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.
Dr. Daniel Grossoehme, a researcher in the Rebecca D. Considine Research Institute who has worked closely with Akron Children’s Haslinger Family Pediatric Palliative Care Center for five years, will be the principal investigator.
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 Houston and Rady Children’s Hospital in San Diego.
“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 just about 20 percent of the applicants. As a result, this work is considered the ‘best of the best’ and represents an enterprise milestone where Akron Children’s is the principal investigator of a multi-center study funded by NIH.”
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.”
While these children and teens most likely have also received care in inpatient hospital or outpatient palliative care settings, this study focuses on home care. Clinicians who work in home-based pediatric hospice and palliative care wish to develop a single set of care standards or domains which integrate and prioritize the child perspective with those of the adults in their lives, namely their parents and providers.
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. 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.”