Skip to main content Skip to main content
Go to homepage

Akron Children’s secures NIH grant to lead research on home-based pediatric palliative care

04-10-2023 (Akron, Ohio )

Akron Children’s Hospital has been awarded a three-year $1.3 million grant from the National Institutes of Health (NIH)/National Institute of Nursing Research (NINR) to better define the practices of high-quality pediatric palliative care, particularly in seeking out the voices of the children, teens and young adults at the center of that care.

The study will engage children, teens and young adults and their parents and providers receiving pediatric palliative care services at Akron Children’s, Nationwide Children’s Hospital, Cincinnati Children’s Hospital, Texas Children’s Hospital in Houston and Rady Children’s Hospital in San Diego.

Dr. Daniel Grossoehme, a senior scientist in Akron Children’s Rebecca D. Considine Research Institute, will be the principal investigator.

“Dr. Grossoehme’s work with Dr. Sarah Friebert is innovative, insightful and game-changing,” said Dr. Michael Forbes, chief academic officer at Akron Children’s. “This type of research grant – the R01  - from the NIH is considered one of the highest in academia, awarded to less than 20 percent of the applicants. As a result, this work is considered the ‘best of the best.’”

According to Dr. Grossoehme, most of the current standards for care for home-based pediatric hospice and palliative care were derived from adult hospice and palliative care, and generally represent the perspectives of parents and providers from data which pre-dates the Covid-19 pandemic.

“There is an urgent need to better understand the experiences of the children and teens receiving this care,” said Dr. Grossoehme. “Our central hypothesis is that pediatric patients have perspectives and words to describe important aspects of their care that differ from those of their providers and caregivers.”

The NINR is particularly interested in seeking data from medically-underserved populations, including those who live in rural and lower socio-economic communities and those of diverse races and genders in order to reduce pediatric health disparities.

Nearly 2 million U.S. children currently have life-limiting disability or illness, and approximately 5,000 children are within their final six months of life. Pediatric palliative care teams offer these children and their families symptom management, decision-making guidance, and spiritual/psychosocial care.

As with other children’s hospitals, most of the children receiving palliative care services at Akron Children’s have neurological disorders, such as muscular dystrophy and spinal muscular atrophy, as well as chromosomal abnormalities or other genetic conditions.

“These are conditions which are long-term, if not life-long, and negatively impact life for the child and the whole family,” said Dr. Grossoehme. “That’s the palliative care piece – how to improve or maintain that quality of life.”

The researchers will conduct and analyze up to 88 semi-structured interviews of children, teens and young adults ages 11 to 26 about their priorities, goals, and values, even openly talking about end-of-life decisions and when and how they want information to make those decisions. These interviews will integrate with the updated parent and provider data to create the new standards.

“Our mission is to ensure that children of all ages with life-threatening conditions receive the highest quality care possible, wherever they are,” said Dr. Sarah Friebert, the founder and director of the Haslinger Pediatric Palliative Care Center. “To honor this commitment means to hear directly from those we serve, to design and sustain care paradigms that allow them to live their best lives. Clinical practice guidelines have evolved to advance the science of palliative care as the field has grown, but the direct voice of the involved child is missing.”

Summit Mall Play Area
Answer Key:
Click to expand
There are 10 nurses in the picture.

And we have many more pediatric primary care providers in Northeast Ohio. You can meet some of them here.
Summit Mall Play Area
Answer Key:
Click to expand
The five differences are:
– Phone color
– Coat pocket
– Stethoscope earpiece color
– Stethoscope bell dot
– Clipboard paper color

Need help finding a doctor, choosing a location or getting a general question about Akron Children's answered? Call us or fill out the form and we'll help in any way we can.
Summit Mall Play Area
Answer Key:
Click to expand
The two matching doctors are 9 and 14.

With virtual visits, you can see our pediatric experts from the comfort of home or wherever you are.
Summit Mall Play Area
Answer Key:
Click to expand
The correct path:
The Correct Path
We offer many ways to get pediatric care all over Northeast Ohio. Use this page to find the right kind of care and the most convenient location for you.