Ethical issues in research with homeless youths Josephine Ensign & Seth Ammerman Accepted for publication 1 December 2007 Correspondence to J. Ensign: e-mail: firstname.lastname@example.org Josephine Ensign DrPH FNP Associate Professor Department of Psychosocial and Community Health, University of Washington, Seattle, Washington, USA Seth Ammerman MD Associate Clinical Professor Department of Pediatrics, Division of Adolescent Medicine, Stanford University, California, USA ENSIGN J. & AMMERMAN S. (2008) ENSIGN J. & AMMERMAN S. (2008) Ethical issues in research with homeless youths. Journal of Advanced Nursing 62(3), 365372 doi: 10.1111/j.1365-2648.2008.04599.x Abstract Title. Ethical issues in research with homeless youths. Aim. This paper is a report of a study to documente researcher, healthcare provider and programme administrators experiences with ethical issues in research with homeless youths in North America. Background. While there are legal and ethical guidelines for research with adolescents and with vulnerable populations in general, there are no specific guidelines for the ethical conduct of research with homeless youths. Methods. Using a web-based questionnaire, healthcare and social service providers, programme administrators and researchers working with homeless young people throughout the United States of America and Canada were surveyed in 2005. The survey group consisted of 120 individuals; a total of 72 individuals completed the survey. Survey questions included experiences with using incentives in research with homeless youths, consent and experiences with ethics review boards. Numerical data were analysed using frequencies and cross-tabulations. Text data were analysed qualitatively. Findings. Researchers doing mental health and/or substance use research tended to use money as a research incentive, whereas healthcare providers and programme administrators tended to use non-monetary incentives. The majority of respondents reported using written consent for research from homeless youths, including minors. Respondents reporting difficulties with ethics review boards were mainly involved with intervention research. Conclusion. Consensus is needed from a variety of stakeholders, including homeless youths and service providers, on use of various types of research incentives for different types of research, as well as use of consent for homeless youths who are minors. Keywords: adolescent health, ethics, healthcare, homeless youths, research ethics, research incentives Introduction Homeless young people are a relatively large and marginalized subpopulation of those experiencing homelessness. Homeless youths are found in all major urban areas of the world, including substantial numbers who live in the affluent countries of North America (Pais 2002b). There are no reliable estimates of the number of street children worldwide. This stems from differences in definitions of who is a street child (including age span), as well as the fact that street children represent a highly mobile population with an understandable distrust of adults in authority. Although RESEARCH METHODOLOGY JAN 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd 365 homelessness can occur in rural areas, street children are concentrated mainly in urban areas (Pais 2002a). Common risk factors for homelessness/street-living in all countries include poverty, family discord, abuse and neglect, parental mental or physical illness and death, or parental substance abuse. Both Canada and the United States of America (USA) have national efforts to end homelessness, including special emphases on ending youth homelessness as a way of intervening early to prevent chronic homelessness (US Interagency Council on Homelessness, http://www.ich.gov; Canada National Homelessness Initiative, http://www.homelessness.gc.gov). These national efforts have been criticized as being politically motivated and shortsighted as to the true causes of homelessness (Whitehead 2006, Crowe 2007). The national efforts have highlighted the need for access to, use and conducting of timely and appropriate research about youth homelessness to help guide services, policies, and interventions. The realities of a homeless life, including substance use, survival sex (trading sex for food, clothing or shelter), increased exposure to weather extremes and to violence, lack of safe reliable shelter and basic hygiene needs, place homeless youth at risk for many negative health and social consequences (Taylor 2001, Boivin et al. 2005). Homeless youths disproportionately suffer from serious health problems compared with their non-homeless peers. A prospective cohort study of mortality in homeless youth in Montreal, Canada found a mortality rate 11 times that of youth from the general population; the main causes of death were suicide and drug overdose (Roy et al. 2004). As a vulnerable group, homeless youths are the focus of an increasing body of research documenting their unique health and social needs. Research and practice indicate that homeless young people typically avoid using medical and other services targeting older homeless adults and families, which are not developmentally appropriate for them (Ammerman et al. 2004, Ensign 