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In the Community
We hope through our publications and reports you get a better understanding of Doctors Hospital of Augusta services that may be important to you and your family as you choose your health care provider. If you have questions, please contact us.
Community Benefits Reports
Doctors Hospital
- Community Benefits Report 2013
- Community Benefits Report 2012
- Community Benefits Report 2011
- Community Benefits Report 2010
- Community Benefits Report 2009
Community Partnerships
Recognizing that an ounce of prevention is worth a pound of care, Doctors Hospital is dedicated to providing our community with a variety of wellness services, such as childbirth classes, sports training clinics, free health screenings, and annual health events. Our exclusive outreach programs include:
- Living Well - an in-depth education initiative aimed at improving the health status and health knowledge of the Augusta community.
- h2u - Health, Happiness, You is a membership program for people 50-plus, designed to empower its members to manage their health and enjoy a healthy lifestyle.
- Columbia County High School Clinical program - for several years now, Doctors Hospital has partnered with local schools to offer students clinical practice during the school year.
Local Impact
Giving Back to our Community
Doctors Hospital makes a substantial impact on the community each year and understands the value of giving its time, resources and expertise to various community endeavors. From contributions to charitable organizations to sponsoring ever-popular community wellness events and educational outreach programs, Doctors Hospital is committed to giving back to the community. Here are a few recent highlights.
At Doctors Hospital, we take care of our employees in their time of need. In tough economic times, we support our hospital family members through the Hope Fund and to date we've helped over 10,500 families in need as a company.
John Ellis, Sports Medicine Manager; Dean Beasley, Inpatient Rehab Director and Cindy Brown, Infection Control Directory, take some time out of their day to service lunch for the HCA Hope Fund cookout.
A Partnership of Caring: Doctors Hospital and The Lydia Project
Doctors Hospital is a proud community partner of The Lydia Project, an agency offering free services to female cancer patients and their families including rent, utility and prescription assistance, and support to combat the common feelings of hopelessness and isolation many women face throughout cancer treatment.
This year, construction on The Lydia Project's Daksha Chudgar Lydia House, a 9,000 square foot respite facility was built in Augusta for women without a place to stay while undergoing cancer treatment, was completed. The Daksha House was built on Doctors Hospital's campus and the hospital continues to be a proud supporter of all The Lydia Project's efforts. Doctors provided assistance with fundraising and through the donation of necessary equipment and in-kind services so that both local women, and those traveling greater distances for treatment, have a supportive home base while on their journey to fight cancer.
History Made in Augusta: Doctors Hospital Participates in First Cancer Study of Its Kind
The American Cancer Society partnered with Doctors Hospital of Augusta to recruit Cancer Prevention Study-3 (CPS-3) participants. This historic nationwide study was designed to help researchers better understand the genetic, environmental and lifestyle factors that cause or prevent cancer. Participants included men and women between the ages of 30 and 65 who had never been diagnosed with cancer. In total, the study will enroll a diverse population of 300,000 people across the United States. Over the course of the longitudinal study, participants will be asked to complete follow-up surveys every few years.
Locally, Doctors Hospital had an impressive turnout with 152 onsite participants at a one day recruitment event held in April. The support and dedication to finding a cure for cancer was evident among the Augusta community and Doctors Hospital staff.
The Southeastern Firefighters' Burn Foundation
2012, Doctors Hospital contributed more than $125,000 to the Foundation. The funds are vital to continue programs that provide prescriptions, anti-scarring garments, transportation, meals, and housing to burn patients and their families through the Jeffrey Vaden Chavis House and the Shirley Badke Resort.
Doctors Hospital was also vital in making the 2012 Burn Survivors Reunion a success. Approximately 300 burn survivors, family members, Burn Center staff, and volunteers gathered outside the Joseph M. Still Burn Center at Doctors Hospital for a day filled with fellowship and fun. There was a chili cook-off between some competitive first responders, face painting for the children, tours of the new Burn Center, and a balloon release. The Burn Survivors Reunion was a time for patients and families to celebrate their survival and reconnect with their healthcare staff.
Healthcare Science & Technology Education Program
In 2012, over 200 students participated in the intense program at Doctors Hospital that involves two-years of in-school science, math and health curriculum followed by one year of hands on, in-hospital training. A joint partnership between Doctors Hospital and five Columbia County High Schools, the program is designed to encourage students to pursue careers in healthcare. Additionally, this past summer we welcomed 50 Junior Volunteers from the CSRA wanting to get an early introduction to a variety of healthcare professions.
In 2012, Doctors Hospital team of volunteers raised $6,207 for the Light the Night CSRA Walk, benefitting the Leukemia & Lymphoma Society. Director of Inpatient Rehab, Dean Beasley, was recognized as Walk Chair for the 2012 event. Doctors Hospital received the Silver Sponsor Award for the 2012 Relay for Life walk benefiting the American Cancer Society.
Additionally, many staff members at Doctors Hospital volunteer throughout the year serving hundreds of community members at the Golden Harvest Food Bank in downtown Augusta. Golden Harvest Food Bank, a volunteer-driven, non-profit organization, provides quality food and other grocery products to those in need. Their mission is accomplished through local community support through direct service programs, volunteerism, food pantries, and community education about hunger.
2012 Community Events
The 2012 free community events at Doctors Hospital were all about women: women as the healthcare decision makers and heart of the family unit.
In February, motivational and keynote speaker, Zonya Foco, RD, had women in the community energized and engaged about improving their health and sticking to a heart-healthy diet. In April, Dr. Harvey Karp, a nationally renowned pediatrician, child development specialist, and author of the best-selling book, The Happiest Baby on the Block!, traveled to Augusta to speak to new moms and moms-to-be about positive parenting. In September, knee replacement surgical patient and retired professor, Jim Garvey, spoke to community members about climbing Peruvian mountain, Machu Picchu, after having knee replacement surgery. Jim's wife was also there to speak about his decision to have the surgery and helping him recover as his wife and primary caretaker. Finally, in November, finalist from NBC's the Biggest Loser program, Hannah Curlee, came to Augusta to inspire women with the story of her remarkable 120 pound weight loss. The title of the program, Healing Your Heart, Mind, Body and Soul, was absolutely true as a local OB/GYN, NewsChannel6 Anchor, and financial expert rounded out the program's discussion panel and gave women sound advice about how to live a balanced, and successful life. 2012 was truly the Year of the Woman at Doctors Hospital!
Quality Care
How can you really know the care you're receiving is the best? The Agency for Healthcare Research and Quality, the lead federal agency tasked with improving healthcare nationwide, defines quality healthcare as doing the right thing at the right time in the right way to achieve the best possible results. At Doctors Hospital of Augusta, our team of experts lives by this definition every day; in fact, we've been recognized for our commitment to quality care by the most respected organizations in healthcare. Learn more about quality care at Doctors Hospital»


