A service evaluation to explore Māori experiences of direct-acting antiviral hepatitis C treatment in Aotearoa New Zealand
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Hepatitis C is a blood-borne virus affecting approximately 50,000 New Zealanders, with up to 40% of these people unaware of their hepatitis C positive status.[[1]] Three-quarters of those that are infected with hepatitis C will go on to be chronic carriers of the virus which, untreated, leads to liver cirrhosis occurring in up to 25% of these people. In those with cirrhosis, two to five percent develop liver failure or liver cancer annually.[[1]] In 2016, the Ministry of Health in New Zealand[[2]] formally adopted the World Health Organization’s goal to eliminate hepatitis C by 2030.[[3]] This goal is deemed achievable thanks to the introduction of new, well tolerated, pangenotypic direct-acting antiviral (DAA) treatments, which have at least 95% cure rates of hepatitis C.[[4]] In New Zealand, the main funded DAA treatment is Maviret® (glecaprevir/pibrentasvir). From previous data match work within the Northern Region of New Zealand (top of the North Island, estimated population of 1.9 million, 14% Māori[[5]]) it is estimated that there may be approximately 2,000 people who have hepatitis C but for whom a treatment record was not found.[[6]]
The historical and ongoing contemporary effects of colonisation have contributed to inequitable access to the determinants of health for Māori.[[7]] Colonisation also affects Māori access to other social systems in New Zealand with reduced access to education, employment, housing, and over-representation in the judicial and penal systems. These inequities all contribute to the fact Māori are more likely than non-Māori to use injectable drugs or be incarcerated,[[8]] two of the most common risk factors for hepatitis C transmission. Māori bear a disproportionate burden of hepatitis C infection compared with non-Māori,[[6]] and therefore, are at increased risk of liver failure and liver cancer.
Te Tiriti o Waitangi guarantees Māori the right to culturally safe mainstream health services and the option of kaupapa Māori health services.[[7]] To develop culturally safe services, Māori governance and partnership is required throughout the development process[[7,9]] which includes the inclusion of Māori with lived experience. Regional work is being undertaken to develop a centralised treatment service to identify, contact, and offer treatment to people previously diagnosed with hepatitis C but who remain untreated. Understanding patients’ experiences of healthcare services is important in evaluating current services, as well as improving future services and is central to a kaupapa Māori approach to service development.[[10]] This service evaluation aimed to explore the experiences of Māori in the Northern Region of New Zealand, who have received Maviret® treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation used semi-structured interviews to explore positive and negative aspects of hepatitis C treatment experiences, and to identify aspects of hepatitis C treatment that are important for developing a culturally safe service. District Health Board (DHB) research authorities provided approval (#2021-58; RM RM15005). The Consolidated Criteria for Reporting Qualitative Research (COREQ)[[11]] was used to structure service evaluation reporting.
Eligibility
Participants had to be Māori, 18 years or older, have received Maviret® treatment in the Northern Region since February 2019, have the capacity to consent and be able to undertake an interview for up to 30 minutes. Those unable to provide informed consent were excluded.
Recruitment
Pharmacies that had dispensed Maviret® to Māori patients were identified through dispensing data available to DHB analysts. The pharmacies with the highest number of Maviret® dispensing to Māori were invited by email to support recruitment for the interviews. Pharmacies were provided with a brief evaluation outline and asked to contact potential participants to gauge their interest in participation and seek permission to pass on details to the interviewers. Pharmacies were asked to recruit up to five participants each (purposive sampling) and documented the patients’ consent to pass on details. A pragmatic approach to sample size was utilised, based on resource and time constraints and it was intended to recruit 15–20 participants. A DHB hepatitis nurse specialist and a nurse from the Auckland Drug Information Outreach (Needle Exchange) were also approached and contacted potential participants using the same method as pharmacies.
Consent and data collection
Once provided with details, interviewers contacted potential participants via phone to provide further information about the service evaluation (purpose, process and how results would be used), ask for consent to participate and organise an interview time and method (i.e., phone, video conferencing or in-person). The interviews were conducted by engagement coordinators (female Māori [n=1], female Samoan [n=1]), experienced in strengths-based consumer engagement, who underwent semi-structured interview training (theory and role playing) prior to contacting participants. Participants could have support people present during their interviews and choose if they participated in English or te reo Māori. After consent was gained, interviewers had a general conversation with participants to establish rapport. A question guide (see supplementary material) supported the interview process which had been developed by the service evaluation team and piloted within the team. Interviewers were encouraged to use prompts when needed. Participants were offered the opportunity to receive a summary of findings at the end of the service evaluation and were provided with a $40 supermarket voucher. Repeat interviews were not conducted but each participant was contacted at least two weeks after their interview to check they had received the voucher and whether they had anything further they would like to add. Interviews were audio recorded and transcribed by a contracted transcriptionist. Transcripts were checked for correctness by the interviewers.
Data analysis
Transcripts were read for familiarisation and then coded in NVivo qualitative data analysis software (QSR International Pty Ltd. Version 12, 2018A) with codes then grouped to generate themes by the lead author, a Māori pharmacist and researcher with experience in qualitative and Māori research methods.[[12]] Initial codes and themes were reviewed by the service evaluation team in the context of data from interview transcripts before themes were finalised. A general inductive approach was used to analyse data, with privileging of participant voices and contextualising findings within social, historical, political and cultural contexts for Māori, as aligned with Māori methodological research practices.[[12]] Participant quotes are inserted verbatim and are identified by participant number. No further demographic detail is linked to individual participants to support the maintenance of anonymity.
Results
All twelve participants were Māori and were interviewed between August 2021 and January 2022. The median age of participants was 52.5 years (34–64 years), 67% were male (n=8), and mean interview time was 14 minutes (6–27 minutes). Length of time between diagnosis and treatment ranged from one month to 20 years, with half of participants being treated within 12 months of diagnosis. All participated in English via telephone. Two participants did not have access to telephones and instead a time was arranged with the recruiting pharmacy, interviewer and participant to undertake interviews in a private space at the pharmacy, using the pharmacy phone. The full recruitment pathway is shown in Figure 1.
View Figure 1.
Experiences of DAA treatment for hepatitis C
This section discusses the experiences of participants along their hepatitis C treatment journey. In general, participants talked of very positive experiences, usually in the context of being cured, and discussed that the process was generally simple and straight forward. The proactiveness of health professionals was valued. Some participants also talked about their own proactiveness in getting tested for hepatitis C, and in seeking solutions that worked for them.
Physical and mental impacts of hepatitis C diagnosis and treatment
Hepatitis C impacted on the physical health of some participants making them feel lethargic and generally unwell, and they reported the positive difference in their physical health when they received treatment. Many discussed that it was not until they were treated for hepatitis C that they realised how unwell they had felt.
“You feel the difference, you go from being tired, lethargic…” P1
“You don’t realise [until] you get rid of it as [to] how much it has affected you in the past” P12
Receiving a diagnosis of hepatitis C impacted on participants’ mental health. Various reasons for this included the potential impact on family if they became unwell and could no longer support others, the risk of passing on the infection, and not knowing whether hepatitis C was curable. Part of the burden was related to the perceived stigma with the diagnosis of hepatitis C, and to risk behaviours commonly associated with disease transmission.