2004). Healthcare clinicians experienced in providing appropriate health and social care to homeless young people have helped establish and staff clinics and outreach programmes throughout North America. Researchers, direct service providers and programme administrators have different uses for and experiences with conducting, participating in, and using research. While there are legal and ethical guidelines for research with adolescents (English 1995, Levine 1995) and with vulnerable populations in general (Ruof 2004), there are no specific guidelines for the ethical conduct of research with homeless youths. Ethical issues in research with homeless youths that have emerged include questions over the ability of minor homeless youths to consent to participation in research, and what constitutes appropriate research payments for homeless youths (Rew et al. 2000, Ensign 2003). Children are considered a vulnerable group, and are especially vulnerable when not appropriately protected by parents or guardians, as is the case with street-involved or homeless youths (Richter et al. 2007). Researchers working with homeless youths in less-developed and industrialized countries have questioned the appropriateness of use of monetary research incentives, especially for substance-using youths (Hutz & Koller 1999). There is a lack of information on the pattern of use of different forms of research payments, information on the types of consent used for homeless youths who are legally minors, and issues related to institutional human ethics review boards [Institutional Review Boards (IRB) in the USA; research ethics boards (REBs) in Canada] of youth homelessness research. Guidelines for the ethical conduct of research involving humans use an international human rights framework, beginning with the 1948 Nuremberg Code of ethics and the Universal Declaration of Human Rights (Sugarman et al. 1998). In 1964, the World Medical Association established a code of research ethics (the Declaration of Helsinki), based on the Nuremberg Code (World Medical Association 2007). Continuing scientific advances, combined with breaches in research ethics with humans, led the US government to establish The National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research, whose members wrote the Belmont Report in 1979 (Sugarman et al. 1998). The Commission looked for commonalities among competing ethical theories and distilled three basic principles from these theories: (1) respect for persons, (2) beneficence, and (3) justice (Levine 1986). The three basic ethical principles were subsequently adapted by the Council for International Organizations of Medical Sciences, an affiliate of the World Health Organization (CIOMS 1991). The USA and Canada both have national bioethics advisory bodies and guidelines for the conduct of research with humans. In Canada, this is referred to as the Tri-Council Policy Statement (Canadian Institutes of Health Research et al. 1998), and in the USA it is called the Common Rule (US Department of Health and Human Services 2007). Based on these national guidelines, university-affiliated researchers in the USA and Canada are required to have their research reviewed and approved by institutional research ethics review boards. These boards are typically called IRBs in the USA and REBs in Canada. Researchers who work with marginalized young people in Canada and the USA have pointed out that IRBs/REBs have become much more rigid over the past decade or so, in many cases leading to an adversarial system (Leadbeater & Glass 2006). J. Ensign and S. Ammerman 366 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd Despite national efforts to end homelessness, researchers, healthcare and other direct service providers for homeless youths across the USA and Canada often are working in relative isolation from each other. While there are obvious sociocultural and political differences between the US and Canada, researchers have pointed out that there are significant similarities in the situations of and research about homeless youths in Canada and the US (Boivin et al. 2005). An important next step is engagement of a variety of stakeholders from the US and Canada to seek their input on experiences with doing and using research, as well as their priorities for future research on youth homelessness. The study Aim The aim of the study was to document researcher, healthcare provider and programme administrators experiences with ethical issues of research with homeless youths in the USA and Canada. Design A descriptive web-based survey was conducted in 2005. Participants We used several sources to construct the sampling frame. First, we used the provider member list of the health care for the Homeless Clinicians Network. The Network is the largest forum in North America bringing together a multidisciplinary group of direct care providers who work with homeless people on health issues. We used e-mail addresses for all people in the Network member list who indicated in their work information that they worked with homeless youths. This list was expanded to include e-mail addresses of service providers and researchers in the USA and Canada who work with homeless youths, and who were known to the