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HARRAH — The Harrah School Board will meet at noon Wednesday to decide whether to call a May 14 special election on a $36.47 million school bond issue that would be slightly more expensive than a similar one that recently was defeated.
Harrah School Board to consider new bond election
School board members unveiled the new proposal at their Monday night board meeting. Controversy surfaced immediately.
Oklahoma County Treasurer Butch Freeman said by Tuesday morning he already had received a telephone call from a Harrah property owner who questioned whether such a quick election would violate the spirit — if not the letter — of a state law.
The law says a district cannot call an election "on the same proposition within four months after such proposition has been defeated at an election by the school district electors."
Kevin McBrayer, newly elected school board president, said board members believe they would be in compliance because a few changes were made to the plans and cost of the new bond issue.
He said board members would explore the issue further before Wednesday's scheduled vote.
New bond issue is different
Harrah Superintendent Dean Hughes said there are at least two main differences between the proposed bond issue and the $36.105 million bond issue that was defeated Feb. 12. Plans for renovation of an auditorium were dropped and plans for a safe room at one school were added, he said.
Among proposed major projects that remain with the new bond issue are new administrative areas with enhanced security entrances to all schools; safe rooms for schools that don't already have them; a new high school football field; other high school sports facility improvements; eight new high school classrooms, 10 new junior high classrooms, four new classrooms and a physical education building/safe room at Virginia Smith Elementary; a new library/safe room at Clara Reynolds elementary; and new phones, furniture and technology improvements at various schools.
The football field and sports facility improvements would cost more than $9.2 million.
Continue reading this story on the...
At a glance
Harrah school bond projects
Following is a list of proposed projects that would be funded by a proposed $36.47 million bond issue that the Harrah School Board is considering scheduling for a May 14 vote:

subset: commoncrawl


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BURBANK, CA - This weekend, the queer comics convention, Bent-Con, will take place Friday, November 30th through Sunday, December 2nd. Featuring over 50 exhibitors devoted to queer comics and fandom, a full slate of panels, cosplay, gaming, and appearances by top comics professionals including Christopher Rice (A Density of Souls), Jane Espensen (Once Upon A Time, Buffy), Phil Jimenez (The Amazing Spider-Man), David Gerrold (Trouble With Tribbles, The Martian Child), Wendy Pini (Elf Quest), Tom Lenk (Buffy), Andrew Chambliss (Once Upon A Time), Patrick Fillion (Class Comics), Amber Benson (Buffy), Traci Lords (Cry-Baby), and many many more.
This is all taking place at the Burbank Airport Marriott, 2500 North Hollywood Way, where rooms are still available. Get your advance tickets and all the latest information at bent-con.org.
Prism Comics promotes the works of the LGBT community in comics. It does not implicitly endorse any other material or products associated with those works. Any opinions expressed are those of the author(s).
News | Features | Profiles | Gallery | Grant | Forum | Links | Shop | Advertise | Donate | About | Contact | Volunteer Login


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- Musician's Friend Best Selection, Price & Service. Guaranteed.
Call our Gear Heads
at: 800-449-9128
Call our Gear Heads
at: 800-449-9128
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Perri's Leathers' LTD knows that guitar straps are more than just fashion accessories. They know the essence of a great guitar strap, one that will connect you to the heart of your expression. Lou Perri, original owner, artist, musician and patriarch, Anthony Perri, innovator and son - together they put the soul into each guitar strap they create. This 100% Genuine Leather guitar strap is 2.5" wide and is adjustable up to 51" long.
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not nearly as nice as it appears in photos
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we use the american flag in the back ground. the red white @ blue straps go well with our theme singing for soldiers.
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Instant "Members Only" Coupon Codes Emailed NOW When You Sign Up for FREE Membership!
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Just click the link to complete your subscription and receive your coupon codes.
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Top-ranked recipe named "Molasses Marinade for Chicken or Pork"
Try this Molasses Marinade for Chicken or Pork recipe, or contribute your own. "Marinade" and "Chicken" are two tags used to describe Molasses Marinade for Chicken or Pork.
Combine all ingredients in a small bowl; stir well. Use to marinate chicken or pork. Yield: 3/4 cup Per Tablespoon: Calories 34; Carbohydrate 7.6 g; Cholesterol 0 mg; Fat 1.2 g (Saturated Fat 0.2 g); Protein 0.1 g; Sodium 54 mg Recipe by: Low-Fat, High-Flavor Cookbook, Oxmoor House, 1995 Posted to recipelu-digest by Badams
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Middle School Mean Girls and Judging Each Other
So for this weeks Ruby's Corner, I decided to shake things up a bit. This was a topic where I really wanted my voice to be heard. It was a problem that needs to be solved and I thought you should really hear what I meant and how much I cared for the topic.
There are two bits to this video. At first, I wanted to focus on how everyone hates middle school because of mean girls. In the second part, I talk about how girls criticize other girls about how they dress and wear their makeup. This is not a topic to joke about. In magazines, someone who I think is really pretty will be looked on badly because they are "overweight".
On Facebook, there is a photo of a skinny girl and a girl who is not as skinny with their bellies standing next to each other. On their tummies is written, "I'm beautiful". Let me remind you, it was on both of their tummies. It had over 100,000 likes. But yet, those people who liked the photo still think the skinny girls are the more beautiful ones. This needs to stop. I normally don't say this but, please share this one. It is a very important topic to me that i feel more people should hear about.


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Best of News
Some of nine prisoners, comprising seven Malian, one Nigerois and one... News Photo2012-2013 Northern Mali Conflict,Al-Qaida,Bamako,City,Gao City,Gao Region,Gendarmerie,Horizontal,Islam,Jihad,Law,Mali,Mauritania,Military,North,Prison,Prisoner,Weapon,West AfricaPhotographer JOEL SAGETCollection: AFP 2013 AFPSome of nine prisoners, comprising seven Malian, one Nigerois and one Mauritanian, are taken out of a jail at the gendarmerie in the northern Malian city of Gao on February 26, 2013 to be transferred on a military flight to Bamako, where they are to be judged on charges of belonging to the main Islamist armed group, the Movement for Oneness and Jihad in West Africa (MUJAO), an Al-Qaeda offshoot. French and Malian government forces reconquered on January 26 the city opf Gao, two weeks after Paris launched an offensive in the north. AFP PHOTO /JOEL SAGET (Photo credit should read JOEL SAGET/AFP/Getty Images)


