“I want to feel young again”: experiences and perspectives of young people who inject drugs living with hepatitis C in Vancouver, Canada

Abstract

Objectives

People who inject drugs (PWID) are disproportionately impacted by hepatitis C virus (HCV). Despite the availability and efficacy of direct-acting antiviral (DAA) HCV therapies, treatment rates remain low among PWID. Among PWID, those who are young (under age 30) experience high rates of HCV and also face distinct barriers to care. The objective of this study is to identify facilitators and barriers to navigating various facets of the HCV cascade of care, including DAA treatment access, among young PWID.

Methods

We draw on data from in-depth, semi-structured interviews conducted between May and November 2019 with a sample of 11 young, street-involved PWID who have lived experience of HCV and who live in Metro Vancouver, Canada. Informed by a social constructivist epistemology, data were thematically analyzed using an equity-oriented theoretical framework.

Results

Our analysis yielded two key themes. First, participants described facilitators to HCV care access, including individual factors (e.g., desire to be cured, knowledge of side effects) and healthcare and socio-contextual factors (e.g., peer supports, supportive youth-specific services). Second, participants described a contrasting set of barriers to HCV care access, including concerns over treatment side effects and (in)eligibility, complex healthcare system navigation, substance use- and housing-related stigma, and clinician gatekeeping of DAAs.

Conclusion

Findings from this study underscore the need for HCV-related knowledge-building efforts among young PWID and clinicians. Also needed are structural policy interventions to facilitate access to DAAs, including anti-stigma efforts, access to safe housing, and the scale-up of low-barrier youth-specific services and decentralized HCV care.

Résumé

Objectifs

Les personnes qui font usage de drogues par injection (PUDI) sont démesurément touchées par le virus de l’hépatite C (VHC). Malgré la disponibilité et l’efficacité potentielle des traitements antiviraux à action directe (AAD) contre le VHC, les taux de traitement demeurent faibles chez les PUDI. Les jeunes PUDI (moins de 30 ans) présentent des taux élevés de VHC tout en faisant face à des obstacles distincts pour se faire soigner. Notre étude vise à cerner les éléments qui favorisent ou qui entravent la négociation des divers aspects de la cascade des soins du VHC, dont l’accès aux traitements par AAD, chez les jeunes PUDI.

Méthode

Nos données proviennent d’entretiens semi-directifs approfondis menés entre mai et novembre 2019 auprès d’un échantillon de 11 jeunes PUDI de la rue ayant une expérience vécue du VHC et vivant dans le District régional du Grand Vancouver, au Canada. Éclairées par une épistémologie constructiviste sociale, les données ont été analysées thématiquement à l’aide d’un cadre théorique orienté sur l’équité.

Résultats

Deux grands thèmes se sont dégagés de notre analyse. Premièrement, les participants ont décrit les éléments qui favorisent l’accès aux soins du VHC, dont les facteurs individuels (p. ex. le désir de guérir, la connaissance des effets secondaires) et les facteurs socio-contextuels et liés aux soins de santé (p. ex. l’entraide des pairs, les services de soutien pour les jeunes). Deuxièmement, les participants ont décrit un ensemble opposé d’obstacles à l’accès aux soins du VHC, dont les craintes par rapport aux effets secondaires des traitements et à l’(in)admissibilité aux traitements, le parcours complexe du système de soins de santé, la stigmatisation associée à l’usage de substances et au logement, ainsi que la protection de l’accès aux AAD par les cliniciens.

Conclusion

Les constatations de l’étude confirment la nécessité de renforcer les connaissances sur le VHC, tant chez les jeunes PUDI que chez les cliniciens. Sont aussi nécessaires des interventions stratégiques structurelles pour faciliter l’accès aux AAD, dont la lutte contre la stigmatisation, la sécurité du logement, l’augmentation des services jeunesse « à bas seuil » et la décentralisation des soins du VHC.

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Data availability

All data required to make the conclusions reached in this manuscript are included here.

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Acknowledgements

We are thankful to the people who generously shared their time and stories for this research.

Code availability

Not applicable.

Funding

This study was funded by the Canadian Institutes of Health Research (Grant PJT-148922). Rod Knight and Lianping Ti are supported by Scholar Awards from the Michael Smith Foundation for Health Research. Trevor Goodyear receives trainee support through the Canadian Nurses Foundation and the US National Institute of Drug Abuse (Grant R25-DA033756).

Author information

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Authors

Contributions

Jessica Jacob led the analysis of data and conceptualized, wrote, and revised the manuscript. Rod Knight conceptualized the study, obtained study funding, contributed to data collection and analysis, and provided mentorship in writing this manuscript. Peter Hoong led data collection and contributed to data analysis and manuscript revision. Trevor Goodyear, Pierre-julien Coulaud, and Lianping Ti contributed to data analysis and offered critical revisions to the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Rod Knight.

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Ethics approval

All procedures performed involving human participants were conducted in accordance with the ethical standards of the institutional research ethics board at the University of British Columbia (H16-02943) and with the 1964 Helsinki declaration and its later amendments.

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Informed consent was obtained from all individual participants included in the study.

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Participants signed informed consent regarding publishing de-identified excerpts from the interview data.

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The authors declare no competing interests.

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Jacob, J., Goodyear, T., Coulaud, Pj. et al. “I want to feel young again”: experiences and perspectives of young people who inject drugs living with hepatitis C in Vancouver, Canada. Can J Public Health (2021). https://doi.org/10.17269/s41997-021-00535-2

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Keywords

  • Hepatitis C
  • Direct-acting antivirals
  • Treatment
  • Youth
  • People who inject drugs
  • Qualitative research

Mots-clés

  • Hépatite C
  • antiviraux à action directe
  • traitement
  • jeunes
  • personnes qui font usage de drogues par injection
  • recherche qualitative