two authors. Next, we conducted a MEDLINE search for the past 10 years (19952005) to identify major researchers (with at least two publications on homeless youths) publishing results of research with homeless youths in North America. The types of research included a wide-range of health, behavioural and methodological foci, and represented different health and behavioural academic disciplines. The main search terms used were homeless youth(s), street children and runaway youth(s). We obtained the researchers e-mail addresses from the journal contact information. The resulting list (from both the MEDLINE search and Network list) included a total of 120 individuals representing all regions of the continental USA and Canada. Data collection We launched the survey in late January 2005 by sending out the URL-link in an e-mail letter inviting the 120 people in our sample to complete the questionnaire. In the letter, we encouraged people to share the URL-link with people they knew or worked with who might be interested in participating. We defined a homeless youth as anyone 1224 years of age who does not have a stable reliable place to live. Two weeks after the first e-mail, we resent the e-mail invitation to all 120 individuals as a reminder. Within a month of launching the survey, we had received a total of 72 responses (60% of number invited). Questionnaire development The survey questions (available from the authors) were developed by the two authors, based on input from an informal network of healthcare providers and researchers working with homeless youths. Several of the questions were adapted (after permission was obtained) from a Vancouver, BC community survey of researchers and service providers about their experiences with and utilization of homelessness research (Quantz & Frankish 2002). The Zoomerang zPro (MARKETTOOLS Inc., Mill Valley, CA, USA) survey software was used as the platform for the survey. A URL-link option was used to deploy the survey, assuring that no e-mail links could be traced. The questionnaire included a total of 17 questions, and took 1015 minutes to complete. Of the 17 questions, 16 were forced-choice with write-in options included. The questionnaire included questions as to types of research incentives people had used with homeless youths, types of consent procedures, special consent/assent procedures used for homeless youths under the age of majority and types of difficulties or delays with research approval by IRBs/REBs. Other questions focused on uses of and priority areas for future research (reported elsewhere). We concluded the survey with one open-ended question allowing for comments on anything respondents felt was missing from the questionnaire. The URL-link for the pilot survey was e-mailed to a group of 10 individuals working with homeless youths for their review and corrections; the questionnaire was then revised to enhance reliability and face validity. JAN: RESEARCH METHODOLOGY Ethical issues in research with homeless youths 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd 367 Ethical considerations The research was reviewed and approved by the Human Subjects Committee at the University of Washington. The URL-link to the revised survey was e-mailed to the survey group, along with an introductory letter (via e-mail) explaining the purpose of the research and signed by both researchers. In the introductory letter, participants were reminded not to write in any identifying information on the questionnaire. Return of a completed questionnaire was taken as consent to participate. Data analysis Statistical analyses mostly were of a descriptive nature, and numerical data were analysed using frequencies and crosstabulations using the analysis programme of the Zoomerang programme. We eliminated non-responders to a particular question from the denominator for the unanswered question only. Text data were analysed qualitatively, coded by hand, with themes identified from the coded responses. Transcribed files were entered into the Atlas-ti qualitative data analysis software (Muhr 1997), coded and checked for inconsistencies by the principal investigator (PI) (JE). After initial coding by the PI, a research assistant independently coded the material and then, together with the PI, refined the coding. Qualitative data management and analysis followed standard ethnographic techniques, and included latent and manifest content analyses, and frequency tabulations (Morse & Field 1995). Findings Respondents characteristics The majority of respondents described themselves as being healthcare providers and/or researchers (question allowed multiple responses), being university affiliated and urbanbased (see Table 1). Of the healthcare providers, the majority identified as being a nurse or nurse practitioner. One of the nine physicians identified as being a naturopathic physician. Four of the Canadian provinces were represented in the survey, as were 17 states in the USA. There were insufficient numbers of Canadian respondents or respondents from individual states to be able to analyse any differences between their responses. Research incentives In response to the question of type of research incentives used in the most recent research with