“And I was embarrassed to tell anyone, that was a bit traumatic for me, I thought, oh, oh my God” P2
The reasons for starting treatment were varied, and included: not wanting to have the disease; wanting to be there to support family; wanting to improve acute and chronic health and prognosis; and wanting it to be the right time in their life, and with not so many competing priorities. Two participants also discussed that they had not wanted treatment during periods where they were actively injecting drugs, as they had less regard for the consequences of hepatitis C at that time. Starting treatment reduced the mental burden and this was further eased when positive treatment results, the fact that hepatitis C had been cured, were received.
“Once I started the medication it put my mind at ease.” P12
“Yes, it relaxed me so much mentally, that I’m able to sort of not… I don’t have to care anymore it's great.” P1
The importance of proactivity in the treatment pathway
Proactivity by all those involved in the hepatitis C treatment pathway seen as important to participants. Some participants discussed that support from others, including family and health professionals, to get tested and/or treated influenced their likelihood of doing so.
Interviewer: “Was there anyone in particular who made you think of getting treated?”
P9: “Ummm, well my daughter, yeah my daughter was with me for that…Yeah and we agreed that I should have the treatment.”
Proactivity by the treating health professionals and related service was valued. The ideal situation for participants was when health professionals provided information and follow-up, without prompting. This was important at all stages of the treatment pathway from initial testing, to conveying diagnosis, starting treatment, and receiving dispensed medicines right through to communication of treatment effectiveness. Many participants found benefit to having this proactive approach maintained throughout the treatment pathway and follow-up period and reported negative experience when this did not occur.
“[The doctor] rung me twice before I started it, just to make sure he asked me a few questions and he said it was typical of Hep C. Ah, but he said curable and the nurse was more than helpful, everybody has been good with it. The service, I can’t knock it one little bit…Even, even like at the chemist when I missed [picking up the tablets] they were ringing me” P12
The benefits of proactivity by health professionals were supported when health professionals were perceived as “knowledge experts”, and when a good relationship had been developed. Good relationships were not always those that had developed over time, and sometimes rapport could be developed over a short time, again supported by perceived expertise in subject matter and approach.
Touch points through the treatment journey, including telephone calls, were perceived as moments which showed they were cared about, and several participants commented that phone calls from prescribers or the pharmacy which dispensed their medicines would have been appreciated.
“I thought the whole thing was quite positive. Because everyone was trying to get me better.” P9
Participants were asked about their preferences for a wrap-around service, such as provision of support services, and many felt they had not needed extra support. Those that felt it would be useful had not asked for any extra services but expressed that they may have accessed extra support if it had been offered. In the absence of support services, many participants expressed the ability to proactively self-advocate.
“Well, that’s, that’s the part they could fix better they could have people actually ring you... if I hadn’t had gone in myself nothing would’ve been done… it just wouldn't have been done, it wouldn’t have even been screened… Again, it took for me to go in and see my doctor and for me to actually ask my doctor specifically for me to actually get told that, that it was no longer coming up as positive in my blood tests. Basically, there was no contact there was no ‘hey are you alright?’, ‘hey have you had any side effects?’ there's no none of that there's just go home and take the tablets and basically don’t hear anything back unless you go in and chase it up.” P1
“I was like saying to them well hang on... the doctor said I was having this with food and I read it in the brochure thing too you know. You don’t need to have it with food, but I suppose it just it works better I don’t know the story is behind it but… and, yeah” P5
Despite the clear articulation of self-advocacy by many participants, when participants were asked specifically about whether they had felt in control during their treatment journey, participants were often unsure how to answer this. The most direct responses came from those who had been treated in prison, one who said, “I went to jail, and they put you on it” (P3). This participant went on to discuss that they did not receive medicines at the correct times from prison staff, which affected adherence when they tried to exert control over the situation.
“So, I refused [the Maviret®] till they started playing my game” P3
In addition to how participants found it difficult to answer direct questions regarding their feeling of control within the treatment process, when participants were asked how the service could better support the needs of Māori, there was limited response to this question, although participants’ focus was generally on supportive care.
Accessibility of treatment-related care
Treatment accessibility was regarded as important by participants, many of whom discussed that the prescriber and dispensing pharmacy needed to be conveniently located. The hepatitis C treatment pathway was generally regarded as simple and straightforward by most.
“Well [the treatment process] was pretty straightforward. It was so easy, it was ridiculous.” P10
“As far as pharmacies go, it's just a pharmacy, you know. I… I only go there because it's my local and it was just handy that they happen to be one of the places where you could get the medication sent to.” P1
A range of barriers to treatment access were discussed. Several participants commented on complexities moving between dispensing pharmacies with extra steps having to be undertaken. Many participants found the large tablets difficult to swallow, which felt like a daily barrier to access, some psyching themselves up each day to take them, although none reported that they stopped taking it for this reason.
“They were bloody huge; they were horse tablets…You’d have to sit there for half an hour and try and get that one down before you could take the next one.” P1
Some perceived that the focus of initial discussions were on how they had got hepatitis C rather than the treatment.
“The answers just weren’t there and there was… and they’d say where did I get it from, blah, blah, blah, and not even I knew that.…” P6
Many participants talked about the difficulty of incorporating regular medicine-taking into their daily routine, and how they developed mechanisms and routines to support adherence.
“It was a bit annoying, I set me alarm clock to 6 o’clock everyday so that if I - otherwise I would of forgotten - so every time the alarm clock went off I knew what it was for. So, I took my pills you know… The 1st week was the tricky, I nearly forget once. After the first couple of weeks, it just becomes like everyday things. I just remember the moment my alarm goes off within an hour I make sure I take it… if I wasn’t home and the alarm went off, I make sure I took them when I walk in the door. Now and again, I would take a pack of 3 with me.” P12
This quote provides an example of how perceived barriers prior to treatment, or actual barriers early in care, could be overcome by participants during the course of DAA treatment.
Words of wisdom
Participants were asked to suggest approaches that they felt would support the treatment journey for others. They were also asked specifically what their “words of wisdom” were to those who were hepatitis C positive but had yet to begin their treatment journey. The support of treatment was overwhelming, with all participants encouraging others to have treatment.
“I’d just say go for it grab it with both hands, it’s awesome” P10
“Even though I was embarrassed of [the diagnosis] in the beginning, do you know what I mean, and it seems like a process but when I spoke and I said, ‘can this kill you?’ And they said, ‘yes it can’... So, once you know… it’s a very simple process to get rid of it.” P2
Participants discussed that the new treatment options, and the fact that hepatitis C is curable, need to be better communicated, and several discussed the value of these messages being delivered by those with lived experience of hepatitis C and its treatment. Four participants had received earlier types of hepatitis C treatment (e.g., interferon and ribavirin) and all discussed the contrast between older treatments and Maviret®. Other treatment courses were longer with challenging adverse effect profiles, whereas the participants in this evaluation reported either very mild effects like minor tiredness and nausea, or no adverse effects at all, which provided further drive to support treatment with Maviret®. Some participants also discussed that it felt like they would need to commit to a long course of therapy but, the treatment period went by very quickly.
“[Initially the treatment period] it just felt like forever; at this point weeks have just flown past me.” P5
As discussed above, the improvement in health was seen as something that could motivate people to be treated with one participant expressing that this alone should be enough incentive to undertake treatment.
