Study: Parents invent home safety fixes for medically complex kids

A recent study published in the journal Pediatrics highlights how parents of medically complex children frequently develop independent, inventive strategies to manage safety risks during at-home care. Conducted by researchers at Ann & Robert H. Lurie Children's Hospital of Chicago, the findings indicate that these caregivers often address issues without involving their child’s medical team.

Prevalence of Medical Complexity

Approximately 1 in 20 U.S. children under the age of 18 are classified as medically complex. This designation applies to minors with multiorgan system conditions, such as cerebral palsy, who rely on implanted tube-related medical technology. The majority of this care occurs in the home environment, placing the burden of managing intricate medication and nutrition regimens, as well as handling complicated devices, squarely on parents.

Parental Ingenuity and Isolation

Peter Walsh, the lead author and Behavioral Research Coordinator in the Foster Health Lab at the Stanley Manne Children's Research Institute, noted that while parental resourcefulness is commendable, it underscores a gap in communication. "Our findings highlight parental ingenuity and resourcefulness in developing strategies to tackle safety challenges that often arise during their child's at-home care, such as medical supply issues or malfunctioning devices," Walsh stated. He emphasized that stronger partnerships between care teams and families could help generate shared solutions and prevent safety events, ideally starting when devices are prescribed.

Study Methodology and Findings

The research involved a national sample of 21 English- or Spanish-speaking parents of children with medical complexity. Over the course of one week, participants completed twice-daily surveys detailing their child's tube-related care via text messages, photos, or audio recordings. Subsequent interviews allowed researchers to explore these communications in greater depth. The data revealed that parents navigate patient safety challenges daily and create systematic operations to mitigate risks, yet rarely share these strategies with their healthcare providers.

Top Safety Challenges Identified

The study categorized the most frequent safety hurdles faced by these families:

• Supply Issues (24%): Difficulties in obtaining necessary tube- and medication-related supplies, medications, or equipment.
• Device Malfunctions (22%): Instances where equipment did not work as intended, such as feeding pumps running inconsistently or incorrectly, or medication syringes breaking.
• Irregularities in Care (20%): Situations experienced as normal but potentially unsafe, such as a parent describing how their child's feeding tube would constantly wrap around them overnight.

Recommendations for Improved Care

Carolyn Foster, MD, MS, senior author of the study and Director of the Health@Home Initiative at the Manne Research Institute, advocated for proactive measures to support families. "Our research suggests that proactive measures are necessary, such as offering parents tips about handling frequently encountered safety issues so they don't have to reinvent the wheel each time," Foster said. She added that care plans should be simplified and tailored to individual family needs, emphasizing the importance of constructing support systems where parents know exactly who to contact when facing challenges.

Foster also serves as an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and is the Yaeger Family Research Scholar at Lurie Children's. The study was supported by grant 1R18HS029638-01 from the Agency for Healthcare Research and Quality (AHRQ), part of the U.S. Department of Health and Human Services (HHS).