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Mambro A, Mortazhejri S, Ortiz-Paredes D, Patey A, Fontaine G, Dussault C, Cox J, Grimshaw JM, Presseau J, Kronfli N. Understanding Perceptions of Hepatitis C and Its Management Among People with Experience of Incarceration in Quebec, Canada: A Qualitative Study Guided by the Common Sense Self-Regulation Model. Viruses 2024; 16:1910. [PMID: 39772217 PMCID: PMC11680397 DOI: 10.3390/v16121910] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/21/2024] [Revised: 12/03/2024] [Accepted: 12/09/2024] [Indexed: 01/11/2025] Open
Abstract
Hepatitis C virus (HCV) disproportionately affects certain sub-populations, including people with experience of incarceration (PWEI). Little is known about how perceptions of HCV and treatment have changed despite simplifications in testing and treatment in carceral settings. Nineteen semi-structured interviews were conducted with people living with or having a history of HCV infection released from Quebec provincial prison. Interviews were guided by the Common Sense Self-Regulation Model (CS-SRM) and aimed to explore cognitive and emotional representations of HCV and coping strategies. Among the 19 participants, seven (37%) were diagnosed with HCV in prison and 14 (74%) had previously received HCV treatment. Participants' HCV illness perceptions were influenced by fear (of HCV transmission, death, and the well-being of family) and stigma (related to HCV, injection drug use, and incarceration). While some sought education and social and professional support, others self-isolated or engaged in high-risk behaviors to cope. Despite advances in HCV treatment, PWEI continue to experience various forms of stigma and fear surrounding their HCV diagnosis, resulting in delayed HCV care. These findings provide insights into how prison-based healthcare providers can better utilize HCV illness perceptions to evaluate willingness to engage in HCV care among PWEI.
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Affiliation(s)
- Andrea Mambro
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada; (A.M.); (D.O.-P.); (C.D.); (J.C.)
| | - Sameh Mortazhejri
- Centre for Implementation Research, Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, Canada; (S.M.); (A.P.); (G.F.); (J.M.G.); (J.P.)
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
| | - David Ortiz-Paredes
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada; (A.M.); (D.O.-P.); (C.D.); (J.C.)
| | - Andrea Patey
- Centre for Implementation Research, Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, Canada; (S.M.); (A.P.); (G.F.); (J.M.G.); (J.P.)
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- School of Rehabilitation Therapy, Queen’s University, Kingston, Canada
| | - Guillaume Fontaine
- Centre for Implementation Research, Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, Canada; (S.M.); (A.P.); (G.F.); (J.M.G.); (J.P.)
- Centre for Clinical Epidemiology, Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Canada
- Ingram School of Nursing, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada
- Kirby Institute, University of New South Wales, Sydney, Australia
| | - Camille Dussault
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada; (A.M.); (D.O.-P.); (C.D.); (J.C.)
| | - Joseph Cox
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada; (A.M.); (D.O.-P.); (C.D.); (J.C.)
- Department of Medicine, Division of Infectious Diseases and Chronic Viral Illness Service, McGill University Health Centre, Montreal, Canada
- Department of Epidemiology, Biostatistics and Occupational Health, School of Population and Global Health, Faculty of Medicine and Health Sciences, McGill University, Montreal, Canada
| | - Jeremy M. Grimshaw
- Centre for Implementation Research, Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, Canada; (S.M.); (A.P.); (G.F.); (J.M.G.); (J.P.)
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- Department of Medicine, University of Ottawa, Ottawa, Canada
| | - Justin Presseau
- Centre for Implementation Research, Methodological and Implementation Research, Ottawa Hospital Research Institute, Ottawa, Canada; (S.M.); (A.P.); (G.F.); (J.M.G.); (J.P.)
- School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
- School of Psychology, University of Ottawa, Ottawa, Canada
| | - Nadine Kronfli
- Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, Canada; (A.M.); (D.O.-P.); (C.D.); (J.C.)