“You know, my incentive was having my health back. And that’s, that’s all I needed… Who doesn’t think their health is important enough already?” P1
“At first, I was a bit sceptical, um once it started to work how can anyone be sceptical. Now it’s gone so that’s the biggest gift to me, that it’s gone.” P12
Discussion
This is the first known evaluation to explore Māori experiences of DAA hepatitis C treatment. This evaluation highlighted the physical and mental impact hepatitis C diagnosis can have, and that treatment with Maviret® leads to improvement in these domains, and proactivity by health professionals throughout the treatment journey was valued and that participants had the ability to self-advocate when needs were not met by other services. The rich qualitative data enabled the identification of various themes consistently, and the resultant recommendations (Box 1) are able to be incorporated into future hepatitis C treatment services in New Zealand.
Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey. Far from being reproachful that they might be being “nagged” or “hounded” by health services, they embraced the contact, and some were in fact suggesting there should be more of this. Those with hepatitis C who disengage from health services are often hard to reach by phone and may lack transportation.[[13]] Healthcare providers need to have various persistent strategies to find, contact and engage with these patients in order to address individual and structural barriers to engaging with hepatitis C related healthcare, the effectiveness of which could be supported by robust information technology solutions. Our evaluation showed the value of having responsive patient–provider relationship as well as convenient locations of treatment sites enhancing access hepatitis C treatment.
New Zealand academic literature shows that hepatitis C treatment reduces disease burden,[[14]] and that DAA treatment is safe and efficacious.[[15]] However, the value of treating hepatitis C seemed to be a revelation for most participants in this evaluation. This signals that greater communication and awareness building needs to be undertaken amongst Māori at risk from hepatitis C (and their whānau) to ensure the availability of free access to curative treatment is known. Whilst studies have shown that comprehensive hepatitis C knowledge motivates screening by primary care providers,[[16]] there is a paucity of such data from a “patient’s viewpoint” and none that is specifically applicable for Māori in New Zealand. There is poor knowledge of hepatitis C and its treatment among the public and health professionals[[17,18]] and this evaluation further highlights that more activities are needed to socialise this, including utilising those with lived experiences to share their stories.
Stigma associated with a hepatitis C diagnosis, identified in this evaluation, may be another barrier for accessing curative treatment. Previous research identified that this stigma presents as fear of contracting a contagious, chronic illness, assumptions regarding “socially unacceptable” behaviours relating to hepatitis C infection, as well as societal attitudes towards traditionally marginalised populations.[[19]] The authors of this work postulate that these manifestations negatively affect people’s perception of being “deserving” of treatment[[19]] which, for Māori, could be further compounded by experiences of institutional and internalised racism. Managing risk relating to potential exposure mechanisms is important to reduce the potential for re-infection during or post-treatment; however, there is the potential that these discussions at the point of diagnosis may affect both patient–provider relationships and a person’s willingness to accept treatment. It is important to note that people who continue to inject drugs are eligible to receive treatment in New Zealand. DAA treatment for hepatitis C is as effective in those who inject drugs as those who do not;[[20]] and treatment offers benefit at the individual, whānau, and population level.
Adherence to DAA therapy is important for treatment success with those with lower adherence less likely to have a sustained virological response (i.e., be cured) post treatment.[[21]] Participants in the current evaluation discussed the importance of incorporating DAA tablet taking into their daily routine to help with taking the medicine as prescribed. Setting up daily electronic reminders were also useful and health professionals could have a role in supporting this. The delivery of supportive care and education by clinicians using telehealth has also been shown to improve adherence with hepatitis C treatment compared to “usual care”.[[22]] Previous research has shown that those most likely to benefit from increased adherence support are those that experience multiple marginalisation (for example ethnic marginalisation and incarceration),[[23]] which speaks to the need to address service and structural issues as well as medicines adherence to best increase the likelihood of treatment success.
The positive impact of treatment on physical and mental health is supported by New Zealand and Australian research where patients self-reported significant, positive impacts on their lives post curative hepatitis C treatment, particularly in alleviating anxiety and a fear of infecting others.[[14,24]] In people that are hepatitis C positive and who inject drugs, hepatitis C cure may be just one aspect of change that people are seeking in their lives, within the context of a more holistic approach to their wellbeing. Other changes may include improving social relationships and personal identity, improving mental health, and managing future risk.[[25]] It is therefore important that these benefits are proactively communicated to promote uptake of treatment, and that the health service providing care incorporates wraparound services to ensure the wider concept of wellbeing is managed. This approach is in line with a Whānau Ora approach where outcomes beyond individual, physical benefits, are articulated and valued.[[26]]
The right for Māori to have care options, including culturally safe mainstream services and kaupapa Māori services, as well as the right for Māori to be involved in all levels of health service development are set out in Te Tiriti o Waitangi.[[7]] None of the participants gave examples of services that upheld kaupapa Māori practices or principles of care and, similar to when asked about levels of control in the treatment journey, participants did not articulate how services can better support Māori specifically. There is the potential that those that are marginalised, and unaccustomed to having power in the health care setting,[[27]] may be less likely to identify control and self-determined care as important, and care needs to be taken in the methods to strengthen participants’ ability to contribute.[[28]] Despite this, participants offered many ideas for positive improvement to services and therefore this evaluation is even more important as it both presents their voices and seeks to incorporate this into future care options.
Further research is recommended to include those at risk of hepatitis C but not tested, or who have been diagnosed but not treated, to understand the barriers to diagnosis and treatment.
Strengths and limitations
This is the first known evaluation that focuses on Māori experiences of DAA treatment, and it provides up-to-date insight given all received treatment within the last three years. Care was taken to privilege the voice of participants in this evaluation. Some interviews were short, limiting the richness of the data. There is potential that responses could have been further contextualised in longer interviews and with more follow-up questions; however, length was driven by participants, and interviewers had been guided to allow for this to ensure the interview process was not regarded negatively by participants rather than necessarily pushing for expansion of responses. Reasons for short interviews, postulated by the research team, included communication style (brief participant responses that were not expanded on during prompting); interviewer experience (very experienced interviewers may have been able to elicit extended responses while maintain good rapport); and interviewers fitting in with participant schedules (some participants contacted researchers during short work breaks to participate and were not open to moving the times). Reluctance to be interviewed did not appear to be an issue. In-person interviews may have increased the ability to build rapport and the extent of data provided although restrictions relating to COVID-19 impacted on this approach. In contrast, perceived anonymity over the phone may have increased disclosure. Those that volunteered to be involved in this research may be more likely to feel able to self-advocate and, therefore, this theme may not come through as strongly in a different cohort. Additionally, all participants had positive treatment outcomes and there is the potential that participants with variable or negative treatment outcomes may have told more critical stories of service provision. The number of participants was lower than the target due to recruitment difficulties impacted both by the COVID-19 pandemic and lack of up-to-date contact details for potential participants. This evaluation involved 12 participants in the Northern Region of New Zealand, and it is not intended that it be representative of, or generalisable to, all Māori experiences of hepatitis C treatment. Findings will be used to enhance the development of new hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Summary
Abstract
Aim
Hepatitis C, and its associated life-limiting sequalae, disproportionately affect Māori. Despite availability of fully funded effective and well-tolerated oral direct-acting anti-viral agents (DAA), many in New Zealand remain untreated. This service evaluation aimed to explore the experiences of Māori who have received DAA treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation recruited eligible participants (Māori, 18 years+, DAA treatment since February 2019) through health care providers. Semi-structured interviews were undertaken over the telephone with consenting participants. General inductive analysis was used to generate themes contextualising findings within cultural contexts for Māori, as aligned with Māori methodological research practices.