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The Intergovernmental Panel on Climate Change (IPCC) estimates that 2050 will see some 2 billion people deprived of access to drinking water, and that the numbers will increase to 3.2 billion by 2080. But also keep in mind that, by that time, the world population will have increased from 6.1 billion to 10+ billion. Such a growth rate will put strenuous demands on food and water supplies, which are even now beginning to decline.
Scientists caution that current climate change evolutions are a major threat to water circuits across the world. Wong Poh Poh, National University of Singapore professor, said on Tuesday at a regional global warming conference that floods, droughts and storms are beginning to take an ever-increasing toll on the world's water supply. Couple that with the fact that most global sweet water reserves – trapped in glaciers atop mountains – are dwindling, and you might get a piece of the picture that defines the world today.
Speaking at the Asia Pacific Regional Water Conference, Poh said that "In Asia, water distribution is uneven and large areas are under water stress. Climate change is going to exacerbate this scarcity." His arguments are backed up by the IPCC, which says that, already, some 1.1 billion people, mostly in Africa and Asia, have reduced access to clean water, or are falling ill because they consume unclean water, from unsafe sources.
Malaysian state water association chairman, Rozali Ismail, said at the conference that "As human civilization develops, the environment is increasingly affected in negative ways. Floods, drought, changing rainfall patterns and rising temperatures are signs of our misdeeds to nature." Demographic booms in China and India are currently testing the ability of the Asian continent to provide water to its more than 4 billion people.
The only solution to this crisis would be the implementation of a worldwide agreement that will regulate both emissions and water usage, but, in order for that to happen, countries such as the United States, India and China would have to sit down and sign the papers as well. They did not do this at the Kyoto Convention, out of fear that saving the planet might cause their economies some damage.
The December 2009 International Conference, scheduled to take place in Copenhagen, will dictate the way our world will be shaped in the coming decades.


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Raytheon Named a 'Best Place to Work' for LGBT
Company Earns a Perfect Score for 10th Straight Year
The Human Rights Campaign has named Raytheon as a 2015 "Best Place to Work" for lesbian, gay, bisexual and transgender (LGBT) employees, giving the aerospace and defense company a perfect 100 percent rating for the tenth year in a row.
HRC, a Washington, D.C.-based civil rights group, surveyed 971 businesses for its annual Corporate Equality Index (CEI), which reports on policies and practices related to LGBT equality in the workplace. Among the practices considered for the survey were non-discrimination workplace policies, domestic partner benefits, transgender-inclusive health care benefits, competency programs and public engagement with the LGBT community.
"This perfect 100 percent rating from the Human Rights Campaign for the tenth year in a row reflects how strongly Raytheon values the diversity of its workforce," said Hayward Bell, chief diversity officer for Raytheon. "We don't just encourage the development of a diverse workforce. We insist on it as a key competitive advantage worldwide."
Raytheon, one of 366 organizations to earn a perfect score on the index, has long been a pioneer in diversity among aerospace and defense companies. In January 2002 it became one of the first in its industry to adopt a benefits policy for domestic partners. In 2005, it became the first defense company to receive a perfect score on the Corporate Equality index.
Raytheon has received a number of honors recognizing its commitment to diversity. In 2014, the Women's Business Enterprise Council listed Raytheon as one of America's Top Corporations for Women's Business Enterprises, and Equal Opportunity magazine named the company as a Top 50 Employer.
"In order to achieve a perfect score, a company has to show a deep and serious commitment to treating their LGBT employees fairly and equally on the job," said Human Rights Campaign President Chad Griffin. "We also look at whether a company is speaking out in the public square to advocate for LGBT equality here in this country and around the world. Raytheon not only meets these standards, it goes above and beyond the call of duty, making commitment to equality a fundamental aspect of its corporate values."
Raytheon is among the largest defense companies in the world, with 63,000 employees worldwide and 2013 sales totaling $24 billion.
For more information on the 2015 Corporate Equality Index or to download a free copy of the report, visit www.hrc.org/cei.
Published: 07/03/2014
Last Updated: 11/19/2014


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Tagged: Mike Dunleavy Jr.
Who says no? Exploring logical trade scenarios for the Sacramento Kings
Hypothetical deals that the Kings could make to reshape their roster.
Cowbell Kingdom Podcast Ep 84: Dale Kasler of the Sacramento Bee talks Kings, Seattle and AEG
Discussing the latest developments in the Sacramento Kings relocation saga.
WATCH: Sacramento Kings on DeMarcus Cousins' ejection after confrontation with Mike Dunleavy Jr.
Reaction to Cousins' latest act of self-implosion.


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George W. Bush Presidential Library Prepares For Official Dedication Ceremony
Former President George W. Bush and center architect Robert A.M.... Nieuwsfoto'sArchitect,Campus,Ceremonie,Dallas,Freedom Hall,George W. Bush,George W. Bush Presidential Center,Gulf Coast States,Horizontaal,Overeenkomst,Politiek,Southern Methodist University,Texas,Verenigde Staten,VoormaligPhotographer Kevork DjansezianCollection: Getty Images News 2013 Getty ImagesDALLAS, TX - APRIL 24: Former President George W. Bush and center architect Robert A.M. Stern meet before the signing ceremony inside Freedom Hall for the joint use agreement between the National Archive and the George W. Bush Presidential Center on the campus of Southern Methodist University on April 24, 2013 in Dallas, Texas. Dedication of the George W. Bush Presidential Library is to take place on April 25 with all five living U.S. Presidents in attendance. (Photo by Kevork Djansezian/Getty Images)


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- Infowars - http://www.infowars.com -
Oil slumps on eurozone strains, Mideast
Posted By kurtnimmoadmin On November 20, 2012 @ 4:03 pm In Global Crisis,Old Infowars Posts Style | Comments Disabled
November 20, 2012
Oil prices have slumped on fresh economic strains caused by a downgrade to France's credit rating, and on easing Middle East supply concerns amid hopes of an Israel-Gaza truce, analysts say.
New York's main contract, light sweet crude for delivery in January, slid $US2.61 to $US96.67 a barrel.
Brent North Sea crude for January shed $US2.30 to $US109.40 a barrel in late London deals. Oil prices had struck one-month highs on Monday after gains of about two US dollars a barrel on the Israel-Gaza violence.
Article printed from Infowars: http://www.infowars.com
URL to article: http://www.infowars.com/oil-slumps-on-eurozone-strains-mideast/
Click here to print.
Copyright © 2015 Infowars. All rights reserved.