- Department of Medicine, Division of Infectious Diseases and Chronic Viral Illness Service, McGill University Health Centre, Montreal, Canada
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Fontaine G, Presseau J, Bruneau J, Patey AM, van Allen Z, Mortazhejri S, Høj SB, Hung JHC, Grimshaw JM. "Apparently, you can only be treated once": A qualitative study exploring perceptions of hepatitis C and access to treatment among people who inject drugs visiting a needle and syringe program. THE INTERNATIONAL JOURNAL OF DRUG POLICY 2023; 121:104124. [PMID: 37451942 DOI: 10.1016/j.drugpo.2023.104124] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/05/2022] [Revised: 06/27/2023] [Accepted: 07/06/2023] [Indexed: 07/18/2023]
Abstract
BACKGROUND Access to hepatitis C care within harm reduction community organizations for people who inject drugs is crucial for achieving hepatitis C elimination. However, there is a lack of data on how perceptions of hepatitis C and treatment have changed among individuals visiting these organizations during the era of direct-acting antivirals (DAAs). This study aimed to explore the perceptions of hepatitis C and treatment access for (re)infection among individuals visiting a needle and syringe program in Canada. METHODS Eighteen semi-structured interviews were conducted with individuals who recently injected drugs and visited a needle and syringe program. The interviews were guided by the Common-Sense Self-Regulation Model (CS-SRM) and aimed to explore cognitive and emotional representations of hepatitis C, perceptions of treatment, coping strategies and sources of information. Interviews were audio recorded, transcribed, and coded using thematic analysis. RESULTS Most of the participants identified as male, were of white ethnicity and had a median age of 45. While most underscored the therapeutic advancements and the effectiveness of DAAs, they expressed confusion regarding the mechanisms of access to treatment, especially in cases of reinfection. Perceptions of the controllability of hepatitis C were significantly influenced by the stigmatizing discourse surrounding treatment access, cost, and public coverage. This influence extended to their intentions for seeking treatment. Participants emphasized the social consequences of hepatitis C, including stigma. Emotional representations of hepatitis C evolved along the care cascade, encompassing initial shock at diagnosis and later fear of reinfection following successful treatment. CONCLUSION Nearly a decade after the advent of DAAs, misinformation about treatment access persists. Findings underscore a nexus of internalized and institutionalized stigma associated with hepatitis C, drug use, and the challenges of cost and access to treatment, pointing to a clear need for education and service delivery optimisation in harm reduction community organizations.
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Affiliation(s)
- Guillaume Fontaine
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; Faculty of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5; The Kirby Institute, UNSW, Wallace Wurth Building (C27), Cnr High St & Botany St, Kensington, NSW, Australia 2052.
| | - Justin Presseau
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3; School of Psychology, University of Ottawa, 136 Jean-Jacques Lussier, Vanier Hall, Ottawa, ON, Canada K1N 6N5
| | - Julie Bruneau
- Research Centre, Université de Montréal Hospital Centre, 900 Saint Denis St, Montreal, QC, Canada, H2×0A9; Department of Family and Emergency Medicine, Université de Montréal, 2900, boulevard Édouard-Montpetit, Montréal, QC, Canada, H3T 1J4
| | - Andrea M Patey
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3; School of Rehabilitation Therapy, Queen's University, Louise D Acton Building, 31 George St, Kingston, ON, Canada K7L 3N6
| | - Zack van Allen
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Psychology, University of Ottawa, 136 Jean-Jacques Lussier, Vanier Hall, Ottawa, ON, Canada K1N 6N5
| | - Sameh Mortazhejri
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3
| | - Stine Bordier Høj
- Research Centre, Université de Montréal Hospital Centre, 900 Saint Denis St, Montreal, QC, Canada, H2×0A9
| | - Jui-Hsia Cleo Hung
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3
| | - Jeremy M Grimshaw
- Centre for Implementation Research, Clinical Epidemiology Program, Ottawa Hospital Research Institute, 501 Smyth Road, L1255, Box 711, Ottawa, ON, Canada K1H 8L6; Faculty of Medicine, University of Ottawa, 451 Smyth Road, Ottawa, ON, K1H 8M5; School of Epidemiology and Public Health, University of Ottawa, 600 Peter Morand Crescent, Room 101, Ottawa, ON, Canada K1G 5Z3
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Abstract
Background: Extensive research suggests that positive patient experience leads to improvement in patient health outcomes. Patient experience is particularly important in ambulatory care, where a patient builds a long-term relationship with a provider to manage his/her chronic illness over the span of years. Despite these known benefits, patient experience and its impact on health outcomes is poorly understood in low- and middle-income countries, where resources may be limited and primary care infrastructure spotty. Objectives: This paper aims to better characterize patient experience in a tertiary teaching hospital in Accra, Ghana. Methods: Forty qualitative interviews were conducted in the Outpatient Medical Clinic at Korle-Bu Teaching Hospital in Accra, Ghana. All interviews were transcribed and a qualitative analysis of central themes was evaluated by the study team. Findings: We found patients eager to share their views on clinical care in an ambulatory clinic in Ghana’s largest tertiary care center. Patients voiced desires for decreasing patient wait times, increasing wayfinding resources to navigate the clinic, creating appointment times, and implementing continuity of care with a single physician. The majority of patients also reported feeling actively engaged in their clinical care and emphasized their positive interpersonal interactions with providers. Conclusions: These findings suggest that patients described positive interpersonal experiences with providers at this ambulatory clinic, but identified numerous operational changes that could be made to vastly improve patient experience.