homeless youths, respondents could endorse more than one item. Of the total of 48 responders to this question, money (n = 27) and vouchers or gift cards (n = 26) received the most endorsements, followed by food (n = 16), and none (n = 10). Twelve people stated that they used both vouchers/gift cards and money. In addition, one person wrote in that they provided socks, water bottles, flashlights (torches), candles and backpacks as research incentives. Another wrote in that they would like to know how much homeless youths as research participants are typically paid. We examined patterns of research incentives for people only reporting being researchers vs. those who identified as Table 1 Characteristics of survey group* Number (%) Description of major roles Current/former homeless young person 2 (28%) Researcher 25 (347%) Healthcare Provider 39 (542%) Programme Administrator 18 (250%) Other: Health Educator Educator/Professor Consultant/Programme Planner Social Worker/Case Manager 1 (14%) 2 (28%) 2 (28%) 3 (42%) Type of healthcare provider Nurse 9 (125%) Nurse Practitioner 13 (181%) Physician 9 (125%) Physicians Assistant 3 (42%) Social Worker 8 (111%) Other: Psychologist Street Outreach/Harm Reduction Activist 2 (28%) 2 (28%) Area working with homeless youth Urban 63 (875%) Suburban 8 (111%) Rural 4 (56%) University affiliated Yes 40 (556%) No 31 (431%) Canadian Province or USA Region Canada: British Columbia Alberta Ontario Quebec 2 (28%) 1 (14%) 3 (42%) 1 (14%) USA: Northeast/Mid-Atlantic Midwest Southwest/Southeast West/Pacific Coast 9 (125%) 12 (167%) 13 (18%) 29 (403%) *Denominator term varies across variables due to non-responders. Percentage may not equal 100 due to rounding; Multiple responses possible. J. Ensign and S. Ammerman 368 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd being healthcare providers and/or programme administrators (could also identify as a researcher). For research incentives we considered any use of money in combination with other forms of incentives as money, and any combination of incentives except money as no money. Out of the 17 researchers only, 13 (765%) used money as a research incentive; in contrast only 13 out of 34 (382%) healthcare providers and/or programme administrators included money as an incentive. In addition, more people doing mental health and/or substance use research used money as a research incentive, whereas more people doing physical health/medical research used non-monetary incentives. Research consent issues The majority of people responding to the question about type of consent procedure used in research with homeless youths stated that they used written consent (n = 37, 771%), and an additional 14 (292%) used oral consent. Two people wrote in that they requested and obtained IRB waiver of parental consent, one said that their written consent form only had to be marked and not signed, and one reported securing parental consent or consent of adult in loco parentis. If the research included people younger than age 18 years (in USA) or younger than age of majority for a specific Canadian Province, the majority (n = 37, 771% of total responses) reported that the young people could consent for themselves. Only eight (167%) reported that the young people had to have parental/guardian consent to participate, and all eight reported that their most recent research was intervention research. People added comments that they did not survey homeless young people under age 18 (n = 1), or that they allowed the young person to consent for themselves only if they were an emancipated minor (n = 1), that a representative of the Department of Child and Family Services (USA-based) could consent for them (n = 1), and that they were required to contact the Office of Community Services/Child Protection (USA-based) (n = 1). Experiences with university and/or institutional human ethics review In response to the question about whether they had experienced any difficulties or delays in having the research with homeless youths approved by a university or other institutional human subjects/ethics review committee, 22 (449%) answered No, 19 (388%) Dont know, and eight (163%) Yes. Three of the eight people answering Yes wrote in comments such as very, very tedious process, two wrote that the issues were related to research involving minors and whether/how to obtain waiver of parental consent, two mentioned difficulties with confidentiality in semi-public settings, and one person wrote not different from usual difficulties and delays. Five of the eight reporting IRB/REB difficulties stated that their most recent research was intervention research. Other information A total of 13 people added responses to the final survey question asking people to add comments on anything they wished we had asked. Five of the comments had to do with research difficulties in general, and specifically with IRBs/ REBs. A healthcare provider and programme administrator wrote the following: I support research, but the IRB process and evaluation requirements make it difficult to be part of due to limited staff, it can also be a serious burden to the service providers as they try to coordinate efforts in the field on behalf of the research. The academics