Research paper
“It gives me a sense of belonging”: Providing integrated health care and treatment to people with HCV engaged in a psycho-educational support group

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Abstract

Background

Injection drug use (IDU) increases the risk of contracting hepatitis C virus (HCV) yet very few people living with HCV access effective, and potentially curative, treatments. The East Toronto Hepatitis C Program (ETHCP) was developed in 2006 and provides health care, treatment and support to people living with HCV who have complex mental health, physical health and psychosocial needs. The program is anchored in a 16–18 week psychosocial support group located within one of the 3 participating community-based health clinics. The objective of this study was to explore the experiences of individuals engaged in the ETHCP psycho-educational group.

Methods

This phenomenological qualitative study consisted of semi-structured in-depth interviews with twenty randomly selected program participants.

Results

The three dominant themes that emerged from the analysis were program structure, group cohesion and group as agent for change. The ETHCP “one-stop shopping” model provided a stable foundation allowing for the development of group cohesion. Group cohesion was marked by the formation of intense relationships creating a safe and non-judgmental environment where participants could self-reflect, make social connections and feel cared for and accepted. Three types of relationships characterized group cohesion: relationship to self, relationships with individual group members and relationship to group as a whole. Within the nurturing group environment, participants could challenge themselves and others, ultimately enabling change.

Conclusion

The results of our qualitative study suggest that it is the formation of strong group cohesion that facilitated participants’ behavioural change, regardless of their level of substance use. The structure of the group provided stability and was characterized by consistent weekly meetings, knowledge exchange and the provision of multiple services in one location. The support from peers and staff allowed participants to develop personal goals. Participants began to see themselves in a new and changed way; expressing this change in a variety of positive behaviours.

Introduction

Injection drug use (IDU) is the single biggest risk factor for contracting the Hepatitis C Virus (HCV) in Canada (Cornberg et al., 2011, Patrick et al., 2000, Remis, 2007, Zou et al., 2003). Rates of HCV worldwide far exceed rates of human immunodeficiency virus (HIV) and the burden is only expected to increase (Kwong et al., 2010, Remis, 2007, Sherman et al., 2007, World Health Organization, 1998). In fact, a 2010 study found HCV to be the most burdensome pathogen in Ontario in terms of premature mortality, reduced functioning and years lost due to poor health (Kwong et al., 2010). There is effective treatment for HCV leading to cure rates of 65–90% (Myers, Ramji, Bilodeau, Wong, & Feld, 2012). Treatment for HCV lasts between 24 and 48 weeks, involves weekly injections and daily oral medications, and can result in significant physical and neuropsychiatric side-effects (Chopra et al., 2013, Sockalingam et al., 2007). Studies indicate that 50–80% of injection drug users would be somewhat willing or willing to undergo treatment (Doab et al., 2005, Grebely et al., 2009, Strathdee et al., 2005) and that when treated, rates of success are comparable to those seen in non-injection drug users (Backmund et al., 2001, Charlebois et al., 2012, Dimova et al., 2013, Grebely et al., 2007a, Hellard et al., 2009, Matthews et al., 2005, Sylvestre, 2005). Despite the high cure rates and desire to get treated, it is estimated that only one to four percent of injection drug users are treated (Grebely et al., 2009, Strathdee et al., 2005). There are many possible reasons for the discrepancy between the desire for treatment and low treatment uptake such as social marginalization, mental health comorbidities, substance use, homelessness, stigma and discrimination of drug users by health care providers (Butt et al., 2008, Chen et al., 2008, Myles et al., 2011, Schaefer et al., 2007, Treloar and Rhodes, 2009).

There has been an emergence of novel HCV treatment programs that have facilitated access to HCV treatment for drug users. In particular, programs that use a group support model and/or concurrent substance use treatment have proven to have cure rates that are comparable to those reported in non-drug users (Grebely et al., 2007b, Hellard et al., 2009, Stein et al., 2012, Sylvestre and Zweben, 2007). Methadone maintenance therapy (MMT) has been shown to facilitate stability in part through regular health care visits, thereby increasing adherence to HCV treatment (John-Baptiste et al., 2009, Schaefer et al., 2004, Sylvestre and Zweben, 2007). An important question remains whether injection drug users not on MMT can achieve similar success given adequate supports. In particular, there are few studies investigating whether individuals using crack cocaine can be effectively treated for HCV through non-MMT based programs. Such studies are particularly important given that crack cocaine is the drug of choice among marginalized populations in Toronto, Canada, the city where this study is conducted (Health Canada, 2004, Khandor and Mason, 2008).

The objective of our study was to explore the experiences of individuals engaged in the East Toronto Hepatitis C Program (ETHCP) psycho-educational group model. This study was part of a larger program evaluation.

Section snippets

Program description

The ETHCP was developed in 2006 and provides health care, treatment and support to people living with HCV who use substances, many of whom use crack cocaine and have complex mental health, physical health and psychosocial needs (Charlebois et al., 2012). The program name has since changed to the Toronto Community Hepatitis C Program (TCHCP) to reflect service expansion but is referred to as the ETHCP in this article. The program is anchored around a 16–18 week closed psycho-educational support

Participant demographics

A total of twenty group members were interviewed. The average age was 46 years old with a range of twenty-seven to sixty-two. Five of the twenty participants were women. Just under half of participants (eight) were either receiving or had completed HCV treatment. Three participants were co-infected with HIV. Almost all participants reported an income source from social assistance (welfare or disability) and were living on less than $20,000 per year. All participants reported having unstable

Discussion

There has been an emergence of flexible and creative programs that have succeeded in engaging and treating drug users with chronic HCV. These programs use a variety of innovative approaches such as group support, multidisciplinary teams, peer support and offering concurrent addictions treatment. Many of these programs have achieved SVR rates that are comparable to those reported in non-drug users (Charlebois et al., 2012, Dimova et al., 2013, Grebely et al., 2007b, Grebely et al., 2010,

Conclusion

Membership in the ETHCP group had a positive impact on the lives of participants. These positive experiences depended significantly on program structure. The structure of the group provided a firm and stable foundation characterized by consistent weekly meetings, knowledge exchange and the provision of multiple services in one location. This structure fostered the development of group cohesion. Group cohesion was marked by meaningful relationships between group members, with the development and

Conflict of interest statement

We, the authors, declare that we have no conflicts of interest and that this work has not been published or been submitted for publication elsewhere. Funding was provided to the principal investigator (SW) in the form of a grant from Physicians’ Services Incorporated Foundation.

Acknowledgements

We thank the staff of South Riverdale Community Health Centre, Regent Park Community Health Centre and Sherbourne Health Centre and their clients who agreed to participate in this qualitative study. We also thank our ETHCP colleagues, members of the Patient Advisory Board, Tom Appleyard and Kate Mason for reviewing the draft manuscript. Financial support was provided to the principal investigator (SW) through a Physicians’ Services Incorporated Foundation grant. There were no potential

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