Bringing ill children from hospital to home can overwhelm family caregivers, affect children's recovery

Bringing acutely ill children home from the hospital can overwhelm family caregivers and affect a child's recovery and long-term health, according to research in the journal Pediatrics.

In a study posted online by the journal Nov. 30, researchers at Cincinnati Children's Hospital Medical Center say the study provides "family centered" input that allows them to design and test interventions for improving the transition from hospital to at-home care for ill children. In focus groups and individual interviews that researchers conducted with 61 family caregivers, the authors say families pointed to a need for in-home follow up visits, telephone calls from nurses, enhanced care plans, and other measures.

"Our study finds that transitions from hospital to home affect the lives of families in ways that may impact patient outcomes at discharge," explains Andrew Beck, MD, MPH, study co-author and a physician in the divisions of General and Community Pediatrics and Hospital Medicine at Cincinnati Children's. "Many family caregivers expressed mental exhaustion, being in a fog, the emotional toll of having an ill child and uncertainty on how to care for their child after hospitalization."

Family caregivers included in the study cared for children who had been discharged from the hospital in the preceding 30 days. Eighty-seven percent of participants were female, 46 percent nonwhite, 38 percent were the only adult in the household and 56 percent resided in areas with high rates of poverty. All of the children under care had been discharged from Cincinnati Children's, a large urban medical center with a diverse patient population.

Researchers conducted a detailed analysis of transcripts from the focus groups and interviews, which led to different themes that categorize specific caregiver concerns: 1) "In a fog" - barriers to processing and acting on information; 2) "What I wish I had" - desired information and suggestions for improvement; 3) "Am I ready to go home?" -discharge readiness; 4) "I'm home, now what?" - having confidence about post discharge care.

"Participants in our study expressed a desire for specific details about worrisome clinical signs or symptoms. Interventions designed to address informational needs and gaps identified by caregivers may improve feelings of readiness or preparation for transition to the home," said first author Lauren Solan, MD, MEd, a fellow at Cincinnati Children's during the study and now a physician in the Division of Pediatric Hospital Medicine, University of Rochester Medical Center, in Rochester, NY.

The importance of successful hospital-to-home transitions is recognized by leading pediatric and nursing medical societies as vital to ensuring safe patient discharge to the home environment, according to the researchers. Unfortunately, current care delivery models create a fragmented hospital-to-home transition that puts undue burdens on patients, families and the health care system, they add.

The current study is part of a multi-stage research project led by Cincinnati Children's called the Hospital-to-Home Outcomes (H2O) Study, which is focused on improving hospital-to-home transitions for children. This paper zeroed in on obtaining detailed qualitative input from caregivers that would help develop and refine "family centered" solutions. A follow up study already underway is testing the effectiveness of nurse follow-up visits in patient homes; the content and structure of these visits have been enhanced based on family input. Researchers are enrolling up to 1,500 participants to measure the impact of these visits on hospital readmission rates and outcomes found to be meaningful to families.