Results
Twelve participants were interviewed. The physical and mental impact hepatitis C can have, and that treatment with DAA leads to improvement in these domains, were highlighted. Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey, with participants articulating the ability to self-advocate when needs were not met by other services.
Conclusion
Findings can be used to enhance the development of further hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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A service evaluation to explore Māori experiences of direct-acting antiviral hepatitis C treatment in Aotearoa New Zealand
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Hepatitis C is a blood-borne virus affecting approximately 50,000 New Zealanders, with up to 40% of these people unaware of their hepatitis C positive status.[[1]] Three-quarters of those that are infected with hepatitis C will go on to be chronic carriers of the virus which, untreated, leads to liver cirrhosis occurring in up to 25% of these people. In those with cirrhosis, two to five percent develop liver failure or liver cancer annually.[[1]] In 2016, the Ministry of Health in New Zealand[[2]] formally adopted the World Health Organization’s goal to eliminate hepatitis C by 2030.[[3]] This goal is deemed achievable thanks to the introduction of new, well tolerated, pangenotypic direct-acting antiviral (DAA) treatments, which have at least 95% cure rates of hepatitis C.[[4]] In New Zealand, the main funded DAA treatment is Maviret® (glecaprevir/pibrentasvir). From previous data match work within the Northern Region of New Zealand (top of the North Island, estimated population of 1.9 million, 14% Māori[[5]]) it is estimated that there may be approximately 2,000 people who have hepatitis C but for whom a treatment record was not found.[[6]]
The historical and ongoing contemporary effects of colonisation have contributed to inequitable access to the determinants of health for Māori.[[7]] Colonisation also affects Māori access to other social systems in New Zealand with reduced access to education, employment, housing, and over-representation in the judicial and penal systems. These inequities all contribute to the fact Māori are more likely than non-Māori to use injectable drugs or be incarcerated,[[8]] two of the most common risk factors for hepatitis C transmission. Māori bear a disproportionate burden of hepatitis C infection compared with non-Māori,[[6]] and therefore, are at increased risk of liver failure and liver cancer.
Te Tiriti o Waitangi guarantees Māori the right to culturally safe mainstream health services and the option of kaupapa Māori health services.[[7]] To develop culturally safe services, Māori governance and partnership is required throughout the development process[[7,9]] which includes the inclusion of Māori with lived experience. Regional work is being undertaken to develop a centralised treatment service to identify, contact, and offer treatment to people previously diagnosed with hepatitis C but who remain untreated. Understanding patients’ experiences of healthcare services is important in evaluating current services, as well as improving future services and is central to a kaupapa Māori approach to service development.[[10]] This service evaluation aimed to explore the experiences of Māori in the Northern Region of New Zealand, who have received Maviret® treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation used semi-structured interviews to explore positive and negative aspects of hepatitis C treatment experiences, and to identify aspects of hepatitis C treatment that are important for developing a culturally safe service. District Health Board (DHB) research authorities provided approval (#2021-58; RM RM15005). The Consolidated Criteria for Reporting Qualitative Research (COREQ)[[11]] was used to structure service evaluation reporting.
Eligibility
Participants had to be Māori, 18 years or older, have received Maviret® treatment in the Northern Region since February 2019, have the capacity to consent and be able to undertake an interview for up to 30 minutes. Those unable to provide informed consent were excluded.
Recruitment
Pharmacies that had dispensed Maviret® to Māori patients were identified through dispensing data available to DHB analysts. The pharmacies with the highest number of Maviret® dispensing to Māori were invited by email to support recruitment for the interviews. Pharmacies were provided with a brief evaluation outline and asked to contact potential participants to gauge their interest in participation and seek permission to pass on details to the interviewers. Pharmacies were asked to recruit up to five participants each (purposive sampling) and documented the patients’ consent to pass on details. A pragmatic approach to sample size was utilised, based on resource and time constraints and it was intended to recruit 15–20 participants. A DHB hepatitis nurse specialist and a nurse from the Auckland Drug Information Outreach (Needle Exchange) were also approached and contacted potential participants using the same method as pharmacies.
Consent and data collection
Once provided with details, interviewers contacted potential participants via phone to provide further information about the service evaluation (purpose, process and how results would be used), ask for consent to participate and organise an interview time and method (i.e., phone, video conferencing or in-person). The interviews were conducted by engagement coordinators (female Māori [n=1], female Samoan [n=1]), experienced in strengths-based consumer engagement, who underwent semi-structured interview training (theory and role playing) prior to contacting participants. Participants could have support people present during their interviews and choose if they participated in English or te reo Māori. After consent was gained, interviewers had a general conversation with participants to establish rapport. A question guide (see supplementary material) supported the interview process which had been developed by the service evaluation team and piloted within the team. Interviewers were encouraged to use prompts when needed. Participants were offered the opportunity to receive a summary of findings at the end of the service evaluation and were provided with a $40 supermarket voucher. Repeat interviews were not conducted but each participant was contacted at least two weeks after their interview to check they had received the voucher and whether they had anything further they would like to add. Interviews were audio recorded and transcribed by a contracted transcriptionist. Transcripts were checked for correctness by the interviewers.
Data analysis
Transcripts were read for familiarisation and then coded in NVivo qualitative data analysis software (QSR International Pty Ltd. Version 12, 2018A) with codes then grouped to generate themes by the lead author, a Māori pharmacist and researcher with experience in qualitative and Māori research methods.[[12]] Initial codes and themes were reviewed by the service evaluation team in the context of data from interview transcripts before themes were finalised. A general inductive approach was used to analyse data, with privileging of participant voices and contextualising findings within social, historical, political and cultural contexts for Māori, as aligned with Māori methodological research practices.[[12]] Participant quotes are inserted verbatim and are identified by participant number. No further demographic detail is linked to individual participants to support the maintenance of anonymity.
Results
All twelve participants were Māori and were interviewed between August 2021 and January 2022. The median age of participants was 52.5 years (34–64 years), 67% were male (n=8), and mean interview time was 14 minutes (6–27 minutes). Length of time between diagnosis and treatment ranged from one month to 20 years, with half of participants being treated within 12 months of diagnosis. All participated in English via telephone. Two participants did not have access to telephones and instead a time was arranged with the recruiting pharmacy, interviewer and participant to undertake interviews in a private space at the pharmacy, using the pharmacy phone. The full recruitment pathway is shown in Figure 1.
View Figure 1.
Experiences of DAA treatment for hepatitis C
This section discusses the experiences of participants along their hepatitis C treatment journey. In general, participants talked of very positive experiences, usually in the context of being cured, and discussed that the process was generally simple and straight forward. The proactiveness of health professionals was valued. Some participants also talked about their own proactiveness in getting tested for hepatitis C, and in seeking solutions that worked for them.