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Axel Merk (@AxelMerk) of Merk Investments made this point on Twitter "Why are there blogs, when there's Twitter? 140 characters plenty to summarize Bernanke."
I agree but couldn't resist banging out a blog post anyway. I tweeted a few times my summary of Bernanke's testimony this way:
@AxelMerk @WSJ Ben saying it all "depends" "IF" the economy improves as forecast-it won't without QE so #nofedexit https://smaulgld.com/tag/fed-exit-strategy/
Fed moderates the pace of QE later this year, and end it around midyear 2014, IF economy evolves as forecast. It won't so #nofedexit
@joebrusuelas Yep IF, IF IF All based on moving targets and slightly rosy forecasts that if not met, QE continues https://smaulgld.com/tag/fed-exit-strategy/
Taper? Fed says it may have to Let it Out by a few billion instead if things don't improve as forecast #nofedexit https://smaulgld.com/tag/fed-exit-strategy/
How would you summarize Bernanke's testimony? Tweet to @smaulgld
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user banned Due September 18 (boy); 1 child; California 21617 posts10th Nov '12
Quoting PurpleDurple:" Mac and cheese, also chicken nuggets and rice."
Harlow loves nuggets but she peels the skin off of them, lol.
JessicaMatlock:) Due May 7 (boy); 1 child; Modesto, California 1337 posts10th Nov '12
mac n cheese or cereal and milk... we had a big bbq at so house and she had a bowl of cereal
I'm His Amy He's My Rory 2 kids; Caldwell, Idaho 49366 posts10th Nov '12
Rory had chicken spinach garlic pizza tonight and it was a hit.
HopingforaMiracle 1 child; USA 23103 posts11th Nov '12
She loves veggies


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Get the latest Flash player
Date: 5 years ago
Runtime: 2:25
Views: 129,677
Top Comments
All Comments
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Very hot. Nice to see some safe play. And nice to see a guy shoot internally and pull out a condom filled with cum. Him holding it in the end was a nice touch. Commented, rated, and featured.


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What Can You Earn with a Bachelor's Degree in Business Administration?
Programs in business administration offer a diverse choice of career options. Be it accounting, economics, management, marketing, human resources or other areas of study, a Bachelor of Business Administration (BBA) program could prepare you to enter the business world. If you'd like to know how much you might make after earning a BBA, keep reading. Schools offering Business degrees can also be found in these popular choices.
Accountants keep records, handle tax information and prepare other financial documentation for many different businesses, government agencies and individual clients. After earning a BBA degree, it is recommended that you study and pass the Certified Public Accountant (CPA) exam, though licensure typically requires that you complete about 30 credits beyond a bachelor's degree. Accountants can work for private accounting companies, public or private businesses or non-profit organizations, or you can start your own accounting business. According to the U.S. Bureau of Labor Statistics (BLS), the median annual wage for accountants was $63,550 as of May 2012. With experience and credentials, that figure can climb up to above $111,000 annually.
Economists are responsible for researching and collecting financial data as well as monitoring trends in the national and international economy. They use that information to forecast economic indicators, such as inflation, interest rates, taxes and employment. Some of the methods that you may use to collect this data include surveys, modeling techniques, tables and charts. While an advanced degree in economics is suggested if you want to be an economist in the public sector or academia, a BBA degree is fine if you want to find employment at the federal, state or local government level. The BLS reported that as of May 2012, the median annual wage for economists was $91,860.
Financial Management
Controller, comptroller, financial officer, treasurer and many other similar titles are all in the field of financial management. Financial managers are responsible for many functions, including preparing financial reports, analyzing expenses based on future earnings, overseeing budgets and developing business strategies. Because these positions are supervisory, you may need experience in management or accounting before moving up to these jobs. The BLS estimated that as of May 2012, the median annual salary for financial managers was $109,740.
To continue researching, browse degree options below for course curriculum, prerequisites and financial aid information. Or, learn more about the subject by reading the related articles below:


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Siena's Palio Horse Race
Jockey Giovanni Atzeni , known as Tittia, rides his horse bareback on... ニュース写真イタリア,ウマ,カンポ広場,シエナ,トピックス,パリオ,ヒューマンインタレスト,ライフスタイル,乗る,乗馬,余暇,勝つ,広場,旅行,横長,飼育動物,騎手Photographer Chris JablinskiCollection: Getty Images News 2013 Chris JablinskiSIENA, ITALY - AUGUST 16: (RESTRICTED TO EDITORIAL USE - NO MARKETING, NO ADVERTISING CAMPAIGNS) Jockey Giovanni Atzeni (L), known as Tittia, rides his horse bareback on his way to winning the Palio dell'Assunta horse-race at Piazza del Campo square on August 16, 2013 in Siena, Italy. The Palio races in Siena, in which riders representing city districts compete, and takes place twice a year in the summer in a tradition that dates back to 1656. (Photo by Chris Jablinski/Getty Images)


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Therylune's EscapeThis quest was marked obsolete by Blizzard and cannot be obtained or completed. Help Therylune escape, then tell Therysil at the Shrine of Aessina that her sister is safe.
|Escort Therylune away from the Master's Glaive
I was wandering around the Master's Glaive, and these dirty cultists surrounded me. Lucky I'm good at hiding!!
Can you help me out of here? And I need to send word to my sister Therysil that I'm all right. She's in Ashenvale to the south, at the Shrine of Aessina.
My sister was where?? Therylune doesn't mind getting herself dirty, but still! That's a long way to wander, and the Master's Glaive is an unwholesome place...
Well thank you, <name>. It was very nice of you to let me know she's all right.
Well thank you, <name>. It was very nice of you to let me know she's all right.
RewardsYou will receive: 10
GainsUpon completion of this quest you will gain:
- 1,350 experience
- 250 reputation with Darnassus


