When York Professor Sarah Flicker tried to initiate a sexual health survey involving youth without parental consent, she found the barriers almost impenetrable, but this feisty researcher didn’t give up.
"We kept running into obstacles. People kept saying, ‘you can’t ask a 13-year-old about sex’," says Flicker. But she did.
Despite the obstacles, Flicker devised a way around requiring parental consent, while still keeping the integrity of the research intact and appropriately addressing the ethical issues. Getting parental consent would drive away the very youth she was trying to reach, those who needed to have a voice in this kind of research, she says.
Right: Sarah Flicker
The whole parental consent issue stymies Flicker. "A person can access an abortion at age 13, but they can’t give consent to participate in research regarding sexual health. So rather than parental consent, we decided to adopt a community-based participatory approach. We went through youth agencies and had a trained social worker on board. We also got ethical clearance from York and the University of Toronto."
That’s how the Toronto Teen Survey was born, a collaborative approach with Planned Parenthood Toronto and in partnership with Toronto Public Health, the Ontario HIV Treatment Network (OHTN), York University and the University of Toronto, along with co-principal investigator June Larkin, vice-principal of New College, U of T. The OHTN provided $229,000 in funding for the research. The eventual goal of the survey is to make sexual health services better for Toronto youth.
The survey looked at the accessibility and relevance of sexual health services in the Toronto area for a diverse group of teens.
"We spent a lot of time making sure youth understood what they were consenting to. We really wanted the teens participating to understand what the survey was about so they could provide informed consent," says Flicker, a professor in the Faculty of Environmental Studies at York.
The survey was unique in that it did not seek parental consent, but also because it was a youth-led initiative. Some youth were involved in the designing process; others were rigorously trained by Planned Parenthood Toronto to go into various agencies, shelters and after-school programs to conduct interactive surveys with their peers.
"This kind of research usually gets done on youth instead of with youth," Flicker says. "But our sense is we got a much more honest response as a result and we were able to reach youth that don’t usually get reached."
Barriers to doing this kind of research still exist and that’s hugely frustrating to other researchers. Flicker says research on the sexual health of youth is badly needed and they are being excluded from research that could improve their health because researchers are unable to navigate the parental consent procedures.
"This is really important. We need to be talking about how we can do research with youth and about their sexual health," she says. "We’re not seeing good sexual outcomes for youth and to keep our heads in the sand is not helpful."
According to another study, the "Canadian Youth, Sexual Health and HIV/AIDS Study: Factors Influencing Knowledge, Attitudes and Behaviours", two per cent of Grade 7 students in Canada report having sexual intercourse. By Grade 11, 40 per cent of boys and 46 per cent of girls report being sexually experienced.
Meanwhile, the Canadian sexually transmitted infections surveillance report by Public Health Agency of Canada shows Canadian youth, ages 15 to 24, as having the highest rates of sexually transmitted infections along with the highest increases. So sexual health research with adolescents is needed, says Flicker.
To help other researchers navigate the parental consent issue, Flicker and U of T PhD candidate Adrian Guta wrote an article about how to do collaborative, community-based research in an ethical manner with youth on this sensitive topic. The article – "Ethical Approaches to Adolescent Participation in Sexual Health Research" – is published in the January 2008 issue of the Journal of Adolescent Health. The article also prompted an editorial on the subject in the same issue.
"By the time we went through the ethical review process, we had a really good case illustrating how to go about doing research with youth," says Flicker.
There is an ethical way around parental consent, she says, by using a community-based approach to the research, with attention to youth-friendly protocols and consent guidelines along with well-trained research staff and peer researchers, while maintaining confidentiality and anonymity for the participants, especially when research poses minimal risk.
Flicker and colleagues have another article coming out in the journal of Health Promotion Practice – "Survey Design from the Ground Up: Collaboratively Creating the Toronto Teen Survey" – about the practical aspects of conducting collaborative community-based sexual health research with youth.
The Toronto Teen Survey was completed in August 2007 and data is still being compiled. The preliminary data, however, does give an emerging picture of the sexual health of youth in the GTA.
Out of the 1,200 youth surveyed between the ages of 13 and 18, 35 per cent said they were sexually active. Eight per cent of females and six per cent of males surveyed had been involved in at least one pregnancy. Eighty-five per cent of those surveyed were of a visible minority, 33 per cent were born somewhere other than Canada and seven per cent were lesbian or gay. Ten transgender youth also participated.
Some of the survey data surprised Flicker. "They said the number one place they’re getting their sex information from is their friends, but they also said they wanted to get their sex information from professionals: teachers, doctors and nurses. So we’re seeing a big disconnect between where they want to get their information from and where they’re actually getting it from."
Another surprise was that the information these youth were most interested in revolved around healthy relationships as opposed to information about the act of sex itself.
"They desperately need a place to ask their questions. Questions like: How do you know when you’re ready? How do you tell your boyfriend you’re not ready?" says Flicker.
As the numbers are crunched, Flicker is confident more surprises will emerge. In the meantime, she hopes other researchers will be able to use her suggestions to think about ethical approaches to adolescent health research differently and start doing research with youth that will impact on their health in a positive way.
For more information, e-mail Sarah Flicker at firstname.lastname@example.org.
By Sandra McLean, York communications officer.