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Nápoles TM, Batchelder AW, Lin A, Moran L, Johnson MO, Shumway M, Luetkemeyer AF, Peters MG, Eagen KV, Riley ED. HCV treatment barriers among HIV/HCV co-infected patients in the US: a qualitative study to understand low uptake among marginalized populations in the DAA era. J Public Health (Oxf) 2020; 41:e283-e289. [PMID: 31044248 DOI: 10.1093/pubmed/fdz045] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/27/2018] [Revised: 03/26/2019] [Accepted: 04/04/2019] [Indexed: 01/15/2023] Open
Abstract
BACKGROUND Well-tolerated, highly effective HCV treatment, known as direct-acting antivirals (DAAs), is now recommended for all people living with HCV, providing the tools for HCV elimination. We sought to understand treatment barriers among low-income HIV/HCV coinfected patients and providers with the goal of increasing uptake. METHODS In 2014, we conducted 26 interviews with HIV/HCV co-infected patients and providers from a San Francisco clinic serving underinsured and publically-insured persons to explore barriers impacting treatment engagement and completion. Interview transcripts were coded, and a thematic analysis was conducted to identify emerging patterns. RESULTS Conditions of poverty-specifically, meeting basic needs for food, shelter, and safety-undermined patient perceptions of self-efficacy to successfully complete HCV treatment programs. While patient participants expressed interest in HCV treatment, the perceived burden of taking daily medications without strong social support was an added challenge. This need for support contradicted provider assumptions that, due to the shorter-course regimens, support is unnecessary in the DAA era. CONCLUSIONS Interferon-free treatments alone are not sufficient to overcome social-structural barriers to HCV treatment and care among low-income HIV/HCV co-infected patients. Support for patients with unmet social needs may facilitate treatment initiation and completion, particularly among those in challenging socioeconomic situations.
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Affiliation(s)
- Tessa M Nápoles
- Department of Medicine, Division of HIV, Infectious Diseases and Global Medicine, Zuckerberg San Francisco General Hospital and Trauma Center, University of California, San Francisco (UCSF), San Francisco, CA, USA.,Department of Social and Behavioral Sciences, University of California, San Francisco, San Francisco, CA, USA
| | - Abigail W Batchelder
- Department of Psychiatry, Massachusetts General Hospital/Harvard Medical School, Boston, MA, USA
| | - Ada Lin
- Department of Medicine, Division of HIV, Infectious Diseases and Global Medicine, Zuckerberg San Francisco General Hospital and Trauma Center, University of California, San Francisco (UCSF), San Francisco, CA, USA
| | - Lissa Moran
- Department of Medicine, Center for AIDS Prevention Studies, University of California, San Francisco, San Francisco, CA, USA
| | - Mallory O Johnson
- Department of Medicine, Center for AIDS Prevention Studies, University of California, San Francisco, San Francisco, CA, USA
| | - Martha Shumway
- Department of Psychiatry, University of California, San Francisco, San Francisco, CA, USA
| | - Anne F Luetkemeyer
- Department of Medicine, Division of HIV, Infectious Diseases and Global Medicine, Zuckerberg San Francisco General Hospital and Trauma Center, University of California, San Francisco (UCSF), San Francisco, CA, USA
| | - Marion G Peters
- Department of Medicine, Division of Gastroenterology, University of California, San Francisco, San Francisco, CA, USA
| | - Kellene V Eagen
- San Francisco Department of Public Health, Department of Family and Community Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Elise D Riley
- Department of Medicine, Division of HIV, Infectious Diseases and Global Medicine, Zuckerberg San Francisco General Hospital and Trauma Center, University of California, San Francisco (UCSF), San Francisco, CA, USA
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Garvey CM, Jones R. The role of stigma and trauma in hepatitis C virus treatment in veterans: Applying the common-sense model. Public Health Nurs 2019; 36:829-835. [PMID: 31583773 DOI: 10.1111/phn.12665] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/28/2019] [Revised: 08/19/2019] [Accepted: 08/28/2019] [Indexed: 01/16/2023]
Abstract
Hepatitis C Virus (HCV), a blood borne pathogen capable of causing severe liver disease, disproportionately affects veterans in the United States. While there are antiviral medications to treat HCV, stigma and trauma in this population may lead to avoidance of care. Those veterans who do undergo treatment have certain illness representations about HCV and its treatment. They undergo treatment even while facing stigma and trauma. The Common-Sense Model may be useful in elucidating how such representations, when matched to an appropriate illness prototype, may inform an action plan of how to respond to HCV. An exploration of the illness representations among veterans with HCV, and the effects of stigma and trauma on these representations, may help to explain how they exercise the choice to undergo treatment and may inform interventions to encourage treatment in veterans who have yet to do so.