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As the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words.
Parents want to do their best for their children, and socially and legally their role is to care for and protect them yet the complexities of the medical and research context can challenge their fulfilment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual parents will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make.
Discussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties.
When parents are asked to consider enrolling their child in a paediatric clinical trial their primary responsibility is the best interests of their child. This role is very different to an adult deciding about their own participation in a trial, whose role involves exercising individual autonomy [1]. Grappling with complex, medical information is always part of trial decision making but when this is on behalf of a vulnerable and dependent child, rather than to serve one's own rights and interests, the decision will likely feel more serious and possibly overwhelming. Despite this fundamental difference between trials in adult and paediatric medicine, relatively little is known about how the particular role of parents influences the communication about a trial. Insight into this is important if we are to improve families' experiences of trial recruitment, as well as optimise enrolment procedures and suggest appropriate directions for future research.
In this paper we will argue that when parents are approached about a trial for their child, the decision is influenced by particular considerations and requires special management. We will discuss evidence on the complex experience of parents when considering trial entry for their child, what trials mean to them and what contextual factors impact on their experience of decision making. We have drawn primarily on studies which have a qualitative design, though we have included a wider body of evidence where it offered useful insights. Studies using qualitative methodology were specifically targeted because they access participants' accounts in their own words, allowing more scope to explore their meanings and experiences and making fewer assumptions about what is important to them [2].
This discussion does not aim to make specific recommendations for how to discuss randomised clinical trials with parents, rather its intention is to increase awareness of how parents make sense of trials and suggest directions for future research to improve the experience of recruitment to trials from the perspective of all parties involved.
Vulnerability, responsibility and regret
For parents the diagnosis of serious illness in a child can be a shattering experience [3]. When consent is sought soon after diagnosis, parents will be making decisions when they are distressed and vulnerable [4-6], whilst simultaneously trying to comfort their sick child. Being approached about a trial confronts parents with a volume and complexity of information well beyond their everyday experience and they can never be certain about what is the 'right' decision. However, whilst they may be vulnerable, protecting their child is fundamental to the parental role and this will shape how they think about trials. Parents in one study felt personally and directly accountable for their child's outcome on a trial and thought that giving consent for a child would be much more difficult than deciding to take part in a trial themselves [7]. Survey evidence confirms that the responsibility to act in the best interests of one's child is keenly felt, with one third of parents in one study reporting that while they might accept certain research risks for themselves they were much less certain about accepting the same risks for their baby [8].
The sense of responsibility that accompanies parents' decision making about trials may paradoxically render them more vulnerable, especially to the anticipation of regret [9]. Mothers whose children were enrolled into a bone marrow transplant trial dreaded the possibility that they might have to live with the knowledge that they had made the 'wrong' decision and this was intensified when things did not go well for the child [10]. Mothers of children with leukaemia [11] felt highly dependent on clinicians and experienced considerable unease in making decisions about trials with little grasp of the disease. People are motivated to avoid regret by making decisions that minimise its likelihood [12] and the more important the outcome, the greater the anticipation of regret particularly if the outcome is irreversible [13]. In view of the roles and responsibilities of parenthood, the anticipation of regret about potentially 'failing to protect' one's child may be a major influence on parents' decisions about trials. Canvin and colleagues speculate that the sense of responsibility surrounding the trial decisions of parents of children with epilepsy was eased by the voluntary and reversible nature of the decision [14]. However, when things do go wrong, people experience more regret for acts of commission (doing) than for acts of omission (not doing) [15], and think more about harm caused by direct action than about indirect harm [9]. Therefore, parents may hesitate to vaccinate their child even under conditions where the likelihood of a fatal side effect is only a fraction of the death rate from the disease [16], presumably because anticipated regret looms larger for the act of vaccination. As yet no research has looked at whether parents respond in the same way to trial participation – rationalising that not participating minimises the chance of regret and is the 'safest' option.
Understandings of events can, of course, be retrospectively shaped and reconstructed to manage regret. Parents who consented their child to enter the ECMO trial [17] constructed randomisation as offering protection from responsibility should the child have a poor outcome. This protection could be extended to doctors, who in the eyes of some parents could not be held responsible when there was uncertainty as to the best treatment. Some families constructed their views about which is the 'best' arm of the trial based around which arm they were allocated to – for example, some who were allocated to conventional treatment focussed on the likelihood that this avoided the risks associated with the treatment arm and need for transfer to another unit [17].
Recognising this difficult situation for parents, the incompatibility of wanting to do what is best for the child but not knowing what the best course of action is, may be critical in understanding how parents respond to clinical trials. What may seem to the trialist as a misunderstanding of trial rationale may be the parent constructing the situation in a way which is acceptable to their need to protect their child.
The parental role and the function of consent
Decisions about trial entry may be a source of intense emotional strain for parents but being offered options about their child's treatment and research participation is likely to serve important psychological functions, particularly at times when there is little else parents can do instrumentally for the child. Parents of children hospitalised for spinal surgery described the "loss of parental role" and the accompanying helplessness and frustration they experienced as being of a similar magnitude as their distress about the potential of poor surgical outcome and watching their child in pain [18]. The process of consent itself could function as a symbolic acknowledgement of their role when there is little else parents can do.
When asked their views on Zelen randomisation (single consent method), parents whose baby was involved in a conventionally randomised trial were evenly divided on its acceptability [19]. With this method, randomisation takes place prior to discussion with the family. If the child is allocated to the conventional treatment arm, they are not informed about the trial. Only if the child is allocated to the experimental arm is consent sought. In offering 'protection' from the difficulties of trial decision making, the knowledge that there are treatments which they cannot access, and from the knowledge that treatment is determined by chance, this approach might be considered 'kinder' to those families allocated to the conventional treatment arm. However, Zelen randomisation was viewed negatively by some parents because they perceived it as preventing the sense that they were operating in the best interests of their child. As difficult as the decision on trial entry was for parents, they felt it was theirs to make [19]. Similarly, parents who participated in a survey investigating different types of consent to hypothetical neonatal resuscitation trials were more comfortable with prospective consent than with consent which was deferred, waived or required the parent to 'opt-out'. They wanted to be informed about the trial and make the decision themselves [20]. Other surveys provide further evidence that parents value their role in decisions about trial entry – over 90% say they do not want the doctor or nurse to decide on their behalf [21,22,8]. Parents upheld these views even when they realised that the quality of their consent was limited or experienced the informed consent process as an additional burden [23], indicating that consent could indeed serve important symbolic functions. Research on trials which involve deferred or waived consent [24] could further inform ideas about the social function of consent and processes of regret, both of which might be configured rather differently depending on whether consent is conventional, waived or deferred.
