B Josephine Ensign1. 1. Psychosocial and Community Health, University of Washington, Seattle, 98195-7263, USA. bjensign@u.washington.edu
Abstract
AIM: This paper reports a study describing the experiences and perspectives of homeless young people as research participants. BACKGROUND: Worldwide, homeless young people are an especially vulnerable group due to their age, socio-economic disadvantage, and stigmatized status, and can suffer from human rights abuses. Researchers and advocates have noted that we know relatively little about the effects of research participation on adolescents in general, and much less about marginalized adolescents such as homeless young people; nor do we know about their perceptions and experiences as research participants. There is a lack of studies reported to help guide the ethical conduct of research with homeless young people. METHODS: Individual interviews with 30 street and clinic-based homeless young people aged 15-23 years and two focus groups with a total of 13 additional homeless young people were conducted in a large West-coast city in the United States of America. The study took place between January and June 2003. Interviews and focus groups were tape-recorded, transcribed, preliminarily coded, with final coding crosschecked and verified with a second researcher. FINDINGS: The majority of young people reported positive experiences as research participants in the past. None reported coercive research experiences; however, many stated that they would have liked more information about how the data they provided would be used by the researchers. All participants reported that it was important to be provided with research incentives, and thought that small monetary or pre-paid phone cards were appropriate incentives. They did express concerns that larger research incentives could be coercive and harmful for some homeless young people. CONCLUSION: Researchers working with homeless young people should seek greater input from them on the overall design of the study, especially concerning the appropriate use of research incentives.
AIM: This paper reports a study describing the experiences and perspectives of homeless young people as research participants. BACKGROUND: Worldwide, homeless young people are an especially vulnerable group due to their age, socio-economic disadvantage, and stigmatized status, and can suffer from human rights abuses. Researchers and advocates have noted that we know relatively little about the effects of research participation on adolescents in general, and much less about marginalized adolescents such as homeless young people; nor do we know about their perceptions and experiences as research participants. There is a lack of studies reported to help guide the ethical conduct of research with homeless young people. METHODS: Individual interviews with 30 street and clinic-based homeless young people aged 15-23 years and two focus groups with a total of 13 additional homeless young people were conducted in a large West-coast city in the United States of America. The study took place between January and June 2003. Interviews and focus groups were tape-recorded, transcribed, preliminarily coded, with final coding crosschecked and verified with a second researcher. FINDINGS: The majority of young people reported positive experiences as research participants in the past. None reported coercive research experiences; however, many stated that they would have liked more information about how the data they provided would be used by the researchers. All participants reported that it was important to be provided with research incentives, and thought that small monetary or pre-paid phone cards were appropriate incentives. They did express concerns that larger research incentives could be coercive and harmful for some homeless young people. CONCLUSION: Researchers working with homeless young people should seek greater input from them on the overall design of the study, especially concerning the appropriate use of research incentives.