In the Journals

Parental concerns, misinformation deter registration for pediatric organ donation

Organ donor status is uncommon in driving-age adolescents, with approximately one in four parents reporting their child’s registration, according to a C.S. Mott Children’s Hospital National Poll.

Additionally, parents of younger children are more hesitant to promote organ donation for their children. Many believe their children will not receive adequate health care or would not be able to decide which organs would be transplantable if their child were registered.

“This is not a topic that is 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,” Gary Freed, MD, MPH, associate chair and professor in the department of pediatrics at the University of Michigan, said in a press release. “Not all hospitals may have personnel trained to have this type of discussion with grieving parents.”

To examine parental stances and concerns regarding organ donation for children between the ages of 0 and 18, researchers analyzed data collected in November 2017 by GfK Custom Research, LLC, for C.S. Mott Children’s Hospital. The survey sample was nationally representative and was given to a randomly selected, stratified cohort of parents aged 18 years or older.

Of the 2,005 parents to which the survey was administered, 60% completed all questions. Parents reported that 41% of adolescents aged 15 to 18 years were given information on organ donation, with 24% confirming their child’s donor status. Most parents noted that their teen was not an organ donor (57%), and 19% were not aware of their child’s organ donor status.

About half of the parents surveyed would encourage their adolescent to register as an organ donor (49%). The remainder would not promote (22%) or were unsure about their stance (27%) their teenager registering as 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 said in the release. “This suggests that we need to do more to inform teens and their parents about organ donation.”

When children were between the ages of 0 and 14 were considered, parents were less likely to feel comfortable with organ donation, with only 17% wanting to know more about the process. Of the remaining parents, 52% did not desire to learn more about the process, and 27% were unsure. The major concerns most frequently raised by parents of children in this age group regarding registration included life-threatening situations and whether their child would receive adequate care (54%) or whether keeping them alive for this purpose would increase the child’s suffering (53%).

 Additional major concerns reported by parents included struggles choosing which organs would be used (33%), the cost of organ donation (30%) and lesser concerns regarding their religion’s stances of organ donation (7%). Some parents (6%) reported that they were not willing to think about the possibility of 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 said. “There is also never a cost to the donor’s family for organ donation.”

Although many concerns were highlighted, the parents of younger children were able to recognize the benefits of registering their child. Over half favored having their preferences planned in advance (51%) and the possibility of increasing the number of child-sized organs available for transplant (67%). Of all parents of children between the ages of 0 and 14, 70% reported that the opportunity to help other children in need was a benefit of registration.

Parents also had preferences as to where they received information regarding pediatric organ donation. The most commonly-reported sources included their child’s primary care provider (64%), an organization focused on organ donation (37%), local hospitals (24%) and clergy members (7%).

“Parents polled recognized that child 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 said in the release. “This poll suggests that we may benefit from a national, organized mechanism for parents to gain information regarding organ donation and to expand the structure for donor registration to younger ages.” – by Katherine Bortz

Disclosure: Infectious Diseases in Children was unable to confirm relevant financial disclosures prior to publication.

Organ donor status is uncommon in driving-age adolescents, with approximately one in four parents reporting their child’s registration, according to a C.S. Mott Children’s Hospital National Poll.

Additionally, parents of younger children are more hesitant to promote organ donation for their children. Many believe their children will not receive adequate health care or would not be able to decide which organs would be transplantable if their child were registered.

“This is not a topic that is 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,” Gary Freed, MD, MPH, associate chair and professor in the department of pediatrics at the University of Michigan, said in a press release. “Not all hospitals may have personnel trained to have this type of discussion with grieving parents.”

To examine parental stances and concerns regarding organ donation for children between the ages of 0 and 18, researchers analyzed data collected in November 2017 by GfK Custom Research, LLC, for C.S. Mott Children’s Hospital. The survey sample was nationally representative and was given to a randomly selected, stratified cohort of parents aged 18 years or older.

Of the 2,005 parents to which the survey was administered, 60% completed all questions. Parents reported that 41% of adolescents aged 15 to 18 years were given information on organ donation, with 24% confirming their child’s donor status. Most parents noted that their teen was not an organ donor (57%), and 19% were not aware of their child’s organ donor status.

About half of the parents surveyed would encourage their adolescent to register as an organ donor (49%). The remainder would not promote (22%) or were unsure about their stance (27%) their teenager registering as 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 said in the release. “This suggests that we need to do more to inform teens and their parents about organ donation.”

When children were between the ages of 0 and 14 were considered, parents were less likely to feel comfortable with organ donation, with only 17% wanting to know more about the process. Of the remaining parents, 52% did not desire to learn more about the process, and 27% were unsure. The major concerns most frequently raised by parents of children in this age group regarding registration included life-threatening situations and whether their child would receive adequate care (54%) or whether keeping them alive for this purpose would increase the child’s suffering (53%).

 Additional major concerns reported by parents included struggles choosing which organs would be used (33%), the cost of organ donation (30%) and lesser concerns regarding their religion’s stances of organ donation (7%). Some parents (6%) reported that they were not willing to think about the possibility of 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 said. “There is also never a cost to the donor’s family for organ donation.”

Although many concerns were highlighted, the parents of younger children were able to recognize the benefits of registering their child. Over half favored having their preferences planned in advance (51%) and the possibility of increasing the number of child-sized organs available for transplant (67%). Of all parents of children between the ages of 0 and 14, 70% reported that the opportunity to help other children in need was a benefit of registration.

Parents also had preferences as to where they received information regarding pediatric organ donation. The most commonly-reported sources included their child’s primary care provider (64%), an organization focused on organ donation (37%), local hospitals (24%) and clergy members (7%).

“Parents polled recognized that child 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 said in the release. “This poll suggests that we may benefit from a national, organized mechanism for parents to gain information regarding organ donation and to expand the structure for donor registration to younger ages.” – by Katherine Bortz

Disclosure: Infectious Diseases in Children was unable to confirm relevant financial disclosures prior to publication.