Physical and mental impacts of hepatitis C diagnosis and treatment
Hepatitis C impacted on the physical health of some participants making them feel lethargic and generally unwell, and they reported the positive difference in their physical health when they received treatment. Many discussed that it was not until they were treated for hepatitis C that they realised how unwell they had felt.
“You feel the difference, you go from being tired, lethargic…” P1
“You don’t realise [until] you get rid of it as [to] how much it has affected you in the past” P12
Receiving a diagnosis of hepatitis C impacted on participants’ mental health. Various reasons for this included the potential impact on family if they became unwell and could no longer support others, the risk of passing on the infection, and not knowing whether hepatitis C was curable. Part of the burden was related to the perceived stigma with the diagnosis of hepatitis C, and to risk behaviours commonly associated with disease transmission.
“And I was embarrassed to tell anyone, that was a bit traumatic for me, I thought, oh, oh my God” P2
The reasons for starting treatment were varied, and included: not wanting to have the disease; wanting to be there to support family; wanting to improve acute and chronic health and prognosis; and wanting it to be the right time in their life, and with not so many competing priorities. Two participants also discussed that they had not wanted treatment during periods where they were actively injecting drugs, as they had less regard for the consequences of hepatitis C at that time. Starting treatment reduced the mental burden and this was further eased when positive treatment results, the fact that hepatitis C had been cured, were received.
“Once I started the medication it put my mind at ease.” P12
“Yes, it relaxed me so much mentally, that I’m able to sort of not… I don’t have to care anymore it's great.” P1
The importance of proactivity in the treatment pathway
Proactivity by all those involved in the hepatitis C treatment pathway seen as important to participants. Some participants discussed that support from others, including family and health professionals, to get tested and/or treated influenced their likelihood of doing so.
Interviewer: “Was there anyone in particular who made you think of getting treated?”
P9: “Ummm, well my daughter, yeah my daughter was with me for that…Yeah and we agreed that I should have the treatment.”
Proactivity by the treating health professionals and related service was valued. The ideal situation for participants was when health professionals provided information and follow-up, without prompting. This was important at all stages of the treatment pathway from initial testing, to conveying diagnosis, starting treatment, and receiving dispensed medicines right through to communication of treatment effectiveness. Many participants found benefit to having this proactive approach maintained throughout the treatment pathway and follow-up period and reported negative experience when this did not occur.
“[The doctor] rung me twice before I started it, just to make sure he asked me a few questions and he said it was typical of Hep C. Ah, but he said curable and the nurse was more than helpful, everybody has been good with it. The service, I can’t knock it one little bit…Even, even like at the chemist when I missed [picking up the tablets] they were ringing me” P12
The benefits of proactivity by health professionals were supported when health professionals were perceived as “knowledge experts”, and when a good relationship had been developed. Good relationships were not always those that had developed over time, and sometimes rapport could be developed over a short time, again supported by perceived expertise in subject matter and approach.
Touch points through the treatment journey, including telephone calls, were perceived as moments which showed they were cared about, and several participants commented that phone calls from prescribers or the pharmacy which dispensed their medicines would have been appreciated.
“I thought the whole thing was quite positive. Because everyone was trying to get me better.” P9
Participants were asked about their preferences for a wrap-around service, such as provision of support services, and many felt they had not needed extra support. Those that felt it would be useful had not asked for any extra services but expressed that they may have accessed extra support if it had been offered. In the absence of support services, many participants expressed the ability to proactively self-advocate.
“Well, that’s, that’s the part they could fix better they could have people actually ring you... if I hadn’t had gone in myself nothing would’ve been done… it just wouldn't have been done, it wouldn’t have even been screened… Again, it took for me to go in and see my doctor and for me to actually ask my doctor specifically for me to actually get told that, that it was no longer coming up as positive in my blood tests. Basically, there was no contact there was no ‘hey are you alright?’, ‘hey have you had any side effects?’ there's no none of that there's just go home and take the tablets and basically don’t hear anything back unless you go in and chase it up.” P1
“I was like saying to them well hang on... the doctor said I was having this with food and I read it in the brochure thing too you know. You don’t need to have it with food, but I suppose it just it works better I don’t know the story is behind it but… and, yeah” P5
Despite the clear articulation of self-advocacy by many participants, when participants were asked specifically about whether they had felt in control during their treatment journey, participants were often unsure how to answer this. The most direct responses came from those who had been treated in prison, one who said, “I went to jail, and they put you on it” (P3). This participant went on to discuss that they did not receive medicines at the correct times from prison staff, which affected adherence when they tried to exert control over the situation.
“So, I refused [the Maviret®] till they started playing my game” P3
In addition to how participants found it difficult to answer direct questions regarding their feeling of control within the treatment process, when participants were asked how the service could better support the needs of Māori, there was limited response to this question, although participants’ focus was generally on supportive care.
Accessibility of treatment-related care
Treatment accessibility was regarded as important by participants, many of whom discussed that the prescriber and dispensing pharmacy needed to be conveniently located. The hepatitis C treatment pathway was generally regarded as simple and straightforward by most.
“Well [the treatment process] was pretty straightforward. It was so easy, it was ridiculous.” P10
“As far as pharmacies go, it's just a pharmacy, you know. I… I only go there because it's my local and it was just handy that they happen to be one of the places where you could get the medication sent to.” P1
A range of barriers to treatment access were discussed. Several participants commented on complexities moving between dispensing pharmacies with extra steps having to be undertaken. Many participants found the large tablets difficult to swallow, which felt like a daily barrier to access, some psyching themselves up each day to take them, although none reported that they stopped taking it for this reason.
“They were bloody huge; they were horse tablets…You’d have to sit there for half an hour and try and get that one down before you could take the next one.” P1
Some perceived that the focus of initial discussions were on how they had got hepatitis C rather than the treatment.
“The answers just weren’t there and there was… and they’d say where did I get it from, blah, blah, blah, and not even I knew that.…” P6
Many participants talked about the difficulty of incorporating regular medicine-taking into their daily routine, and how they developed mechanisms and routines to support adherence.
“It was a bit annoying, I set me alarm clock to 6 o’clock everyday so that if I - otherwise I would of forgotten - so every time the alarm clock went off I knew what it was for. So, I took my pills you know… The 1st week was the tricky, I nearly forget once. After the first couple of weeks, it just becomes like everyday things. I just remember the moment my alarm goes off within an hour I make sure I take it… if I wasn’t home and the alarm went off, I make sure I took them when I walk in the door. Now and again, I would take a pack of 3 with me.” P12
This quote provides an example of how perceived barriers prior to treatment, or actual barriers early in care, could be overcome by participants during the course of DAA treatment.
Words of wisdom
Participants were asked to suggest approaches that they felt would support the treatment journey for others. They were also asked specifically what their “words of wisdom” were to those who were hepatitis C positive but had yet to begin their treatment journey. The support of treatment was overwhelming, with all participants encouraging others to have treatment.