Bioethicists and others have pointed out that informed consent did not develop to safeguard autonomy, rather its primary purpose is to preserve well-being [25,26]. Allmark and Spedding suggest that parental consent for clinical trials is important as a social recognition of the role of parents, but offers little additional protection for children to that provided by appropriate research ethics, safety monitoring and governance procedures. From this position the quality of parental consent might be less critical, and their decision making difficulties could be eased by knowing about ethics [23] and other research safety and governance procedures. Of course, this assumes parents can be confident in the protection offered by research governance and monitoring but a recent review suggests that safety monitoring in paediatric trials may have been inadequate in some cases and highlights the need for monitoring of all paediatric trials [27]. At the same time as wanting the option to decide, parents value doctors' advice about trials [28] and some look to share responsibility for their decisions with practitioners. In one neonatal study three-quarters of parents believed their doctors would not ask to do research if it might put babies in real danger [8] and half indicated that they trusted their doctor and if he or she suggested their baby should enter a trial, they would agree. Though they have authority for their child, parents lack expertise in matters related to the child's illness, and as a consequence, are likely to rely heavily upon the expertise of medical practitioners.
The role of parents in trial decision making is therefore complex – they can be simultaneously responsible for their child and dependent on practitioners. The challenge for trialists in discussing paediatric trials with parents is to balance the tensions this brings, so supporting parents' decision making appropriately and guarding against the possibility of regret [7]. Research on how this might be achieved is much needed. The potential for emotional conflict is apparent in the accounts of parents of babies receiving treatment on NICU [29], who were united in wanting to be considered the primary decision-maker for their baby, but were much less consistent in wishing to be actively involved in decisions which they viewed as serious. The authors suggest that asking parents to do so could carry high 'psychological costs'.
Threat, hope and certainty
The seriousness of the child's condition and the urgency surrounding trial entry will be important influences on how parents experience recruitment to trials, their sense of vulnerability, and the success of communication [23]. In turn, these will have consequences for whether parents retain a sense that they have operated in their child's best interests [30]. Parents considering oncology and neonatal trials report particularly high levels of distress during trial discussions and a sense that this impairs their ability to ask questions or seek additional information [31] occasionally leading them to later doubt their decisions [32]. In these situations the thoughts and emotions of parents are dominated by the fact that they have a very sick child [33] or worse, the fear that their child might die [34]. By contrast, parents of children with less serious chronic illnesses report more comfort in making decisions about trial entry [32] and in judging what is in the best interests of the child because they have experience of the disease. It follows that parents' priorities will vary with the seriousness of their child's illness. For example, parents of children participating in research on mild to moderate asthma rated "learn more about disease" as the primary motivation (from 14 choices) [35]. In chronic childhood illness, the day to day management of the condition, the child's quality of life and the simple practicalities of trial participation may gain importance. This is in marked contrast to parents of children whose lives were in the balance, some of whom struggled even to understand or recall that research participation was voluntary [10].
Parents' worries and misperceptions provide further insights into what trials mean to them and point to specific sources of difficulty in communication. The worry that their child might be randomized to the less effective treatment [31] and the responsibility that they would feel if the child later deteriorated are particularly common [1]. On finding that their child has been allocated to the standard treatment arm, parents sometimes report a sense of disappointment or missed opportunity, as if the child has been deprived of a known beneficial treatment or has 'failed' the selection process. Some mothers felt resentment that they had been asked to go through the trauma of deciding about trial entry for 'nothing' [11]. Others viewed randomisation as a way of allocating limited resources and expressed guilt that their child had been allocated the experimental arm while others had only received conventional treatment [17,36]. Founded on a difficulty in accepting that there is uncertainty about the effectiveness of trial treatments or an assumption that the experimental treatment will necessarily be superior, these responses remind us that in the face of intense threat and uncertainty, parents look for hope and certainty. In such circumstances it is not surprising they find the uncertainty that is intrinsic to trials challenging both cognitively and emotionally, or that they are liable to construct trial treatments as the answer to their child's needs.
The generally high rates of recruitment to trials in neonatology [37] and childhood cancer [38] suggests the level of threat and parents' consequent needs for hope could be important influences on how they view trials. Parents of chronically and terminally ill children stated that they were prepared to take greater risks in treatment in the hope of a cure [7]. Similarly, parents' decisions about Phase 1 cancer trials, which can bring side-effects and offer little chance of long term medical benefit, may turn upon a fear of 'giving-up' on their child and the need to 'leave no stone unturned'[39,40]. High recruitment rates may also be testament to the importance that is deservedly placed on research in neonatology and childhood cancer by both parents and trial staff [41,42]. But they could also be a sign of parents' reluctance to decline a trial where it involves saying "no" to the clinical team on whom their child's care depends. By contrast parents of healthy children considering participation in vaccine research believed that children should only take part in research where the medical benefits outweigh any potential risk [43]. Work comparing what researchers say and intend when they discuss trials with parents, and what parents interpret from these discussions will yield further insights into the challenges for both parties [44] and how they co-construct their views of trials and their respective roles.
In deciding about hypothetical research scenarios, parents and children were more likely to respond intuitively and emotionally to research information than to systematically attempt to consider and weight all the available information. The result was that the 'information' participants used to underpin their decisions was often very different to the information that the researchers intended them to use [45]. Participants' emotional responses to information were shaped by their particular life experiences. Similarly, Chantler and colleagues report that parents who received the same information about a vaccine study varied widely in their perceptions of the risks of the trial, with some seeing it as potentially dangerous while others viewed it as safe with no negative effects. Parents from a professional background in science or ongoing experience of medical care were less likely to cite anxiety and unfamiliarity as a reason for declining the trial, and in the view of the authors, were more open to research and better able to judge the trial's importance and value [43].
If the same information can mean different things to different people, clinicians' assessment of risk will also be influenced by their professional experience, and trial risks as seen by parents may be very different to those perceived by trial staff. Moreover, relative risk, a concept familiar to clinicians accustomed to the uncertainty that is intrinsic to medical practice, could seem very different to parents for whom even improbable risks may be intolerable [46]. Parents and investigators agreed that the risks associated with participation in clinical anaesthesia or surgery research was the most important information to disclose, but parents were more convinced than the investigators of the importance of disclosing the benefits of the research [47]. One interpretation is that risks resonate more deeply with parents and they therefore need to balance these with positive information. Similarly, clinicians viewed the CANDA trial as a low risk, routine trial of broadly equivalent interventions [48] but many parents consenting to the trial viewed it as offering an otherwise unavailable option which might save their baby's life. To the clinician research can be considered low risk when it involves no greater risk than conventional treatment. To the parent everything is high risk because they have a sick child.
The contrast between parents' and clinicians' and trialists' views warrants further investigation but it is unlikely that parents always approach decisions about trials in the way imagined by some – a rational and mechanistic process of weighing up all of the available information before reaching a decision [45,49]. Associated with a 'rational choice' model of trial decision-making is the assumption that communication is a mechanistic and technical matter of assembling and transmitting the 'correct' information but successful communication about trials or any other topic is more than a technical matter [50]. It is a dynamic, social and emotional process in which the parties interact to construct meaning. Their interaction will be shaped by the particular context and nature of the trial, the hopes, fears, expectations and obligations the parties bring to the trial discussions, and those that continually emerge during the course of discussions and in their later reflections.