really need the buy-in, understanding, and support of service providers/ direct staff to be successful. Finally, one person, who identified as being a healthcare provider, wrote a description of their own experience as a homeless teenager that included the following: I was an honor student living in my car in the late seventies(and) was counting the days until my 18th birthday, when I could be a real person and have human rights I do not study homelessness because it is too emotional for meit may take getting into my 70s before I can do it all the time without imploding. Discussion Study limitations The limitations of the current study include sampling bias. Only those providers, researchers and programme administrators who were included in sampling frame (or who were given the URL-link by colleagues) and who had an e-mail address available were included. Although we cannot tell how many of those invited completed the questionnaire, the apparent response rate was relatively high for web-based surveys (Balter et al. 2005). Non-responders (and those not included in the sampling frame) could have differed in important ways from respondents. Although efforts were made to extend the survey to include Canada, only seven respondents were identified as being Canadian. The results of the survey are specific to the North American (mainly USA) JAN: RESEARCH METHODOLOGY Ethical issues in research with homeless youths 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd 369 context, perhaps extending to other Western industrialized nations. Discussion of results The results of this research offer insights into researcher, healthcare provider and programme administrators experiences with ethical issues of research with homeless youths in North America. An intriguing finding of the survey was that healthcare providers and/or programme administrators doing physical health research were more likely to use vouchers/gift cards vs. money as research incentives, while researchers doing mental health and/or substance use research tended to use money as a research incentive. It is important to note that we did not ask the respondents to identify level of complexity of their research, or their reasons for using different types of incentives. It is possible that the researchers doing mental health and/or substance use research were doing intervention research with a need for retention of research participants; even small monetary payments for research participation can increase recruitment, response rates and retention (Kamb et al. 1998). While we did not ask researchers to identify their primary academic affiliation, it is a reasonable assumption that a majority of the researchers doing mental health/ substance use research were affiliated with university departments of psychology or sociology. Previous research indicates that researchers in these two academic disciplines are much more likely than their counterparts in any of the medical/ health disciplines to use participant payment (unfortunately the researchers did not separate out type of subject payments, and included use of vouchers with money) (Borzekowski et al. 2003). The difference between disciplines in terms of participant payment to homeless youths may be a reflection of differences in fundamental philosophical orientations and traditions. In addition, it may be that researchers working directly with homeless youths (such as healthcare providers) may be in a position to see and hear of negative ramifications of monetary payments to youths, and therefore, be more reticent to use monetary research payments. The guiding ethical principle in remuneration for participation in research is that it should not be based on level of risk of the research and that it should not be so high as to be coercive. However, there are no clear guidelines for deciding what are appropriate and inappropriate incentives (Fisher & Wallace 2000, Russell et al. 2000), and there is wide variation in monetary amounts of research payments even within the same study (Grady et al. 2005) Adolescents in general may be more swayed by monetary incentives than are adults (Petersen & Leffert 1995); by extension, it is more likely that adolescents experiencing poverty and/or homelessness are more influenced by the use of money as a research incentive (Bayoumi & Hwang 2002, Beauchamp et al. 2002). Findings from a qualitative study of homeless youths were that the young people themselves felt that monetary research incentives over 48 Euros/270550 (US$ 510 at time of study) could be coercive and harmful to some homeless youths (Ensign 2006). The current focus on increasing longitudinal and treatment intervention research with homeless youths, in which there may be more pressure on researchers to use monetary research incentives (to increase retention rates), increases the need for clear guidelines for use of incentives for this group of young people. This is not to imply that monetary research incentives for homeless youths are unethical, but rather that informative practicebased guidelines for researchers and IRB/REB members are needed. A useful next step would be to seek a consensus on parameters for use of different types of research incentives (and monetary amounts) for