“I’d just say go for it grab it with both hands, it’s awesome” P10
“Even though I was embarrassed of [the diagnosis] in the beginning, do you know what I mean, and it seems like a process but when I spoke and I said, ‘can this kill you?’ And they said, ‘yes it can’... So, once you know… it’s a very simple process to get rid of it.” P2
Participants discussed that the new treatment options, and the fact that hepatitis C is curable, need to be better communicated, and several discussed the value of these messages being delivered by those with lived experience of hepatitis C and its treatment. Four participants had received earlier types of hepatitis C treatment (e.g., interferon and ribavirin) and all discussed the contrast between older treatments and Maviret®. Other treatment courses were longer with challenging adverse effect profiles, whereas the participants in this evaluation reported either very mild effects like minor tiredness and nausea, or no adverse effects at all, which provided further drive to support treatment with Maviret®. Some participants also discussed that it felt like they would need to commit to a long course of therapy but, the treatment period went by very quickly.
“[Initially the treatment period] it just felt like forever; at this point weeks have just flown past me.” P5
As discussed above, the improvement in health was seen as something that could motivate people to be treated with one participant expressing that this alone should be enough incentive to undertake treatment.
“You know, my incentive was having my health back. And that’s, that’s all I needed… Who doesn’t think their health is important enough already?” P1
“At first, I was a bit sceptical, um once it started to work how can anyone be sceptical. Now it’s gone so that’s the biggest gift to me, that it’s gone.” P12
Discussion
This is the first known evaluation to explore Māori experiences of DAA hepatitis C treatment. This evaluation highlighted the physical and mental impact hepatitis C diagnosis can have, and that treatment with Maviret® leads to improvement in these domains, and proactivity by health professionals throughout the treatment journey was valued and that participants had the ability to self-advocate when needs were not met by other services. The rich qualitative data enabled the identification of various themes consistently, and the resultant recommendations (Box 1) are able to be incorporated into future hepatitis C treatment services in New Zealand.
Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey. Far from being reproachful that they might be being “nagged” or “hounded” by health services, they embraced the contact, and some were in fact suggesting there should be more of this. Those with hepatitis C who disengage from health services are often hard to reach by phone and may lack transportation.[[13]] Healthcare providers need to have various persistent strategies to find, contact and engage with these patients in order to address individual and structural barriers to engaging with hepatitis C related healthcare, the effectiveness of which could be supported by robust information technology solutions. Our evaluation showed the value of having responsive patient–provider relationship as well as convenient locations of treatment sites enhancing access hepatitis C treatment.
New Zealand academic literature shows that hepatitis C treatment reduces disease burden,[[14]] and that DAA treatment is safe and efficacious.[[15]] However, the value of treating hepatitis C seemed to be a revelation for most participants in this evaluation. This signals that greater communication and awareness building needs to be undertaken amongst Māori at risk from hepatitis C (and their whānau) to ensure the availability of free access to curative treatment is known. Whilst studies have shown that comprehensive hepatitis C knowledge motivates screening by primary care providers,[[16]] there is a paucity of such data from a “patient’s viewpoint” and none that is specifically applicable for Māori in New Zealand. There is poor knowledge of hepatitis C and its treatment among the public and health professionals[[17,18]] and this evaluation further highlights that more activities are needed to socialise this, including utilising those with lived experiences to share their stories.
Stigma associated with a hepatitis C diagnosis, identified in this evaluation, may be another barrier for accessing curative treatment. Previous research identified that this stigma presents as fear of contracting a contagious, chronic illness, assumptions regarding “socially unacceptable” behaviours relating to hepatitis C infection, as well as societal attitudes towards traditionally marginalised populations.[[19]] The authors of this work postulate that these manifestations negatively affect people’s perception of being “deserving” of treatment[[19]] which, for Māori, could be further compounded by experiences of institutional and internalised racism. Managing risk relating to potential exposure mechanisms is important to reduce the potential for re-infection during or post-treatment; however, there is the potential that these discussions at the point of diagnosis may affect both patient–provider relationships and a person’s willingness to accept treatment. It is important to note that people who continue to inject drugs are eligible to receive treatment in New Zealand. DAA treatment for hepatitis C is as effective in those who inject drugs as those who do not;[[20]] and treatment offers benefit at the individual, whānau, and population level.
Adherence to DAA therapy is important for treatment success with those with lower adherence less likely to have a sustained virological response (i.e., be cured) post treatment.[[21]] Participants in the current evaluation discussed the importance of incorporating DAA tablet taking into their daily routine to help with taking the medicine as prescribed. Setting up daily electronic reminders were also useful and health professionals could have a role in supporting this. The delivery of supportive care and education by clinicians using telehealth has also been shown to improve adherence with hepatitis C treatment compared to “usual care”.[[22]] Previous research has shown that those most likely to benefit from increased adherence support are those that experience multiple marginalisation (for example ethnic marginalisation and incarceration),[[23]] which speaks to the need to address service and structural issues as well as medicines adherence to best increase the likelihood of treatment success.
The positive impact of treatment on physical and mental health is supported by New Zealand and Australian research where patients self-reported significant, positive impacts on their lives post curative hepatitis C treatment, particularly in alleviating anxiety and a fear of infecting others.[[14,24]] In people that are hepatitis C positive and who inject drugs, hepatitis C cure may be just one aspect of change that people are seeking in their lives, within the context of a more holistic approach to their wellbeing. Other changes may include improving social relationships and personal identity, improving mental health, and managing future risk.[[25]] It is therefore important that these benefits are proactively communicated to promote uptake of treatment, and that the health service providing care incorporates wraparound services to ensure the wider concept of wellbeing is managed. This approach is in line with a Whānau Ora approach where outcomes beyond individual, physical benefits, are articulated and valued.[[26]]
The right for Māori to have care options, including culturally safe mainstream services and kaupapa Māori services, as well as the right for Māori to be involved in all levels of health service development are set out in Te Tiriti o Waitangi.[[7]] None of the participants gave examples of services that upheld kaupapa Māori practices or principles of care and, similar to when asked about levels of control in the treatment journey, participants did not articulate how services can better support Māori specifically. There is the potential that those that are marginalised, and unaccustomed to having power in the health care setting,[[27]] may be less likely to identify control and self-determined care as important, and care needs to be taken in the methods to strengthen participants’ ability to contribute.[[28]] Despite this, participants offered many ideas for positive improvement to services and therefore this evaluation is even more important as it both presents their voices and seeks to incorporate this into future care options.
Further research is recommended to include those at risk of hepatitis C but not tested, or who have been diagnosed but not treated, to understand the barriers to diagnosis and treatment.
Strengths and limitations
This is the first known evaluation that focuses on Māori experiences of DAA treatment, and it provides up-to-date insight given all received treatment within the last three years. Care was taken to privilege the voice of participants in this evaluation. Some interviews were short, limiting the richness of the data. There is potential that responses could have been further contextualised in longer interviews and with more follow-up questions; however, length was driven by participants, and interviewers had been guided to allow for this to ensure the interview process was not regarded negatively by participants rather than necessarily pushing for expansion of responses. Reasons for short interviews, postulated by the research team, included communication style (brief participant responses that were not expanded on during prompting); interviewer experience (very experienced interviewers may have been able to elicit extended responses while maintain good rapport); and interviewers fitting in with participant schedules (some participants contacted researchers during short work breaks to participate and were not open to moving the times). Reluctance to be interviewed did not appear to be an issue. In-person interviews may have increased the ability to build rapport and the extent of data provided although restrictions relating to COVID-19 impacted on this approach. In contrast, perceived anonymity over the phone may have increased disclosure. Those that volunteered to be involved in this research may be more likely to feel able to self-advocate and, therefore, this theme may not come through as strongly in a different cohort. Additionally, all participants had positive treatment outcomes and there is the potential that participants with variable or negative treatment outcomes may have told more critical stories of service provision. The number of participants was lower than the target due to recruitment difficulties impacted both by the COVID-19 pandemic and lack of up-to-date contact details for potential participants. This evaluation involved 12 participants in the Northern Region of New Zealand, and it is not intended that it be representative of, or generalisable to, all Māori experiences of hepatitis C treatment. Findings will be used to enhance the development of new hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Summary
Abstract
Aim
Hepatitis C, and its associated life-limiting sequalae, disproportionately affect Māori. Despite availability of fully funded effective and well-tolerated oral direct-acting anti-viral agents (DAA), many in New Zealand remain untreated. This service evaluation aimed to explore the experiences of Māori who have received DAA treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation recruited eligible participants (Māori, 18 years+, DAA treatment since February 2019) through health care providers. Semi-structured interviews were undertaken over the telephone with consenting participants. General inductive analysis was used to generate themes contextualising findings within cultural contexts for Māori, as aligned with Māori methodological research practices.
Results
Twelve participants were interviewed. The physical and mental impact hepatitis C can have, and that treatment with DAA leads to improvement in these domains, were highlighted. Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey, with participants articulating the ability to self-advocate when needs were not met by other services.
Conclusion
Findings can be used to enhance the development of further hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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A service evaluation to explore Māori experiences of direct-acting antiviral hepatitis C treatment in Aotearoa New Zealand
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Hepatitis C is a blood-borne virus affecting approximately 50,000 New Zealanders, with up to 40% of these people unaware of their hepatitis C positive status.[[1]] Three-quarters of those that are infected with hepatitis C will go on to be chronic carriers of the virus which, untreated, leads to liver cirrhosis occurring in up to 25% of these people. In those with cirrhosis, two to five percent develop liver failure or liver cancer annually.[[1]] In 2016, the Ministry of Health in New Zealand[[2]] formally adopted the World Health Organization’s goal to eliminate hepatitis C by 2030.[[3]] This goal is deemed achievable thanks to the introduction of new, well tolerated, pangenotypic direct-acting antiviral (DAA) treatments, which have at least 95% cure rates of hepatitis C.[[4]] In New Zealand, the main funded DAA treatment is Maviret® (glecaprevir/pibrentasvir). From previous data match work within the Northern Region of New Zealand (top of the North Island, estimated population of 1.9 million, 14% Māori[[5]]) it is estimated that there may be approximately 2,000 people who have hepatitis C but for whom a treatment record was not found.[[6]]
The historical and ongoing contemporary effects of colonisation have contributed to inequitable access to the determinants of health for Māori.[[7]] Colonisation also affects Māori access to other social systems in New Zealand with reduced access to education, employment, housing, and over-representation in the judicial and penal systems. These inequities all contribute to the fact Māori are more likely than non-Māori to use injectable drugs or be incarcerated,[[8]] two of the most common risk factors for hepatitis C transmission. Māori bear a disproportionate burden of hepatitis C infection compared with non-Māori,[[6]] and therefore, are at increased risk of liver failure and liver cancer.
Te Tiriti o Waitangi guarantees Māori the right to culturally safe mainstream health services and the option of kaupapa Māori health services.[[7]] To develop culturally safe services, Māori governance and partnership is required throughout the development process[[7,9]] which includes the inclusion of Māori with lived experience. Regional work is being undertaken to develop a centralised treatment service to identify, contact, and offer treatment to people previously diagnosed with hepatitis C but who remain untreated. Understanding patients’ experiences of healthcare services is important in evaluating current services, as well as improving future services and is central to a kaupapa Māori approach to service development.[[10]] This service evaluation aimed to explore the experiences of Māori in the Northern Region of New Zealand, who have received Maviret® treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation used semi-structured interviews to explore positive and negative aspects of hepatitis C treatment experiences, and to identify aspects of hepatitis C treatment that are important for developing a culturally safe service. District Health Board (DHB) research authorities provided approval (#2021-58; RM RM15005). The Consolidated Criteria for Reporting Qualitative Research (COREQ)[[11]] was used to structure service evaluation reporting.
Eligibility
Participants had to be Māori, 18 years or older, have received Maviret® treatment in the Northern Region since February 2019, have the capacity to consent and be able to undertake an interview for up to 30 minutes. Those unable to provide informed consent were excluded.
Recruitment
Pharmacies that had dispensed Maviret® to Māori patients were identified through dispensing data available to DHB analysts. The pharmacies with the highest number of Maviret® dispensing to Māori were invited by email to support recruitment for the interviews. Pharmacies were provided with a brief evaluation outline and asked to contact potential participants to gauge their interest in participation and seek permission to pass on details to the interviewers. Pharmacies were asked to recruit up to five participants each (purposive sampling) and documented the patients’ consent to pass on details. A pragmatic approach to sample size was utilised, based on resource and time constraints and it was intended to recruit 15–20 participants. A DHB hepatitis nurse specialist and a nurse from the Auckland Drug Information Outreach (Needle Exchange) were also approached and contacted potential participants using the same method as pharmacies.
Consent and data collection
Once provided with details, interviewers contacted potential participants via phone to provide further information about the service evaluation (purpose, process and how results would be used), ask for consent to participate and organise an interview time and method (i.e., phone, video conferencing or in-person). The interviews were conducted by engagement coordinators (female Māori [n=1], female Samoan [n=1]), experienced in strengths-based consumer engagement, who underwent semi-structured interview training (theory and role playing) prior to contacting participants. Participants could have support people present during their interviews and choose if they participated in English or te reo Māori. After consent was gained, interviewers had a general conversation with participants to establish rapport. A question guide (see supplementary material) supported the interview process which had been developed by the service evaluation team and piloted within the team. Interviewers were encouraged to use prompts when needed. Participants were offered the opportunity to receive a summary of findings at the end of the service evaluation and were provided with a $40 supermarket voucher. Repeat interviews were not conducted but each participant was contacted at least two weeks after their interview to check they had received the voucher and whether they had anything further they would like to add. Interviews were audio recorded and transcribed by a contracted transcriptionist. Transcripts were checked for correctness by the interviewers.
Data analysis
Transcripts were read for familiarisation and then coded in NVivo qualitative data analysis software (QSR International Pty Ltd. Version 12, 2018A) with codes then grouped to generate themes by the lead author, a Māori pharmacist and researcher with experience in qualitative and Māori research methods.[[12]] Initial codes and themes were reviewed by the service evaluation team in the context of data from interview transcripts before themes were finalised. A general inductive approach was used to analyse data, with privileging of participant voices and contextualising findings within social, historical, political and cultural contexts for Māori, as aligned with Māori methodological research practices.[[12]] Participant quotes are inserted verbatim and are identified by participant number. No further demographic detail is linked to individual participants to support the maintenance of anonymity.