Individual and group differences in trial perceptions and information preferences
Even in life threatening situations, not all parents will experience trials as adding "stress to an already stressful situation" [22]. Wide individual differences in parents' responses to being approached about trials have been reported with 20% reporting that the trial reduced their anxiety, 56% felt it made no difference and 24% reporting that the trial increased their anxiety [51]. Associations between anxiety and the decisions parents make about trials have also been observed. Parents who decline trials report higher anxiety, rate the risks of the trial as higher [52] and are more likely to fear randomisation [53], but one study found consenting parents were more anxious than those who declined [54]. Rather than being straightforward the relationship between anxiety and trial decisions may be mediated or moderated by factors such as trust in medical research [55] and the parent-practitioner relationship [56].
Parents also vary in their preferences for trial information [57], some wanting more information whilst others feel overwhelmed by information and want less [58]. Miller and colleagues reported a trend for more information to be associated with greater parental anxiety and less control [59], which may be exacerbated by detailed information on the toxic effects of treatment or mortality rates. Of course, the anxiety experienced by parents will itself impact on their experience and interpretation of the trial information and discussion [60]. In one study of parents of children considering an oncology trial, those with higher levels of anxiety were more likely to report that the risks associated with trial entry were not clearly explained [61]. Getting the level of information right is an important challenge – one study of parents' attitudes to their child's enrolment in a trial of antiretroviral therapy reported a significant relationship between perceiving that information was lacking and unwillingness to enrol in future trials [62]. Similarly Tait and colleagues report that parents who were more satisfied with the clarity and quantity of trial information were more positive about the trial than parents who were dissatisfied with the information [63]. Researchers have suggested a 'goodness of fit' approach between the person and the amount of information given [64].
Discussions about trial participation may have lasting effects for those who decline trials as well as those who accept. Non participants report inaccurate [65] or even harmful misconceptions [48] after being approached about research. Those conducting trials need to understand the processes that underpin these difficulties if they are to be ameliorated. Concern that those who decline or drop out may come to regret their decision [65] might be extended to consider how individuals approached about trials may differ in their tendency to trust others. Evidence suggests that a substantial minority of people find it difficult to trust other people [66] and are less likely to perceive relationships with health professionals as supportive [67]. Such people may be especially at risk of harmful misconceptions if trialists cannot vary their approach according to individual needs. Indeed, the assumption that 'good' communication is synonymous with providing information that is ever more specific or systematic runs counter to the requirement, in complex discussions about trials, to select and tailor according to individual need [59]. There is, of course, a baseline level of information necessary for informed consent [25]. Beyond this, trialists and ethicists could consider how far communication about trials can be configured around the needs and preferences of individual parents [68] as well as the social norms of the setting [25].
Of the few studies that have considered group differences in trial recruitment, most have focussed on families of children with leukaemia. How parents from different socio-demographic backgrounds experience trials has not been explored, though researchers have investigated group differences in rates of trial participation and researcher-defined understanding of trials. Miller and colleagues [59] report that low socio-economic status (SES) and membership of a minority ethnic group (in this case largely Hispanic) was associated with lower understanding of key components of informed consent. A related study reported no differences in likelihood to enrol a child in a trial between English speaking majority parents, English speaking minority parents and non-English speaking minority parents [69]. Parents in the non-English speaking group asked fewer questions than parents in the other groups. The authors link this to Latino cultural norms such as 'respeto' and 'fatalismo' which discourage questions and interactivity and encourage the idea that God will decide the fate of the child [70]. Emphasising the diversity that also exists within different ethnic groups [70] the authors point out that such traditional values are far from uniform within Hispanic groups and tend to be less common in immigrant groups with high SES.
Beyond oncology, research on group differences is limited. Harth and Thong reported that, among other characteristics, parents who put their child forward for an asthma trial were less educated and from less advantaged backgrounds than parents who declined [71] while a study of factors influencing consent to a neonatal trial found no such differences [28]. Tait and colleagues [72] report that greater understanding of 11 key elements of consent (to clinical anaesthesia or surgery trials) was positively associated with parents' educational level but not ethnicity and that understanding was higher in consenters than non-consenters.
Of course, a parent can only understand and recall information if it has been provided in the first place. Miller and colleagues [59] report that practitioners provided less information to ethnic minority parents and parents with low SES and were less likely to ask their opinion or encourage questions. Simon and colleagues [69] also found that non English speaking minority groups were given less information and clarification of features such as randomisation and right to withdraw than either the English speaking majority or minority groups.
Noting how the content of trial discussions and researcher-defined quality of the consent were linked to parental ethnicity or clinician attitude towards parental ethnicity, Simon and Kodish [70] emphasise the danger of making assumptions based on ethnicity or socio-economic factors, which may contribute to the omission of important information for families. However, reports that lower SES is related to less information giving by practitioners, but also to lower anxiety and a greater sense of control among parents [59] point to competing interpretations of group variations. They could represent clinicians' attempts to empower parents by tailoring communication to their needs and avoiding overwhelming them with information.
While it is often reported that parents from minority groups or disadvantaged backgrounds are less likely to understand trials (e.g. [73-75]), little research has investigated how parents from different social and ethnic groups experience being asked to consider a trial for their child. Research of this sort could inform efforts to meet the needs of families from different backgrounds when they are approached about trials.
Although qualitative research on the attitudes, understanding and concerns about medical research has been conducted amongst adults in developing countries (e.g. [76]), the authors are not aware of any qualitative studies that report the experience of being asked to consider a randomised controlled trial for a child, from the perspective of parents in developing countries. Important questions surround the recruitment of children to trials in developing countries and researchers conducting such trials undoubtedly face particular challenges in managing recruitment in societies which are more family and community orientated and less individualistic than developed countries [76]. This represents another important gap in the literature.
Faith and trust in medical care
Good relationships and communication between parents and their clinician offer parents a sense of understanding, safety and trust [59] which in turn may influence decisions about trial entry [77]. Parents considering a cardiac trial expressed a preference for the trial to be explained to them by their cardiologist or surgeon rather than the principal investigator or the research coordinator suggesting that the clinical relationship provides some comfort for families when considering trials [78]. By contrast, lack of confidence in the doctor has been associated with increased difficulty in decision making about trial entry [1]. The relationship with the clinician and its impact on the decision making process may be different across trials. Whilst oncology and neonatology tend to see good rates of trial participation, trial discussions in these settings often take place within hours or days of the family's first meeting with the clinical team suggesting that trust is not necessarily dependent on the longevity of a relationship. Indeed, community-based trials where families will likely have long-standing relationships with their doctors tend to see much lower rates of participation [37]. Evidence that doctors who have long-standing relationships with families fear that an approach about research might damage the relationship [79] and might therefore be inclined to present trials less favourably, throws some light on these findings though more research is needed comparing trials conducted in different clinical settings to better interpret these patterns.
