Homeless young people warn researchers about the dangers of cash incentives
Homeless people in their teens and early 20s are happy to take part in health research projects, but feel that being offered large financial incentives to participate can be harmful, according to a study in the latest UK-based Journal of Advanced Nursing.
Dr Josephine Ensign from the University of Washington’s School of Nursing explored the attitudes of young homeless people - who are increasingly being recognised as medically vulnerable members of the community - through individual interviews and focus groups.
She discovered that although the majority of the 43 study participants were happy to receive small incentives to take part in research, they felt that useful items worth up to $10 dollars were sufficient.
One male participant recalled how some homeless street youngsters he knew were given $60 to take part in a study –one used the money for heroin and almost died as a result.
He reflected the popular view that phone cards, coffee vouchers or useful items like backpacks and clothes were much more appropriate. “Things we need and that won’t hurt us” he stressed.
“This is an important finding” says Dr Ensign. “Most of the young people we spoke to were keen to take part in research, but felt that monetary incentives of more than $5 to $10 could be coercive and harmful to young people, especially if they were substance abusers.
“There are international guidelines that state that research remuneration should not be so high that it is coercive, but there are no clear guidelines as to what that level is. It is down to researchers to make value judgements based on the individual project and the study participants involved.
“In the case of this study, which looked at the attitudes of 15 to 23 year-olds, we felt that giving each person who took part a $10 phone card and providing refreshments was appropriate for us and acceptable to them. Feedback from staff who helped us recruit the homeless young people indicated that they believe they would have been happy to take part even without these small incentives.”
The young homeless people featured in the study were also keen to get involved in how research studies were designed and to know more about how their contribution would be used.
“I’m not really sure what happens to what we give them after they’re finished” said a 20-year-old girl, whose view was shared by many who took part in the study. “I’ve heard it gets written up somewhere, but I’ve never seen it. What do they do with it anyway?”
They also thought that they should be able to take part in research without needing consent from their parent or guardian.
As one 16-year-old said: “If we’re out there taking care of ourselves and our parents don’t really have anything to say about our lives anymore, then we should be able to say what we want to do, including research.”
Surveys that relied on form-filling were also unpopular and young homeless people preferred to speak to researchers. They talked about forms with complex terms and long words and said they didn’t have the patience to answer a large number of questions on paper. They also disliked long consent forms and often asked researchers to summarise them verbally for them.
“I’d rather someone asked me the questions and not make me read a lot of words” was one representative comment.
“This finding did not surprise us as most homeless young people in the USA have had their formal schooling interrupted by multiple foster care placements or other physical moves and many have lower reading abilities” says Dr Ensign, associate professor of psychosocial and community health.
Most of the 30 young people who took part in the individual interviews and the 13 who got involved in focus group discussions felt that their past experience of research had, on the whole, been positive.
But they felt that if researchers involved them more in the design of surveys, offering sensible incentives and providing feedback at the end of the study, it would encourage greater participation.
“Most research studies on youth homelessness appear as either articles in academic journals or government planning documents, so it’s not surprising that young people don’t see how their contribution is used” points out Dr Ensign.
“We are keen to see researchers share their findings with young people in an informal way, so that they can see how valued their views are.
“For example we have been working with a former homeless youth who is writing an article on our study for Mockingbird Times, a Seattle-based newspaper aimed at young people who are homeless or in foster care. It is also widely read by the people who look after them, which is equally important. “
There is a growing body of research documenting the multiple physical, mental health and social health needs of homeless young people, says Dr Ensign.
“Including homeless people in health research projects is very important as life on the streets often includes substance misuse, survival sex, exposure to violence and lack of basic hygiene and healthcare.
“Young homeless people can be particularly vulnerable and bad experiences can often make them highly distrustful of adults and institutions.
“We hope that our study will help other researchers develop ethical guidelines for research projects with homeless young people. This will enable healthcare professionals to develop services that meet their needs in a sensitive, effective and appropriate way.”
Annette Whibley | alfa