and post-traumatic stress disorder.

Results from the study were intriguing. The team found unexpectedly low levels of reported moderate to severe anxiety (20%), depression (13%), and PTSD (8%). Notably, this is the first study to capture data related to PTSD in parents of children with IBD.

However, contrary to the team's initial hypothesis, they did not find these levels of distress decreased over time. Instead, they remained consistent as the child aged.

The team also uncovered that a parent’s symptoms of distress worsened as the child’s clinical activity increased – the more symptoms and distress the child suffered, the higher the caregiver distress was reported.

Furthermore, the team uncovered that women were more prone to experience distress than their male counterparts.

"While we may have seen lower than expected levels of moderate or severe parental distress, it is important for clinicians to understand that the experience is universal and can vary due to multiple factors. Identifying those at highest risk, and in general, acknowledging and being proactive in discussing it with parents and help to improve their long-term well-being and the health of the child at the center of the IBD diagnosis," says Dr. Kim.

Learn more about the IBD Center at UPMC Children’s Hospital of Pittsburgh.

Read the complete study using the link below.

Reference

Cesa KT, Cunningham CA, Noll RB, Kim SC. Parental Distress in Pediatric Inflammatory Bowel Diseases: Associations With Time From Diagnosis, Disease Activity, and Demographic Factors. Crohns Colitis 360. 2022 Apr; 4(2): otac019.