Ohio-based Akron Children’s Hospital is working to develop professional standards for high-quality pediatric palliative care.
Current standards of care for most home-based pediatric hospice and palliative care were derived from models designed for adults, based on data that precede the COVID-19 pandemic. This research will seek pediatrics-specific practices as well as account for any changes that occurred due to the outbreak.
Dr. Daniel Grossoehme, a senior scientist at Akron Children’s Rebecca D. Considine Research Institute, will be the principal investigator.
“There is an urgent need to better understand the experiences of the children and teens receiving this care,” Grossoehme said in a statement. “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 study will engage pediatric patients, teens, young adults, parents and their health care providers receiving palliative care at five hospitals. In addition to Akron Children’s, these include Nationwide Children’s Hospital, Cincinnati Children’s Hospital, Texas Children’s Hospital in Houston and Rady Children’s Hospital in San Diego.
Researchers will conduct 88 interviews with patients ages 11 to 26 about their priorities, goals, values, and end-of-life decisions, the hospital indicated.
The three-year research project is funded through a $1.3 million grant from the National Institute of Nursing Research (NINR), a component of the National Institutes of Health (NIH).
The forthcoming study will also seek data pertaining to medically-underserved populations, including those in rural and lower socio-economic communities and those of diverse races and gender.
Nearly 2 million U.S. children currently have life-limiting disabilities or illnesses, and approximately 5,000 children are within their final six months of life, according to Akron Children’s.
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, the hospital reported.
“These are conditions which are long-term, if not life-long, and negatively impact life for the child and the whole family,” Grossoehme said. “That’s the palliative care piece – how to improve or maintain that quality of life.”