different types of research from a variety of stakeholders, including current and former homeless youths and service providers who work with them. Not surprisingly, survey respondents who reported IRB/ REB difficulties or delays, or who stated that they used parental/guardian consent for homeless youth minors participating in research, were involved in intervention research. Intervention research is likely to be deemed higher risk by IRBs/REBs, weighing towards requiring parental/guardian consent, as well as necessitating a more in-depth IRB/REB review. There may be variations by state, province, region and country in terms of homeless minors consenting to participation in research or difficulties with IRBs/REBs; we were not able to examine these due to limited number of respondents from each area. For instance, within the USA there are important legal variations by state governing the ability of minors to consent for different types of care (Vukadinovich 2004). Researchers working with marginalized youths in Canada have reported similar variations by province (Leadbeater et al. 2006). As these laws are often used as the basis for the ability of minors to consent for participation in health-related research, it is highly likely that there are variations by state for homeless minors being able to consent for research participation. Increased participation in research by current or former homeless youth can help ground research in the realities of the lives of these young people. An issue raised by one of our respondents who had the experience of being homeless as a young person is that participation in research can trigger difficult emotional content; researchers without this experience need to be sensitive to this possibility and build-in support structures for all members of the research team (Reeve et al. 2002, Ensign 2003, Griffiths et al. 2004). J. Ensign and S. Ammerman 370 2008 The Authors. Journal compilation 2008 Blackwell Publishing Ltd A related issue raised by another of our survey respondents is that of the burden of doing research for front-line staff and community-based agencies, whose main purpose is to provide services to homeless youths. Such agencies are often operating on a limited budget with limited staff, and adding research duties can be frustrating and untenable to them. Researchers and service providers can minimize this problem by attending to the principles and practice of communitybased participatory research (CBPR). CBPR is an approach to research with an emphasis on a collaborative approach to all aspects of the research process, including reciprocity and resource-sharing capacity (OToole et al. 2003, Israel et al. 2005). Building into the research a structure for open discussion of fair distribution of workload and resources is an important component of such community-based research. Conclusion Despite its limitations, this study extends our knowledge of some of the complexities and ethical quandaries posed by doing research with homeless youths, from the perspectives of researchers, healthcare providers and programme administrators. The results could inform future research directions that would be helpful in extending our understanding of and guidance for research with homeless youths. These include: (1) whether homeless youths (vs. impoverished but non-homeless) are more influenced by the use of money as a research incentive; (2) what effects monetary vs. non-monetary incentives have on research participation, response rates and retention for homeless youths; (3) further exploration of the reasons for apparent differences between academic disciplines in terms of research subject payment; (4) examination of possible variations by state, province, region and country in terms of difficulties with IRBs/REBs or homeless minors consenting to participation in research; and (5) appropriate ways to seek a consensus on parameters for use of different types of research incentives (and monetary amounts) for different types of research from a variety of stakeholders, including current and former homeless youths, and service providers working with them. Acknowledgements Support for the research for this paper came from the Agency for Health Care Research and Quality #HS11414-02. The views expressed in this article are the sole responsibility of the authors and are not those of the funding agency. Portions of this research were presented by both authors at the Society of Adolescent Medicine Conference, Los Angeles, CA, April 2005. Author contributions JE and SA were responsible for the study conception and design. JE and SA performed the data collection. JE and SA performed the data analysis. JE was responsible drafting of the manuscript. SA made critical revisions to the paper for important intellectual content. JE and SA provided statistical expertise. JE obtained funding. JE provided administrative, technical or material support. JE supervised the study. References Ammerman S., Ensign J. & Kirzner R. (2004) Homeless Young Adults Ages 18-24: Examining Service Delivery Adaptations. National Health Care for the Homeless Council, Nashville, TN. Balter K., Balter O., Fondell E. & Lagerros Y. 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