Others suggest that timing is crucial and discussing research may seem irrelevant and even insensitive in the immediate aftermath of diagnosis of life-threatening illness, unless handled in a way that allows families to feel the overall care and wellbeing of the child is the clinician's main aim [80]. But this raises yet another tension for trialists to negotiate – the therapeutic misconception. Thought to be at the centre of one of the most resilient misunderstandings about research, the therapeutic misconception describes the belief that the purpose of a clinical trial is to benefit the individual patient rather than gather data to develop scientific knowledge (National Bioethics Advisory Commission referenced in [81]). It can be a considerable struggle for patients and families to separate discussions about treatment options and management from those about trial participation [82,4,10], particularly when faced with serious illness. Adult patients with advanced cancer interpreted their doctor's offer to participate in a Phase 1 trial as meaning that the trial was the right thing for them [83]. However, the therapeutic misconception may itself be a mislabelling of the situation: a parent's hope that a child may receive a treatment that is later shown to be better than the standard treatment is not fundamentally misinformed, as this is itself the purpose of the trial [23]. The other features of trials such as follow-up visits and extra time spent discussing the child's condition are often perceived by parents as direct benefits of participation (e.g. [84-87]). Given the complexities of trial communication when a child's life is threatened, the therapeutic misconception does not necessarily reflect a straightforward failure of the researcher to adequately explain the research methodology or of the parent to understand it. Indeed, it may be harmful for parents to abandon the therapeutic misconception altogether, as doing so could be tantamount to losing hope and trust in medical practitioners. As Snowdon and colleagues suggest, where care and research become completely disconnected in people's minds, the result may be an "injurious misconception" whereby simply being approached about a trial triggers a disproportionate sense of risk and threat [48].
Putting others first?
Altruism is frequently cited by researchers and parents as a motivation for consenting to paediatric trials, but the weight of the obligation to protect one's child means it is unlikely that it is an overwhelming consideration when parents are deliberating whether to enter their child in a trial. Regardless of whether they declined or accepted, the primary concern for parents considering an anaesthesiology trial was the child's safety [88]. Similarly, while parents believe that clinical research with children is important, they do not necessarily wish to involve their own children in that research [7] and their primary objective is to protect their child from harm [8]. When considering hypothetical, non-beneficial research, Reynolds and Nelson report that parents and children would quickly evaluate the procedural risks of a study and reject or provisionally accept on that basis before considering reasons for participation such as altruism [45]. Hence, fathers of children with cancer were far more likely to reinforce altruism as a reason for research participation when the research was non-invasive but where the research involved the child physically, altruism was not seen as a sufficient reason for taking part [5]. Parents of children in Phase 1 cancer trials where the benefits to others most clearly outweigh the individual gains, spoke of 'carrying on the fight' and 'not being ready to let go', while others clung to the hope of a miracle cure or buying enough time for some other treatment to become available [89]. Understandably, participating in such a trial was seen by parents as a way to do everything they could for their child.
Nevertheless, around two thirds of discussions between parents and practitioners about childhood cancer trials contained some mention of altruism, though it was usually raised by clinicians rather than families [90]. There was no evidence that the mention of altruism affected trial recruitment rates suggesting that it was not coercive, but a number of other studies report altruism to be a motivating factor for parents considering trial entry [28,91,92]. In some cases this could be an artefact of the study design: where people are asked retrospectively to indicate a rationale for their actions they can endorse motivations which construct these in a socially desirable light whilst free of other demands. Though it is questionable how far altruism motivates parents to include their children in trials, they may use it functionally as a way of justifying their decision after it has been made. This might be particularly likely where a child has a poor outcome or if a child dies. For bereaved parents, altruism may be a way of finding some small comfort that their child might live on through the lives of those who benefited from the trial [90], and in this way a trial might give some kind of meaning to a loss that otherwise seems unjust and meaningless [89]. It can also be a way of making sense of a complex situation. Entering a child into a trial confers no guaranteed benefit whilst introducing an element of uncertainty into the child's treatment. In reflecting on such a difficult decision parents might look for some positive anchor with which to justify what in some respects is a counterintuitive step. It may be that the promise of benefit to a "future generation" provides such an anchor [90]. It is difficult to uncover these nuances in how families make sense of trials in studies that use questionnaires. The same criticism applies to qualitative research which treats participants' accounts as faithful descriptions of their experiences, rather than as constructions which need to be interpreted in the light of the social context and functions they serve [93,94].
Sharing responsibility with the child
We have argued that responsibility rather than autonomy is central to understanding the situation of parents when they are approached about trials in paediatrics. However, parents face a new set of issues when their child is old enough to have an opinion on whether they wish to participate in a trial, when the need to protect one's child might come into conflict with the child's wishes. The available evidence indicates that parents negotiate this by allowing the young person to have "their say" in the decision, whilst retaining responsibility for the final decision themselves [95]. Under certain circumstances parents may encourage or persuade children to take part in research: parents of children who had asthma, diabetes, epilepsy or no chronic condition who were considering hypothetical trials [96] and mothers of children with diabetes considering entry to a real trial [84] were prepared to persuade their child to enter a study if they believed that the benefits of participation outweighed the child's fears. Particularly where the child has a life-threatening illness some parents will exclude the child from the decisions about research altogether in order to protect them from distressing information, while other parents will include the child in discussions but make the final decision themselves [97]. This contrasts with studies of hypothetical trials where parents tend to report that the decision-making process was a collaboration with their child. It is likely that the degree of collaboration is related to the threat to the child [7,96,98] and to the cognitive capacity of the child [96]. Considered alongside a study examining willingness to participate in hypothetical asthma trials which suggested that adolescents were significantly more willing than parents to enrol in above-minimal risk research [99], this raises further complexities for paediatric trialists. The parents' move from active participant to passive observer in trial decisions as their child grows older is an important area for future research [7].
• In contrast to the autonomy that typifies the situation of adults when they are themselves approached to participate in trials, when parents are asked to consider entering a child in a trial their decision might best be characterised as one that embodies an obligation of responsibility.
• Some parents will see trials as a threat to their child or fear regretting their decision, whilst others see trials as offering hope of better treatments for their child. Almost all parents cherish their role in protecting children and want to secure the best outcome for them, but many are aware of complexities of the medical and research context and how this constrains their fulfilment of this role.
• The conduct of trials with children may benefit from a better understanding of the special situation of parents and their particular need for support that allows them to retain a sense that they have safeguarded their child's interests.
• Research is needed on how this may be realised in practice whilst observing medico-legal requirements. Thinking of consent as a social recognition of the parental role and aiming for 'best possible consent' may open up opportunities to develop approaches to trial communication which incorporate the flexibility for parents to construct what is for them a meaningful understanding of the research, as well as a meaningful exercise of parental responsibility.
Competing interests
The authors declare that they have no competing interests.
Authors' contributions
VS and BY contributed equally to the preparation of this manuscript.
We would like to thank Professor Paula Williamson for her comments on an earlier version of the manuscript and the reviewers for their helpful suggestions.
The preparation of this paper was supported by a project funded by the NIHR Health Technology Assessment programme (project number 05/516/08). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the Department of Health.
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