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Affiliation(s)
- Casey M Garvey
- School of Nursing, Northeastern University, Boston, Massachusetts
| | - Rachel Jones
- School of Nursing, Northeastern University, Boston, Massachusetts
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Stewart SL, Kwong SL, Bowlus CL, Nguyen TT, Maxwell AE, Bastani R, Chak EW, Chen Jr MS. Racial/ethnic disparities in hepatocellular carcinoma treatment and survival in California, 1988-2012. World J Gastroenterol 2016; 22:8584-8595. [PMID: 27784971 PMCID: PMC5064040 DOI: 10.3748/wjg.v22.i38.8584] [Citation(s) in RCA: 54] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/28/2016] [Revised: 08/16/2016] [Accepted: 09/12/2016] [Indexed: 02/06/2023] Open
Abstract
AIM To describe racial/ethnic differences in treatment and survival among liver cancer patients in a population-based cancer registry.
METHODS Invasive cases of primary hepatocellular carcinoma, n = 33270, diagnosed between January 1, 1988-December 31, 2012 and reported to the California Cancer Registry were analyzed by race/ethnicity, age, gender, geographical region, socio-economic status, time period of diagnosis, stage, surgical treatment, and survival. Patients were classified into 15 racial/ethnic groups: non-Hispanic White (White, n = 12710), Hispanic (n = 8500), Chinese (n = 2723), non-Hispanic Black (Black, n = 2609), Vietnamese (n = 2063), Filipino (n = 1479), Korean (n = 1099), Japanese (n = 658), American Indian/Alaskan Native (AIAN, n = 281), Laotian/Hmong (n = 244), Cambodian (n = 233), South Asian (n = 190), Hawai`ian/Pacific Islander (n = 172), Thai (n = 95), and Other Asian (n = 214). The main outcome measures were receipt of surgical treatment, and cause-specific and all-cause mortality.
RESULTS After adjustment for socio-demographic characteristics, time period, and stage of disease, compared to Whites, Laotian/Hmong [odds ratio (OR) = 0.30, 95%CI: 0.17-0.53], Cambodian (OR = 0.65, 95%CI: 0.45-0.96), AIAN (OR = 0.66, 95%CI: 0.46-0.93), Black (OR = 0.76, 95%CI: 0.67-0.86), and Hispanic (OR = 0.78, 95%CI: 0.72-0.84) patients were less likely, whereas Chinese (OR = 1.58, 95%CI: 1.42-1.77), Koreans (OR = 1.45, 95%CI: 1.24-1.70), Japanese (OR = 1.41, 95%CI: 1.15-1.72), and Vietnamese (OR = 1.26, 95%CI: 1.12-1.42) were more likely to receive surgical treatment. After adjustment for the same covariates and treatment, cause-specific mortality was higher for Laotian/Hmong [(hazard ratio (HR) = 1.50, 95%CI: 1.29-1.73)], Cambodians (HR = 1.35, 95%CI: 1.16-1.58), and Blacks (HR = 1.07, 95%CI: 1.01-1.13), and lower for Chinese (HR = 0.82, 95%CI: 0.77-0.86), Filipinos (HR = 0.84, 95%CI: 0.78-0.90), Vietnamese (HR = 0.85, 95%CI: 0.80-0.90), Koreans (HR = 0.90, 95%CI: 0.83-0.97), and Hispanics (HR = 0.91, 95%CI: 0.88-0.94); results were similar for all-cause mortality.
CONCLUSION Disaggregated data revealed substantial racial/ethnic differences in liver cancer treatment and survival, demonstrating the need for development of targeted interventions to mitigate disparities.
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