Parent misconceptions may hinder child organ donation

January 23, 2018, University of Michigan
Parents' major concerns often included misunderstandings about medical care, potential suffering and cost related to child organ donation. Credit: C.S. Mott Children's Hospital National Poll on Children's Health

Children in need of an organ transplant often wait longer than adults for available organs, as in many cases, they require organ donations from another child of a similar age or size.

But organ donation among kids and teens is an understandably difficult topic to broach with parents. And parent misconceptions about child organ donation may further complicate the process, a new national poll finds.

Parents' major concerns often included misunderstandings about medical care, potential suffering and cost related to child organ donation, according to this month's C.S. Mott Children's Hospital National Poll on Children's Health at the University of Michigan. Only one in four parents polled say their driving age teen is registered to be an organ donor.

The report is based on responses from 2,005 parents with at least one child aged 0-18.

"We found that there are many misconceptions around child organ donation that may prevent parents from considering it," says poll co-director Gary Freed, M.D., M.P.H.

"This isn't a topic that's typically discussed in schools or other platforms, so parents' first introduction to child organ donation may potentially come at the most difficult moment of their lives," Freed adds. "Not all hospitals may have personnel trained to have this type of discussion with grieving parents."

Although teens are often able to register as when they get a driver's license, just 24 percent of parents of teens ages 15-18 said their child had registered. While 49 percent of these parents said they would encourage their teen to register, 22 percent would not.

Fewer than half of parents of teens ages 15-18 also reported their teen had received information about being an organ donor.

"Teens of driving age are typically able to make a decision about whether or not to be an organ donor but are unlikely to receive much information about it up until that point," Freed says. "This suggests that we need to do more to inform teens and their parents about organ donation."

Many parents also expressed concerns about organ donation that may be based on inaccurate perceptions, the poll found. About half of parents reported major concerns about whether their child would get all treatment options in a life-threatening situation (54 percent) and that keeping their child alive for organ donation might make their child suffer more (53 percent). Other major concerns were not knowing if they could decide which of their child's organs would be used for transplant (33 percent) and the potential cost of organ donation (30 percent).

Few parents said their religion did not support organ donation (7 percent), while 6 percent of parents said their only major concern was that they just didn't want to think about organ donation.

"It is important for parents to know that registering their child as an organ donor will not negatively affect medical care in any way, nor would their child experience any pain," Freed says. "There is also never a cost to the donor's family for organ donation."

Parents of younger children seemed the least comfortable with organ donation. Only 17 percent of parents of children 0-14 years said they would like to learn more about organ donation while 52 percent would not want to learn more. Most parents preferred to learn about organ donation from their child's primary care provider (64 percent) or an organ donor organization (37 percent). Another 24 percent wanted the source to be a local hospital and 7 percent preferred to discuss it with a clergy member.

Parents also recognized major benefits of having their child registered as an organ donor, including having their preferences known in advance (51 percent), having an opportunity for their child to help other children (70 percent), and increasing the number of child-sized organs for transplant (67 percent).

More than 2,000 U.S. children are on an waiting list for kidneys, livers, hearts, lungs and other organs, according to the federal Organ Procurement and Transplantation Network.

"Parents polled recognized that organ donation helps save the lives of other children. Of course no parent wants to think about the possibility of facing this kind of decision," Freed says.

"This poll suggests that we may benefit from a national, organized mechanism for to gain information regarding ."

Explore further: Despite removal of many obstacles, UK child organ donation rates remain low

Related Stories

Despite removal of many obstacles, UK child organ donation rates remain low

December 14, 2017
Despite the removal of many logistical/professional obstacles, and clear guidance from national bodies, UK child organ donation rates remain lower than in other comparable countries, say experts in a leading article published ...

Potential number of organ donors after euthanasia in Belgium

April 11, 2017
An estimated 10 percent of all patients undergoing euthanasia in Belgium could potentially donate at least one organ, according to a study published by JAMA.

Physicians have higher rate of organ donation registration than general public

July 15, 2014
A study that included about 15,000 physicians found that they were more likely to be registered as an organ donor compared to the general public, according to a study in the July 16 issue of JAMA.

Organ donation in Ontario increased 57 percent since 2006 after new Canadian donation policy

September 25, 2017
Organ donation in Ontario increased 57% since 2006 when the province introduced a Canadian policy that allows donation of organs after circulatory functions cease, called circulatory determination of death (DCD), according ...

Study shows people reading about organ donor recipients more receptive to donating than when reading about donors

May 2, 2017
(Phys.org)—A small team of researchers affiliated with Ben-Gurion University of the Negev in Israel and Decision Research and the University of Oregon in the U.S. has found evidence that suggests people are more open to ...

First successful organ donation from newborn carried out in UK

January 19, 2015
The very first successful organ donation from a newborn carried out in the UK is reported in the Fetal & Neonatal Edition of Archives of Disease in Childhood.

Recommended for you

Best of Last Year—The top Medical Xpress articles of 2017

December 20, 2017
It was a good year for medical research as a team at the German center for Neurodegenerative Diseases, Magdeburg, found that dancing can reverse the signs of aging in the brain. Any exercise helps, the team found, but dancing ...

Pickled in 'cognac', Chopin's heart gives up its secrets

November 26, 2017
The heart of Frederic Chopin, among the world's most cherished musical virtuosos, may finally have given up the cause of his untimely death.

Sugar industry withheld evidence of sucrose's health effects nearly 50 years ago

November 21, 2017
A U.S. sugar industry trade group appears to have pulled the plug on a study that was producing animal evidence linking sucrose to disease nearly 50 years ago, researchers argue in a paper publishing on November 21 in the ...

Female researchers pay more attention to sex and gender in medicine

November 7, 2017
When women participate in a medical research paper, that research is more likely to take into account the differences between the way men and women react to diseases and treatments, according to a new study by Stanford researchers.

Drug therapy from lethal bacteria could reduce kidney transplant rejection

August 3, 2017
An experimental treatment derived from a potentially deadly microorganism may provide lifesaving help for kidney transplant patients, according to an international study led by investigators at Cedars-Sinai.

Exploring the potential of human echolocation

June 25, 2017
People who are visually impaired will often use a cane to feel out their surroundings. With training and practice, people can learn to use the pitch, loudness and timbre of echoes from the cane or other sounds to navigate ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.