Referring and reporting research participants at risk: views from urban adolescents.
ABSTRACT Researching developmental risks of urban youth raises ethical concerns when an investigator discovers a participant is in jeopardy. This study collected data on 147 seventh, ninth, and eleventh graders' views of 3 investigator options: (1) taking no action and maintaining confidentiality, (2) reporting the problem to a concerned parent or adult, and (3) facilitating adolescent self-referrals. Participants judged these options within the context of 5 risk domains: substance abuse, child maltreatment, life-threatening behaviors, delinquency, and shyness. Judgments of reporting options were related to grade and ratings of risk severity, but not to moral reasoning. Confidentiality was viewed favorably for risk behaviors of low perceived severity or for which the consequences of adult discovery might introduce greater risk. Confidentiality was viewed unfavorably and reporting to adults favorably for child maltreatment and threats of suicide. Self-referral was viewed favorably across all grades and risk behaviors. Implications of adolescent perspectives for research ethics are discussed.
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ABSTRACT: This paper reports a study describing the experiences and perspectives of homeless young people as research participants. 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. 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. 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. 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.Journal of Advanced Nursing 07/2006; 54(6):647-52. DOI:10.1111/j.1365-2648.2006.03853.x · 1.69 Impact Factor
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ABSTRACT: Protection of human subjects, particularly members of at-risk or vulnerable populations, is an essential concern for survey researchers and the Institutional Review Boards that govern them. Little is known, however, about the effects of mandatory reporting of suspected abuse or neglect on retention rates in field data collection studies. This paper examines the impact of mandatory reporting of suspected child abuse on retention rates in an at-risk sample. The National Survey of Child and Adolescent Well-being (NSCAW) is a national, longitudinal study of children and families who have come into contact with the child welfare system. Mandated by Congress in 1996, this study is sponsored by the Administration for Children and Families (ACF). Five waves of interview data were collected from the first cohort, NSCAW I. A second cohort was drawn in 2008, with NSCAW II now in its second wave of data collection. Data from both cohorts will be considered in evaluations. The few studies examining mandatory reporting effects on retention rates suggest limited risk for negative impact on retention. This paper will analyze retention rates of NSCAW respondents in waves following a mandatory report, and whether demographic characteristics (e.g., child gender, child and caregiver age, child and caregiver race/ethnicity, caregiver education, caregiver relationship to child, income level) or other variables (e.g., child developmental status, type of maltreatment bringing family into the study, caregiver depression, caregiver substance dependency, and child discipline) differ between reported and nonreported cases.
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ABSTRACT: The point of departure in this article is a client study with children who had received services from child welfare, school counselling or child psychiatric clinics, compared to a cohort study targeting all children in the same community. It discusses whether parents' reservations towards letting their client children participate in the study indicates a fear of the researchers interfering in family life, and how the choice of research strategies influence the images constructed of client children and their families. A common finding in the two studies was that the children themselves provided the most positive information about their lives. It is argued that adult images of children as either vulnerable, and thus in need of protection, or competent, and thus with an ability to participate, influence access to, as well as construction of, client children's lives.International Journal of Social Research Methodology 01/1999; 2(3):191-202. DOI:10.1080/136455799295005 · 1.07 Impact Factor