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Ethical Research with Hard-to-Reach Groups

The Example of Substance Misuse

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Handbook of Research Ethics and Scientific Integrity

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Abstract

Individuals engaging in substance misuse present health and allied professions with a range of complex challenges that often reflect lifestyles of chaos and high risk-taking behaviors, fueled by high levels of impulsivity. By its very nature, substance misuse is antisocial and often takes place out of sight and often as part of the “nighttime economy.” Thus, people who have substance misuse problems are difficult to reach both to understand and to help. Illicit drug taking, being both anti-social and illegal is frequently associated with other illegal activities such as dealing to others, prostitution and other acquisitive criminal behaviour. The ‘membership’ concepts of in-group vs out-group apply to their actions. This raises issues with regard to trusting others sufficiently to allow them access for research and for assistance. This chapter examines some of these issues in order to develop a deeper understanding of the needs of the group as a way to enhance understanding of such behavior and thereby facilitate positive behavioral change to achieve a reduction in potential harm and enable these individuals to achieve their fullest potential by accessing appropriate treatment and care. Using the example of substance misuse, this chapter illustrates what makes groups and/or individuals “hard to reach” both for research purposes and subsequently to offer assistance. Ethical research in such cases has to balance issues of “access” with “understanding” and “support.”

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References

  • American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders fifth edition. American Psychiatric Publishing, Washington, DC

    Google Scholar 

  • Ampt E, Hickman M (2015) Workshop synthesis: survey methods for hard-to-reach groups and modes. Transport Res Proc 11:475–480

    Article  Google Scholar 

  • Bell K, Salmon A (2011) What women who use drugs have to say about ethical research: findings of an exploratory qualitative study. J Empir Res Hum Res Ethics 6(4):84–89

    Article  Google Scholar 

  • Bell K, Salmon A (2012) Good intentions and dangerous assumptions: research ethics committee and illicit drug use research. Res Ethics 8(4):191–199

    Article  Google Scholar 

  • Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, Brozek I, Hughes C (2014) Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 14(42):1–29

    Google Scholar 

  • Borchmann R, Patterson S, Poovendran D, Wilson D, Weaver T (2014) Influences on recruitment to randomised controlled trials in mental health settings in England: a national cross-sectional survey of researchers working for the mental health research network. BMC Med Res Methodol 14(23):1–11

    Google Scholar 

  • Boschloo L, Vogelzangs N, Smit JH, Brink W, Veltman DJ, Beekman AT, Penninx BW (2011) Comorbidity and risk indicators for alcohol disorders among persons with anxiety and/or depressive disorders: findings from the Netherlands Study of Depression and Anxiety (NESDA). J Affect Disord 131(1–3):233–242. https://doi.org/10.1016/j.jad.2010.12.014

    Article  Google Scholar 

  • Carter A, Hall W (2013) Ethical implications of research on craving. Addict Behav 38(2):1593–1599

    Article  Google Scholar 

  • Crane N, Parry J, O’Toole J, D’Arcy S, Lyons M (2008) Improving blood-borne viral diagnosis; clinical audit of the uptake of dried blood spot testing offered by a substance misuse service. J Viral Hepat 16:219–222. https://doi.org/10.1111/j.1365-2893.23008.01061.x

    Article  Google Scholar 

  • Davies J A history of wales, (1990, rev. 2007). Penguin: London

    Google Scholar 

  • Driessen M, Schulte S, Luedecke C, Schafer I, Sutmann F, Durisin M, Kemper U, Koesters G, Chodzinski C, Schneider U, Broese T, Dette C, Havermann-Reinecke U (2008) Trauma and PTSD in patients with alcohol, drug or dual dependence: a multi-center study. Alcohol Clin Exp Res 32(3):481–488. https://doi.org/10.1111/j.1530-0277.2007.00591.X

    Article  Google Scholar 

  • Edwards G (2000) Alcohol: the ambiguous molecule. St Martin’s Press, New York

    Google Scholar 

  • Edwards G (2013) Alcohol – the world’s favourite drug. Penguin Books

    Google Scholar 

  • Elm JHL, Lewis JP, Walters KL, Self JM (2016) “I’m in this world for a reason”: resilience and recovery among American Indian and Alaska Native two-spirit women. J Lesbian Stud 20(3–4):352–371. https://doi.org/10.1080/10894160.2016.1152813. PMID 27254761 – via Taylor and Francis+NEJM

    Article  Google Scholar 

  • Fry CL, Ritter A, Baldwin S, Bowen KL, Gardiner P, Holt T, Jenkinson R, Johnson J (2005) Paying research participants:a study of current practices in Australia. Journal of Medical Ethics 31:542–547

    Article  Google Scholar 

  • Grant BF, Stinson FS, Dawson DA, Chou SP, Dufour M, Compton W, Pickering RP, Kaplan K (2004) Prevalence and co-occurrence of substance use disorders and independent mood and anxiety disorders: results from the National Epidemiologic Survey on Alcohol and related Conditions. Arch Gen Psychiatry 61(8):807–816

    Article  Google Scholar 

  • Kessler RC, Chiu WT, Demler O, Merikangas KR, Walters EE (2005) Prevalence, severity, and comorbidity of 12-month DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry 62(6):617–627

    Article  Google Scholar 

  • Lambert EY, Wiebel WW (eds) (1990) The collection and interpretation of data from hidden populations. United States National Institute on Drug Abuse, Washington DC. From http://www.drugabuse.gov/pdf/monographs/download98.html

    Google Scholar 

  • Lancelot A, Sims J (2001) Mental illness and substance abuse. Nurs Times 97(39):37

    Google Scholar 

  • Merkes M, Lewis V, Canaway R (2010) Supporting good practice in the provision of services to people with comorbid mental health and alcohol and other drug problems in Australia: describing key elements of good service models. BMC Health Serv Res 10:325. http://www.biomedcentral.com/1472-6963/10/325

    Article  Google Scholar 

  • Mosher HI, Moorthi G, Li J, Weeks MR (2015) A qualitative analysis of peer recruitment pressures in respondent driven sampling: are risks above the ethical limit? Int J Drug Policy 26(9):832–842

    Article  Google Scholar 

  • Pickering L (2018) Paternalism and ethics of researching with people who use drugs, Ch.27. In: Iphofen R, Tolich M (eds) The SAGE handbook of qualitative research ethics. SAGE publications Ltd, London, pp 411–426

    Chapter  Google Scholar 

  • Pulford M, Craine N, Walker AM, Hope V, Hickman M (2003) Conference paper/poster substance misuse conference Caernarfon, Gwynedd

    Google Scholar 

  • Ruglass LM, Lopez-Castro T, Cheref S, Papini S, And Hien DA (2014) At the crossroads: the intersection of substance use disorders, anxiety disorders, and posttraumatic stress. Curr Psychiatry Rep 16:505. https://doi.org/10.1007/s11920-014-0505-5

    Article  Google Scholar 

  • Sandberg S, Copes H (2013) Speaking with ethnographers: the challenges of researching drug dealers and offenders. J Drug Issues 43(2):176–197

    Article  Google Scholar 

  • Saycell K, Sims J, Hugheston-Roberts J, Hazeldine K, Lancelot A, Underwood P, Williams H (2004) A community treatment paradigm for serious and enduring mental illness in North West Wales. Ment Health Pract 8(01):20–24

    Article  Google Scholar 

  • Scott G (2008) ‘They got their program, and I got mine’: a cautionary tale concerning the ethical implications of using respondent-driven sampling to study injection drug users. Int J Drug Policy 19(1):42–51

    Article  Google Scholar 

  • Shaghaghi A, Bhopal RS, Sheikh A (2011) Approaches to recruiting ‘Hard-To-Reach’ populations into research: a review of the literature. Health Promot Perspect 1(2):86–94

    Google Scholar 

  • Sims J (2019) Mental health needs of substance misuse patients in wales. Journal of Public Mental Health

    Google Scholar 

  • Sims J, Iphofen R (2003a) Primary care assessment of hazardous and harmful drinkers: a literature review. J Subst Use 8(3):176–181

    Article  Google Scholar 

  • Sims J, Iphofen R (2003b) Parental substance misuse and its effect on children. Drug Alcohol Prof 3(3):33–40

    Article  Google Scholar 

  • Sims J, Payne K, Iphofen R (2003a) The triangular treatment paradigm in dual diagnosis clients with a mental illness. J Subst Use 8(2):112–118. https://doi.org/10.1080/1465989031000109815

    Article  Google Scholar 

  • Sims J, Iphofen R, Evans A (2003b) Rapid access treatment model for community-based opiate detoxifcation. The British Library: Special Acquisitions Unit, PO Box 32, Boston Spa, Wetherby, LS23 6UZ Catalogue Number MO3/37596

    Google Scholar 

  • Sims J, Kristian MR, Pritchard K, Jones L (2007) Paired intervention model for identified alcohol misuse in secondary care. Pract Dev Health Care 6(4):221–231

    Article  Google Scholar 

  • Sims J, Kristian MR, Pritchard K, Jones L (2008) Practice development in substance misuse services: changing the patient experience of services. Pract Dev Health Care 7(1):4–14

    Article  Google Scholar 

  • Stewart SH, Conrod P (2008) Chapter 13: Anxiety disorder and substance use disorder co-morbidity: common themes and future directions. In: Stewart SH, Conrod PJ (eds) Anxiety and substance use disorders. https://doi.org/10.1007/978-0-387-74290-8_13

  • Svab A, Kuhar R (2006) Researching hard-to-reach social groups: the example of gay and lesbian population in Slovenia. Faculty of Social Sciences, The peace Institute, Ljubljana. UDK: 316.344.7-055.3(497.4)“202/2006” Izvorni znansteveni rad Primljeno:1.9.2006

    Google Scholar 

  • Sydor A (2013) Conducting research into hard-to-reach populations. Nurse Res 20(3):33–37

    Article  Google Scholar 

  • The Royal College of Physicians (1987) The medical consequences of alcohol abuse – a great and growing evil. Tavistock Publications: New York

    Google Scholar 

  • Weaver T, Charles V, Madden P, Renton A (2005) Co-morbidity of substance misuse and mental illness collaborative study (COSMIC). The study of the prevalence and management of co-morbidity amongst adult substance misuse & mental health treatment populations. Department of Health – Drug Misuse Research Initiative

    Google Scholar 

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Authors and Affiliations

  1. Substance Misuse Service, Betsi Cadwaladr University Health Board, Caernarfon, Wales, UK

    John Sims

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  1. John Sims
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Correspondence to John Sims .

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Editors and Affiliations

  1. Chatelaillon Plage, France

    Ron Iphofen

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Sims, J. (2019). Ethical Research with Hard-to-Reach Groups. In: Iphofen, R. (eds) Handbook of Research Ethics and Scientific Integrity. Springer, Cham. https://doi.org/10.1007/978-3-319-76040-7_32-1

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  • DOI: https://doi.org/10.1007/978-3-319-76040-7_32-1

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-76040-7

  • Online ISBN: 978-3-319-76040-7

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