Advertisement

Ethics and Practice of Research with People Who Use Drugs

  • Julaine AllanEmail author
Reference work entry

Abstract

Global harm-reduction strategies aim to prevent or reduce the severity of problems associated with nonmedical use of dependence-causing drugs including alcohol. However, harm reduction strategies have to fit the personal, social, and environmental context of people using drugs to be effective. The best way to develop strategies that fit is to research and understand drug use practices including how, why, and when drugs are used. This chapter discusses a number of ethical and practical factors to consider when planning and conducting research with people who use drugs. Data collection challenges include recruitment of a marginalized and hidden population, gaining consent, ensuring anonymity and responding to harm and distress. Examples are drawn from the author’s research on alcohol and other drug use in rural Australian settings including farming and fishing workplaces, on illicit fentanyl use, and with people in treatment.

Keywords

Drug use Data collection Ethics Intoxication Harm reduction Cognitive impairment 

References

  1. Aldridge J, Charles V. Researching the intoxicated: informed consent implications for alcohol and drug research. Drug Alcohol Depend. 2008;93(3):191–6.CrossRefGoogle Scholar
  2. Allan J, Campbell M. Improving access to hard-to-reach services: a soft entry approach to drug and alcohol services for rural Australian aboriginal communities. Soc Work Health Care. 2011;50(6):443–65.CrossRefGoogle Scholar
  3. Allan J, Kemp M. Aboriginal and non aboriginal women in new South Wales non government organisation (NGO) drug and alcohol treatment and the implications for social work: who starts, who finishes, and where do they come from? Aust Soc Work. 2011;64(1):68–83.CrossRefGoogle Scholar
  4. Allan J, Kemp M. The prevalence and characteristics of homelessness in the NSW substance treatment population: implications for practice. Soc Work Health Care. 2014;53(2):183–98.CrossRefGoogle Scholar
  5. Allan J, Ball P, Alston M. What is health anyway? Perceptions and experiences of health and health care from socio-economically disadvantaged rural residents. Rural Soc. 2010;20(1):85–97.CrossRefGoogle Scholar
  6. Allan J, Clifford A, Ball P, Alston M, Meister P. ‘You’re less complete if you haven’t got a can in your hand’: alcohol consumption and related harmful effects in rural Australia: the role and influence of cultural capital. Alcohol Alcohol. 2012a;47(5):624–9.CrossRefGoogle Scholar
  7. Allan J, Kemp M, Golden A. The prevalence of cognitive impairment in a rural in-patient substance misuse treatment programme. Ment Health Subst Use. 2012b;5(4):303–13.CrossRefGoogle Scholar
  8. Allan J, Meister P, Clifford A, Whittenbury K. Drug and alcohol use by farming and fishing workers. Canberra: Rural Industries Research and Development Corporation; 2012c. Retrieved 25 Apr 2017 from https://rirdc.infoservices.com.au/items/12-061.Google Scholar
  9. Allan J, Herridge N, Griffiths P, Fisher A, Clarke I, et al. Illicit fentanyl use in rural Australia – an exploratory study. J Alcohol Drug Depend. 2015;3:196.  https://doi.org/10.4172/2329-6488.1000196.CrossRefGoogle Scholar
  10. Arias SA, Dumas O, Sullivan AF, Boudreaux ED, Miller I, Camargo CA Jr. Substance use as a mediator of the association between demographics, suicide attempt history, and future suicide attempts in emergency department patients. Crisis. 2016;37(5):385–91.CrossRefGoogle Scholar
  11. Ball AL. HIV, injecting drug use and harm reduction: a public health response. Addiction. 2007;102(5):684–90.CrossRefGoogle Scholar
  12. Baltes BB, Parker CP. Reducing the effects of performance expectations on behavioral ratings. Organ Behav Hum Decis Process. 2000;82(2):237–67.CrossRefGoogle Scholar
  13. Banks S. Everyday ethics in professional life: social work as ethics work. Ethics Soc Welf. 2016;10(1):35–52.CrossRefGoogle Scholar
  14. Barratt MJ, Norman JS, Fry CL. Positive and negative aspects of participation in illicit drug research: implications for recruitment and ethical conduct. Int J Drug Policy. 2007;18(3):235–8.CrossRefGoogle Scholar
  15. Bradford S, Rickwood D. Acceptability and utility of an electronic psychosocial assessment (myAssessment) to increase self-disclosure in youth mental healthcare: a quasi-experimental study. BMC Psychiatry. 2015;15:305.  https://doi.org/10.1186/s12888-015-0694-4.CrossRefGoogle Scholar
  16. Bradford S, Rickwood D, Boer D. Health professionals attitudes towards electronic psychosocial assessments in youth mental healthcare. Health. 2014;6:1822–33. Published Online July 2014 in SciRes. http://www.scirp.org/journal/health,  https://doi.org/10.4236/health.2014.61421.CrossRefGoogle Scholar
  17. Brorson H, AJo Arnevik E, Rand-Hendriksen K, Duckert F. Drop-out from addiction treatment: a systematic review of risk factors. Clin Psychol Rev. 2013;33(8):1010–24.CrossRefGoogle Scholar
  18. Butler L, Burns L, Breen C. Social media as a recruitment tool for drug use surveys. 2017. Retrieved on 25 Apr 2017 from National Drug and Alcohol Research Centre, UNSW Australia https://ndarc.med.unsw.edu.au/sites/default/files/ndarc/resources/EDRSapril2017_FINAL.PDF.
  19. Ciccarone D, Harris M. Fire in the vein: heroin acidity and its proximal effect on users’ health. Int J Drug Policy. 2015;26(11):1103–10.CrossRefGoogle Scholar
  20. Collings S, Dew A, Dowse L, Cooney E. Evaluation of project RE-PIN. Receive, encode, process and INtegrate drug and alcohol treatment strategies for people with cognitive impairment: final report. 2017. Retrieved on 25 Apr 2017 from www.lyndon.org.au/research/.
  21. Currier D, Spittal MJ, Patton G, Pirkis J. Life stress and suicidal ideation in Australian men – cross-sectional analysis of the Australian longitudinal study on male health baseline data. BMC Public Health. 2016;16(Suppl 3):1031.  https://doi.org/10.1186/s12889-016-3702-9.CrossRefGoogle Scholar
  22. Donroe JH, Tetrault JM. Recognizing and caring for the intoxicated patient in an outpatient clinic. Med Clin N Am. 2017;101(3):573–86.CrossRefGoogle Scholar
  23. Dugosh KL, Festinger D, Cacciola JS. Examining perceived coercion among incarcerated substance abusers participating in research. Drug Alcohol Depend. 2014;140:e52.  https://doi.org/10.1016/j.drugalcdep.2014.02.161.CrossRefGoogle Scholar
  24. Festinger DS, Marlowe DB, Dugosh KL, Croft JR, Arabia PL. Higher magnitude cash payments improve research follow-up rates without increasing drug use or perceived coercion. Drug Alcohol Depend. 2008;96(1–2):128–35.CrossRefGoogle Scholar
  25. Fragar L, Depczynski J, Lower T. Mortality patterns of Australian male farmers and farm managers. Aust J Rural Health. 2011;19(4):179–84.CrossRefGoogle Scholar
  26. Gile KJ, Johnston LG, Salganik MJ. Diagnostics for respondent-driven sampling. J R Stat Soc Ser A. 2015;178(1):241–69.CrossRefGoogle Scholar
  27. Gyarmathy VA, Johnston LG, Caplinskiene I, Caplinskas S, Latkin CA. A simulative comparison of respondent driven sampling with incentivized snowball sampling-the “strudel effect”. Drug Alcohol Depend. 2014;135:71–7.CrossRefGoogle Scholar
  28. Hall MN, Amodeo M, Shaffer HJ, Vander Bilt J. Social workers employed in substance abuse treatment agencies: a training needs assessment. Soc Work. 2000;45(2):141–55.CrossRefGoogle Scholar
  29. Hempstead K, Yildirim EO. Supply-side response to declining heroin purity: fentanyl overdose episode in New Jersey. Health Econ. 2014;23(6):688–705.CrossRefGoogle Scholar
  30. Holbrook MB. Using a structural model of halo effect to assess perceptual distortion due to affective overtones. J Consum Res. 1983;10(2):247–52.CrossRefGoogle Scholar
  31. Horyniak D, Higgs P, Jenkinson R, Degenhardt L, Stoove M, Kerr T, Dietze P. Establishing the Melbourne injecting drug user cohort study (MIX): rationale, methods, and baseline and twelve-month follow-up results. Harm Reduct J. 2013;10:11.  https://doi.org/10.1186/1477-7517-10-11. http://www.harmreductionjournal.com/content/10/1/1.CrossRefGoogle Scholar
  32. Hser Y, Evans E, Huang D, Anglin DM. Relationship between drug treatment services, retention, and outcomes. Psychiatr Serv. 2004;55(7):767–74.CrossRefGoogle Scholar
  33. Humeniuk R. Validation of the alcohol, smoking and substance involvement screening test (ASSIST) and pilot brief intervention: A technical report of phase II findings of the WHO ASSIST Project. 2010. Retrieved May 29, 2015 from http://www.who.int/substance_abuse/activities/assist_technicalreport_phase2_final.pdf.
  34. Kerger BD, Bernal A, Paustenbach DJ, Huntley-Fenner G. Halo and spillover effect illustrations for selected beneficial medical devices and drugs. BMC Public Health. 2016;16:979.  https://doi.org/10.1186/s12889-016-3595-7.CrossRefGoogle Scholar
  35. Liamputtong P. Researching the Vulnerable: A Guide to Sensitive Research Methods. Sage Publications, London; 2007.Google Scholar
  36. Lim R. Drug use and other risky behaviours in young people attending a music festival. In: Paper presented 15, October, 2013 at the national drug trends conference, Melbourne. 2013. https://ndarc.med.unsw.edu.au/event/2013-national-drug-trends-conference.
  37. Lee FSL, Vogel D, Limayem M. Virtual Community Informatics: A Review and Research Agenda, Journal of Information Technology Theory and Application (JITTA). 2003; 5:1, Article 5. Retrieved on 23 April, 2017 from http://aisel.aisnet.org/jitta/vol5/iss1/5.
  38. Lofton A, Phillip W. Encyclopedia of Toxicology 2005. New York: Elsevier.CrossRefGoogle Scholar
  39. Lotan G, Ells C. Adults with intellectual and developmental disabilities and participation in decision kaking: ethical considerations for professional–client practice. Intellect Dev Disabil. 2010;48(2):112–25.CrossRefGoogle Scholar
  40. McDonald KE, Keys CB. How the powerful decide: access to research participation by those at the margins. Am J Community Psychol. 2008;42(1–2):79–93.CrossRefGoogle Scholar
  41. McDonald KE, Raymaker DM. Paradigm shifts in disability and health: toward more ethical public health research. Am J Public Health. 2013;103(12):2165–73.CrossRefGoogle Scholar
  42. Middleton J, McGrail S, Stringer K. Drug related deaths in England and Wales. BMJ. 2016;355:i5259.  https://doi.org/10.1136/bmj.i5259. (Published 17 October 2016).CrossRefGoogle Scholar
  43. NAOMI Patients Association and Boyd. NAOMI research survivors: experiences and recommendations. North American opiate medication initiative. Vancouver: British Columbia. 2012. Retrieved on 2 Nov 2015 from http://drugpolicy.ca/wp-content/uploads/2012/03/NPAreportMarch5-12.pdf.
  44. Neufeld E, Hirdes JP, Perlman CM, Rabinowitz T. A longitudinal examination of rural status and suicide risk. Healthc Manage Forum. 2015;28(4):129–33.CrossRefGoogle Scholar
  45. Olde Rikkert MG, Verweij MF, Hoefnagels WH. Informed consent and mental competence of the elderly in medical-scientific studies. Tijdschr Gerontol Geriatr 1995;26(4):152–62Google Scholar
  46. Roxburgh A, Burns L, Drummer OH, Pilgrim J, Farrell M, Degenhardt L. Trends in fentanyl prescriptions and fentanyl-related mortality in Australia. Drug Alcohol Rev. 2013;32(3): 269–75.CrossRefGoogle Scholar
  47. Ruefli T, Rogers SJ. How do drug users define their progress in harm reduction programs? Qualitative research to develop user-generated outcomes. Harm Reduct J. 2004;1(1):8.  https://doi.org/10.1186/1477-7517-1-8.CrossRefGoogle Scholar
  48. Sacks A, Fenske C, Gordon W, Hibbard M, Perez K, Braundau S. Co-morbidity of substance abuse and traumatic brain injury. J Dual Diagn. 2009;5(304):404–17.CrossRefGoogle Scholar
  49. Saunders JB, Aasland OG, Babor TF, De La Fuente JR, Grant M. Development of the Alcohol Use Disorders Identification Test (AUDIT): WHO collaborative project on early detection of persons with harmful alcohol consumption-II. Addiction 1993;88(6):791–804.CrossRefGoogle Scholar
  50. van Boekel LC, Brouwers E, van Weeghel J, Garretsen H. Stigma among health professionals towards patients with substance use disorders and its consequences for healthcare delivery: systematic review. Drug Alcohol Depend. 2013;131:23–35.CrossRefGoogle Scholar
  51. Welie SP, Berghmans RL. Inclusion of patients with severe mental illness in clinical trials: issues and recommendations surrounding informed consent. CNS Drugs. 2006;20(1):67–83.CrossRefGoogle Scholar
  52. Wohl AR, Ludwig-Barron N, Dierst-Davies R, Kulkarni S, Bendetson J, Jordan W, Perez MJ. Project engage: snowball sampling and direct recruitment to identify and link hard-to-reach HIV-infected persons who are out of care. J Acquir Immune Defic Syndr. 2017;75(2):190–7.CrossRefGoogle Scholar
  53. Woltmann EM, Whitley R. Shared decision making in public mental health care: Perspectives from consumers living with severe mental illness. Psychiatric Rehabilitation Journal. 2010;34(1):29–36.CrossRefGoogle Scholar
  54. World Health Organisation [WHO]. WHO Expert Committee on Drug Dependence. Twentieth report. World Health Organ Technical Report Series; 1974. p.1–89.Google Scholar
  55. World Health Organisation [WHO]. WHO expert committee on drug dependence. 2016. Retrieved on 25 Apr 2017 from http://www.who.int/medicines/access/controlled-substances/ECDD_38th_Report_Unedited_version_13032017.pdf?ua=1.
  56. Zhang Z, Gerstein DR, Friedmann PD. Patient satisfaction and sustained outcomes of drug abuse treatment. J Health Psychol. 2008;13(3):388–400.CrossRefGoogle Scholar

Copyright information

© Springer Nature Singapore Pte Ltd. 2019

Authors and Affiliations

  1. 1.LyndonOrangeAustralia

Personalised recommendations