Navigation Links
Parents receiving heart disease diagnosis for infants need better information
Date:3/14/2014

LOS ANGELES Based on a survey of parents of children with congenital heart disease, physicians delivering the diagnosis need to do a better job of showing compassion, ensuring parents understand all their options and providing easily understandable information, according to a new study published in the February edition of the journal, Pediatric Cardiology.

Researchers at Los Angeles Biomedical Research Institute (LA BioMed) worked with the California Heart Connection, a nonprofit organization of parents of children with congenital heart disease, to conduct an online survey of 841 parents of children who were either diagnosed before birth or shortly afterward with congenital heart disease. The researchers said physicians remain the primary source of information for parents at diagnosis. So they analyzed the survey's findings to offer suggestions for how physicians and other health care providers can most effectively tell parents their child has a serious and potentially life-threatening medical condition.

"Parents confronted with a diagnosis of congenital heart disease face very difficult choices from selecting a treatment to determining whether to continue a pregnancy, if they receive the diagnosis prenatally," said Ruey-Kang Chang, MD, an LA BioMed researcher and the corresponding author of the study. "All of these decisions depend on the information they are given at the time of diagnosis and how well they can understand and retain the information at such a difficult time."

Upon learning of their children's diagnosis, most of the parents surveyed said they received no information on support groups, Internet resources or success rates at other hospitals. Two-thirds of the parents were told their children's heart conditions were "rare." More than half of them believed that meant fewer than one in a million infants had the condition or there were few people alive with the defect. In reality, congenital heart disease occurs in about eight in 1,000 births in the United States, with approximately one-third of those cases requiring invasive treatment during the first year of life.

Of those surveyed, 13% reported feeling pressured to terminate the pregnancy by their pediatric cardiologist, and 15% felt their physician showed a lack of compassion. More than a fourth of the respondents said they sought a second opinion, and 71% of them chose the second physician for long-term follow-up care. The two most commonly cited stress factors were "uncertainty" about their child's future (87%) and "not knowing about survivors with this defect" (52%).

In the United Kingdom, parents have access to a database of information about the number of procedures and mortality rates among children with congenital heart disease. In the U.S., Dr. Chang said no such database is available to the public so physicians continue to be a vital source of information.

"The information parents receive at diagnosis and the manner in which it is conveyed often determines their assessment of their children's chances for survival and may shape the parents' decisions," said Dr. Chang. "To ensure the parents have the information they need to make these critical decisions about their children's health, physicians should provide context for the parents, including information on success rates at different hospitals, Internet resources and referrals to support networks. Physicians should also be aware of how their demeanor and the words they use will be interpreted by the parents."

Debra Hilton-Kamm of the California Heart Connection, and Mark Sklansky, MD, of the David Geffen School of Medicine at UCLA, co-authored the study. The 82-question survey was distributed to online support groups for parents of children with congenital heart disease. A total of 1,001 responses were received and 160 were excluded because they were incomplete or didn't meet the study's criteria.


'/>"/>

Contact: Laura Mecoy
lmecoy@labiomed.org
310-546-5860
Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center (LA BioMed)
Source:Eurekalert

Related medicine news :

1. Parents of Kids With Cancer No More Likely to Break Up
2. Gay Adults Rejected by Parents Have Worse Health, Study Finds
3. Nearly 1 in 4 grandparents store prescription medicines where children can easily find them
4. A physicians guide for anti-vaccine parents
5. Parents poor math skills may lead to medication errors
6. Friends Parents Can Sway Teens Odds for Drinking, Smoking
7. Study: Kids Who Sleep in Parents Bed Less Likely to Be Overweight
8. Many Parents of Kids With Autism Dont Put Faith in Pediatricians
9. Pediatric epilepsy impacts sleep for the child and parents
10. Parents are happier than non-parents, new research suggests
11. Parents Often Lose Sleep Over Childs Epilepsy, Study Finds
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:12/7/2016)... , ... December 07, 2016 , ... One of two ... of the securement tape is painful for her. "This is why the co-inventor and ... heads," she said. , They then created a prototype of the patent-pending AV-AIR, a ...
(Date:12/7/2016)... ... ... Sharon Kleyne, host of the nationally syndicated radio program, The Sharon Kleyne ... declared on her radio program in November 2016 the need to educate people about ... leaders in corporate America, they are trying to take advantage of successful algorithms and ...
(Date:12/7/2016)... ... December 07, 2016 , ... ... is condemning "scam operations" carried out by unethical locksmith companies and is urging ... to a halt. According to Texas Premier Locksmith, these fraudulent locksmith services take ...
(Date:12/7/2016)... ... December 07, 2016 , ... Gensuite ... Brilliance Awards under the Best New Product Launch category. Gensuite’s entry on their ... experience. , BOC Global Events & Training Group is a professional event and ...
(Date:12/7/2016)... (PRWEB) , ... December 07, 2016 , ... “Tomorrow Trump ... Donald Trump bringing greatness back to the presidency and to America. “Tomorrow Trump Goes ... to do as much as she can for this country. , Nancy attributes her ...
Breaking Medicine News(10 mins):
(Date:12/6/2016)... The pen needles market is projected to ... billion in 2016, growing at a CAGR of 11.2% ... Over the years, the pen needles market has witnessed ... growing demand for safety injections in the healthcare industry. ... pen needles with an aim to reduce pain, increase ...
(Date:12/6/2016)... , Dec. 6, 2016  Nearly 30 million people ... from the epidemic of diabetes. 1 However, nearly ... elevated glucose levels (hyperglycemia) and significant glucose variability. 2 ... complications, including cardiovascular events. If left untreated, hyperglycemia can ... eye disease or blindness. 3 As ...
(Date:12/6/2016)... Fla. , Dec. 6, 2016 With opioids commonly ... newcomer in the prescription drug market that has led to nationwide ... approximately seven to eight times stronger than heroin or morphine, resulting ... ... Suzanne Smolkin , vice president, clinical operations, Behavioral Health for HMC ...
Breaking Medicine Technology: