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Research Articles

Experiences of participation in a longitudinal cohort study of people who inject drugs in Victoria, Australia

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon show all
Pages 229-238 | Received 02 Sep 2022, Accepted 01 Feb 2023, Published online: 24 Feb 2023

References

  • Abadie, R., Goldenberg, S., Welch-Lazoritz, M., & Fisher, C. B. (2018). Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research. PLoS One. 13(12), e0208410.
  • Abadie, R., Brown, B., & Fisher, C. B. (2019). “Money Helps”: People who inject drugs and their perceptions of financial compensation and its ethical implications. Ethics & Behavior, 29(8), 607–620.
  • Abdelsalam, S., Van Den Boom, W., Higgs, P., Dietze, P., & Erbas, B. (2021). The association between depression and oral health related quality of life in people who inject drugs. Drug and Alcohol Dependence, 229(Part B), 109121.
  • Austin, T., & Boyd, J. (2021). Having a voice and saving lives: A qualitative survey on employment impacts of people with lived experience of drug use working in harm reduction. Harm Reduction Journal, 18(1), 1–12.
  • Barratt, M. J., Norman, J. S., & Fry, C. L. (2007). Positive and negative aspects of participation in illicit drug research: Implications for recruitment and ethical conduct. International Journal of Drug Policy, 18(3), 235–238. https://doi.org/10.1016/j.drugpo.2006.07.001
  • Birch, M., & Miller, T. (2000). Inviting intimacy: The interview as therapeutic opportunity. International Journal of Social Research Methodology, 3(3), 189–202. https://doi.org/10.1080/13645570050083689
  • Bishop, P. A., & Herron, R. L. (2015). Use and misuse of the likert item responses and other ordinal measures. International Journal of Exercise Science, 8(3), 297–302.
  • Boateng, G. O., Neilands, T. B., Frongillo, E. A., Melgar-Quiñonez, H. R., & Young, S. L. (2018). Best practices for developing and validating scales for health, social, and behavioral research: A primer. Frontiers in Public Health, 6, 149–149. https://doi.org/10.3389/fpubh.2018.00149
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
  • Chapman, J., Roche, A. M., Kostadinov, V., Duraisingam, V., & Hodge, S. (2020). Lived experience: Characteristics of workers in alcohol and other drug nongovernment organizations. Contemporary Drug Problems, 47(1), 63–77. https://doi.org/10.1177/0091450919894341
  • Choi, B. C., & Pak, A. W. (2005). A catalogue of biases in questionnaires. Preventing Chronic Disease, 2(1), A13–A13.
  • Collins, A. B., Strike, C., Guta, A., Turje, R. B., McDougall, P., Parashar, S., & McNeil, R. (2017). “We’re giving you something so we get something in return”: Perspectives on research participation and compensation among people living with HIV who use drugs. International Journal of Drug Policy, 39, 92–98.
  • Crofts, N. (1998). Conduct of cohort studies among marginalised populations: The experience of the Victorian Injecting Drug Users Cohort Study (VICS). Australasian Epidemiologist, 5(4), 8–11.
  • DeBeck, K., Cheng, T., Montaner, J. S., Beyrer, C., Elliott, R., Sherman, S., Wood, E., &Baral, S. (2017). HIV and the criminalisation of drug use among people who inject drugs: A systematic review. The Lancet HIV, 4(8), e357–e374.
  • Dickson-Swift, V., James, E. L., Kippen, S., & Liamputtong, P. (2006). Blurring boundaries in qualitative health research on sensitive topics. Qualitative Health Research, 16(6), 853–871. https://doi.org/10.1177/1049732306287526
  • Drainoni, M. L., Childs, E., Biello, K. B., Biancarelli, D. L., Edeza, A., Salhaney, P., Mimiaga, M. J., & Bazzi, A. R. (2019). “We don’t get much of a voice about anything”: Perspectives on photovoice among people who inject drugs. Harm Reduction Journal, 16(1), 1–8.
  • Eddie, D., Hoffman, L., Vilsaint, C., Abry, A., Bergman, B., Hoeppner, B., Weinstein, C., & Kelly, J. F. (2019). Lived experience in new models of care for substance use disorder: A systematic review of peer recovery support services and recovery coaching. Frontiers in Psychology, 10, 1052. https://doi.org/10.3389/fpsyg.2019.01052
  • Elmir, R., Schmied, V., Jackson, D., & Wilkes, L. (2011). Interviewing people about potentially sensitive topics. Nurse Researcher, 19(1), 12–16.
  • Festinger, D. S., Marlowe, D. B., Croft, J. R., Dugosh, K. L., Mastro, N. K., Lee, P. A., DeMatteo, D. S., & Patapis, N. S. (2005). Do research payments precipitate drug use or coerce participation? Drug and Alcohol Dependence, 78(3), 275–281.
  • Festinger, D. S., Marlowe, D. B., Dugosh, K. L., Croft, J. R., & Arabia, P. L. (2008). Higher magnitude cash payments improve research follow-up rates without increasing drug use or perceived coercion. Drug and Alcohol Dependence, 96, 128–135.
  • Fry, C., & Dwyer, R. (2001). For love or money? An exploratory study of why injecting drug users participate in research. Addiction, 96(9), 1319–1325. https://doi.org/10.1046/j.1360-0443.2001.969131911.x
  • Fry, C. L., Hall, W., Ritter, A., & Jenkinson, R. (2006). The ethics of paying drug users who participate in research: A review and practical recommendations. Journal of Empirical Research on Human Research Ethics, 1(4), 21–36. https://doi.org/10.1525/jer.2006.1.4.21
  • Higgs, P., Maher, L., Jordens, J., Dunlop, A., & Sargent, P. (2001). Harm reduction and drug users of Vietnamese ethnicity. Drug and Alcohol Review, 20(2), 239–245. https://doi.org/10.1080/09595230124201
  • Higgs, P., Moore, D., & Aitken, C. (2006). Engagement, reciprocity and advocacy: Ethical harm reduction practice in research with injecting drug users. Drug and Alcohol Review, 25(5), 419–423. https://doi.org/10.1080/09595230600876606
  • Hill, P. L., Stoové, M., Agius, P. A., Maher, L., Hickman, M., Crawford, S., & Dietze, P. (2022). Mortality in the SuperMIX cohort of people who inject drugs in Melbourne, Australia: A prospective observational study. Addiction, 117(12), 3091–3098. https://doi.org/10.1111/add.15975
  • Ibáñez-Carrasco, F., Watson, J. R., & Tavares, J. (2019). Supporting peer researchers: Recommendations from our lived experience/expertise in community-based research in Canada. Harm Reduction Journal, 16(1), 1–5. https://doi.org/10.1186/s12954-019-0322-6
  • Jaffe, K., Nosova, E., DeBeck, K., Hayashi, K., Milloy, M. J., & Richardson, L. (2021). Trust in research physicians as a key dimension of randomized controlled trial participation in clinical addictions research. Substance Abuse, 42(4), 927–934. https://doi.org/10.1080/08897077.2021.1900987
  • Kost, R. G., Lee, L. M., Yessis, J., Coller, B. S., & Henderson, D. K. (2011). Assessing research participants’ perceptions of their clinical research experiences. Clinical and Translational Science, 4(6), 403–413. https://doi.org/10.1111/j.1752-8062.2011.00349.x
  • Kral, A. H., Wenger, L., Novak, S. P., Chu, D., Corsi, K. F., Coffa, D., Shapiro, B., & Bluthenthal, R. N. (2015). Is cannabis use associated with less opioid use among people who inject drugs? Drug and Alcohol Dependence, 153, 236–241. https://doi.org/10.1016/j.drugalcdep.2015.05.014
  • Marshall, A. D., Conway, A., Cunningham, E. B., Valerio, H., Silk, D., Alavi, M., Wade, A., Lam, T., Zohrab, K., Dunlop, A., Connelly, C., Christmass, M., Cock, V., Burns, C., Henderson, C., Wiseman, V., Dore, G. J., & Grebely, J. (2022). Willingness of people who inject drugs to participate in a randomised controlled trial involving financial incentives to initiate hepatitis C treatment. Drug and Alcohol Dependence, 235, 109438. https://doi.org/10.1016/j.drugalcdep.2022.109438
  • McGarry, J. (2010). Exploring the effect of conducting sensitive research. Nurse Researcher, 18(1), 8–14. https://doi.org/10.7748/nr2010.10.18.1.8.c8043
  • McGrath, P. (2003). Benefits of participation in longitudinal qualitative research study. Monash Bioethical Review, 22(1), 63–78. https://doi.org/10.1007/bf03351388
  • Maher, L., White, B., Donald, A., Bates, A., Enriquez, J., Pham, S., & Liao, L. (2010). Using ethnographic fieldwork to inform hepatitis C vaccine preparedness studies with people who inject drugs. International Journal of Drug Policy, 21(3), 194–201. https://doi.org/10.1016/j.drugpo.2009.04.004
  • Minkler, M., Fadem, P., Perry, M., Blum, K., Moore, L., & Rogers, J. (2002). Ethical dilemmas in participatory action research. Health Education & Behavior, 29(1), 14–29. https://doi.org/10.1177/109019810202900104
  • Mirzazadeh, A., Hosseini-Hooshyar, S., Shahesmaeili, A., Bahramnejad, A., Barshan, A., Mousavian, G., Najafi, E., Sharifi, H., Haghdoost, A.-A., Briceno, A., McFarland, W., & Page, K. (2020). Barriers and motivators to participation and retention in HIV/HCV cohort studies among people who inject drugs: A community consultation in Iran. Substance Abuse Treatment, Prevention, and Policy, 15(1), 56. https://doi.org/10.1186/s13011-020-00298-y
  • National Health and Medical Research Council (NHRMC). (2019). Payment of participants in research: Information for researchers, HRECs and other ethics review bodies. Commonwealth of Australia. https://www.nhmrc.gov.au/about-us/publications/payment-participants-researchinformation-researchers-hrecs-and-other-ethics-review-bodies
  • Olding, M., Boyd, J., Kerr, T., & McNeil, R. (2021). “And we just have to keep going”: Task shifting and the production of burnout among overdose response workers with lived experience. Social Science & Medicine, 270, 113631. https://doi.org/10.1016/j.socscimed.2020.113631
  • Parkin, S. (2017). Observant participation with people who inject drugs in street-based settings: Reflections on a method used during applied ethnographic research. Addiction Research & Theory, 25(1), 39–47. https://doi.org/10.1080/16066359.2016.1196675
  • Pinto, A., Rodriguez, A., & Smith, J. (2022). Researching sensitive topics in healthcare. Evidence-Based Nursing, 25(2), 41–43. https://doi.org/10.1136/ebnurs-2021-103501
  • QSR International Pty Ltd. (2018). NVivo (Version 12), https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home
  • Rafful, C., Orozco, R., Rangel, G., Davidson, P., Werb, D., Beletsky, L., & Strathdee, S. A. (2018). Increased non‐fatal overdose risk associated with involuntary drug treatment in a longitudinal study with people who inject drugs. Addiction, 113(6), 1056–1063. https://doi.org/10.1111/add.14159
  • Riley, E. D., Evans, J. L., Hahn, J. A., Briceno, A., Davidson, P. J., Lum, P. J., & Page, K. (2016). A longitudinal study of multiple drug use and overdose among young people who inject drugs. American Journal of Public Health, 106(5), 915–917. https://doi.org/10.2105/AJPH.2016.303084
  • Ritter, A. (2022). Drawing the lines between researcher and advocate? Integration and implementation insights. https://i2insights.org/2022/03/22/researcher-and-advocate/Drawing lines between researcher and advocate?
  • Salazar, Z. R., Vincent, L., Figgatt, M. C., Gilbert, M. K., & Dasgupta, N. (2021). Research led by people who use drugs: Centering the expertise of lived experience. Substance Abuse Treatment, Prevention, and Policy, 16(1), 1–4. https://doi.org/10.1186/s13011-021-00406-6
  • Scott, N., Carrotte, E. R., Higgs, P., Stoové, M. A., Aitken, C. K., & Dietze, P. M. (2017). Longitudinal changes in personal wellbeing in a cohort of people who inject drugs. PLoS One, 12(5), e0178474. https://doi.org/10.1371/journal.pone.0178474
  • Smith, K. E., & Stewart, E. A. (2017). Academic advocacy in public health: Disciplinary ‘duty’ or political ‘propaganda’? Social Science & Medicine, 189, 35–43. https://doi.org/10.1016/j.socscimed.2017.07.014
  • Sunderland, N., Catalano, T., Kendall, E., McAuliffe, D., & Chenoweth, L. (2011). Exploring the concept of moral distress with community-based researchers: An Australian study. Journal of Social Service Research, 37(1), 73–85. https://doi.org/10.1080/01488376.2011.524526
  • Topp, L., Islam, M. M., & Day, C. A. (2013). Relative efficacy of cash versus vouchers in engaging opioid substitution treatment clients in survey-based research. Journal of Medical Ethics, 39(4), 253–256. https://doi.org/10.1136/medethics-2012-100884
  • Tourangeau, R., & Yan, T. (2007). Sensitive questions in surveys. Psychological Bulletin, 133(5), 859–883. https://doi.org/10.1037/0033-2909.133.5.859
  • Van Den Boom, W., Quiroga, M., Fetene, D., Agius, P., Higgs, P., Maher, L., Hickman, M., Stoové, M., & Dietze, P. (2021). The Melbourne Medically Supervised Injecting Room attracted vulnerable and high-risk people during its first 18 months of operation: Findings from a prospective cohort study. American Journal of Preventive Medicine, 61(2), 217–224. https://doi.org/10.1016/j.amepre.2021.02.018
  • Van Den Boom, W., del Mar Quiroga, M., O’Keefe, D., Kumar, D., Hill, P., Scott, N., Agius, P., Higgs, P., Kerr, T., Maher, L., Hickman, M., Stoové, M., & Dietze, P. (2022). Cohort profile: The Melbourne injecting Drug User Cohort Study (SuperMIX). International Journal of Epidemiology, 51(3), e130–e123. https://doi.org/10.1093/ije/dyab231
  • Wolgemuth, J. R., Erdil-Moody, Z., Opsal, T., Cross, J. E., Kaanta, T., Dickmann, E. M., & Colomer, S. (2015). Participants’ experiences of the qualitative interview: Considering the importance of research paradigms. Qualitative Research, 15(3), 351–372. https://doi.org/10.1177/1468794114524222