Results
All twelve participants were Māori and were interviewed between August 2021 and January 2022. The median age of participants was 52.5 years (34–64 years), 67% were male (n=8), and mean interview time was 14 minutes (6–27 minutes). Length of time between diagnosis and treatment ranged from one month to 20 years, with half of participants being treated within 12 months of diagnosis. All participated in English via telephone. Two participants did not have access to telephones and instead a time was arranged with the recruiting pharmacy, interviewer and participant to undertake interviews in a private space at the pharmacy, using the pharmacy phone. The full recruitment pathway is shown in Figure 1.
View Figure 1.
Experiences of DAA treatment for hepatitis C
This section discusses the experiences of participants along their hepatitis C treatment journey. In general, participants talked of very positive experiences, usually in the context of being cured, and discussed that the process was generally simple and straight forward. The proactiveness of health professionals was valued. Some participants also talked about their own proactiveness in getting tested for hepatitis C, and in seeking solutions that worked for them.
Physical and mental impacts of hepatitis C diagnosis and treatment
Hepatitis C impacted on the physical health of some participants making them feel lethargic and generally unwell, and they reported the positive difference in their physical health when they received treatment. Many discussed that it was not until they were treated for hepatitis C that they realised how unwell they had felt.
“You feel the difference, you go from being tired, lethargic…” P1
“You don’t realise [until] you get rid of it as [to] how much it has affected you in the past” P12
Receiving a diagnosis of hepatitis C impacted on participants’ mental health. Various reasons for this included the potential impact on family if they became unwell and could no longer support others, the risk of passing on the infection, and not knowing whether hepatitis C was curable. Part of the burden was related to the perceived stigma with the diagnosis of hepatitis C, and to risk behaviours commonly associated with disease transmission.
“And I was embarrassed to tell anyone, that was a bit traumatic for me, I thought, oh, oh my God” P2
The reasons for starting treatment were varied, and included: not wanting to have the disease; wanting to be there to support family; wanting to improve acute and chronic health and prognosis; and wanting it to be the right time in their life, and with not so many competing priorities. Two participants also discussed that they had not wanted treatment during periods where they were actively injecting drugs, as they had less regard for the consequences of hepatitis C at that time. Starting treatment reduced the mental burden and this was further eased when positive treatment results, the fact that hepatitis C had been cured, were received.
“Once I started the medication it put my mind at ease.” P12
“Yes, it relaxed me so much mentally, that I’m able to sort of not… I don’t have to care anymore it's great.” P1
The importance of proactivity in the treatment pathway
Proactivity by all those involved in the hepatitis C treatment pathway seen as important to participants. Some participants discussed that support from others, including family and health professionals, to get tested and/or treated influenced their likelihood of doing so.
Interviewer: “Was there anyone in particular who made you think of getting treated?”
P9: “Ummm, well my daughter, yeah my daughter was with me for that…Yeah and we agreed that I should have the treatment.”
Proactivity by the treating health professionals and related service was valued. The ideal situation for participants was when health professionals provided information and follow-up, without prompting. This was important at all stages of the treatment pathway from initial testing, to conveying diagnosis, starting treatment, and receiving dispensed medicines right through to communication of treatment effectiveness. Many participants found benefit to having this proactive approach maintained throughout the treatment pathway and follow-up period and reported negative experience when this did not occur.
“[The doctor] rung me twice before I started it, just to make sure he asked me a few questions and he said it was typical of Hep C. Ah, but he said curable and the nurse was more than helpful, everybody has been good with it. The service, I can’t knock it one little bit…Even, even like at the chemist when I missed [picking up the tablets] they were ringing me” P12
The benefits of proactivity by health professionals were supported when health professionals were perceived as “knowledge experts”, and when a good relationship had been developed. Good relationships were not always those that had developed over time, and sometimes rapport could be developed over a short time, again supported by perceived expertise in subject matter and approach.
Touch points through the treatment journey, including telephone calls, were perceived as moments which showed they were cared about, and several participants commented that phone calls from prescribers or the pharmacy which dispensed their medicines would have been appreciated.
“I thought the whole thing was quite positive. Because everyone was trying to get me better.” P9
Participants were asked about their preferences for a wrap-around service, such as provision of support services, and many felt they had not needed extra support. Those that felt it would be useful had not asked for any extra services but expressed that they may have accessed extra support if it had been offered. In the absence of support services, many participants expressed the ability to proactively self-advocate.
“Well, that’s, that’s the part they could fix better they could have people actually ring you... if I hadn’t had gone in myself nothing would’ve been done… it just wouldn't have been done, it wouldn’t have even been screened… Again, it took for me to go in and see my doctor and for me to actually ask my doctor specifically for me to actually get told that, that it was no longer coming up as positive in my blood tests. Basically, there was no contact there was no ‘hey are you alright?’, ‘hey have you had any side effects?’ there's no none of that there's just go home and take the tablets and basically don’t hear anything back unless you go in and chase it up.” P1
“I was like saying to them well hang on... the doctor said I was having this with food and I read it in the brochure thing too you know. You don’t need to have it with food, but I suppose it just it works better I don’t know the story is behind it but… and, yeah” P5
Despite the clear articulation of self-advocacy by many participants, when participants were asked specifically about whether they had felt in control during their treatment journey, participants were often unsure how to answer this. The most direct responses came from those who had been treated in prison, one who said, “I went to jail, and they put you on it” (P3). This participant went on to discuss that they did not receive medicines at the correct times from prison staff, which affected adherence when they tried to exert control over the situation.
“So, I refused [the Maviret®] till they started playing my game” P3
In addition to how participants found it difficult to answer direct questions regarding their feeling of control within the treatment process, when participants were asked how the service could better support the needs of Māori, there was limited response to this question, although participants’ focus was generally on supportive care.
Accessibility of treatment-related care
Treatment accessibility was regarded as important by participants, many of whom discussed that the prescriber and dispensing pharmacy needed to be conveniently located. The hepatitis C treatment pathway was generally regarded as simple and straightforward by most.
“Well [the treatment process] was pretty straightforward. It was so easy, it was ridiculous.” P10
“As far as pharmacies go, it's just a pharmacy, you know. I… I only go there because it's my local and it was just handy that they happen to be one of the places where you could get the medication sent to.” P1
A range of barriers to treatment access were discussed. Several participants commented on complexities moving between dispensing pharmacies with extra steps having to be undertaken. Many participants found the large tablets difficult to swallow, which felt like a daily barrier to access, some psyching themselves up each day to take them, although none reported that they stopped taking it for this reason.
“They were bloody huge; they were horse tablets…You’d have to sit there for half an hour and try and get that one down before you could take the next one.” P1
Some perceived that the focus of initial discussions were on how they had got hepatitis C rather than the treatment.
“The answers just weren’t there and there was… and they’d say where did I get it from, blah, blah, blah, and not even I knew that.…” P6
Many participants talked about the difficulty of incorporating regular medicine-taking into their daily routine, and how they developed mechanisms and routines to support adherence.
“It was a bit annoying, I set me alarm clock to 6 o’clock everyday so that if I - otherwise I would of forgotten - so every time the alarm clock went off I knew what it was for. So, I took my pills you know… The 1st week was the tricky, I nearly forget once. After the first couple of weeks, it just becomes like everyday things. I just remember the moment my alarm goes off within an hour I make sure I take it… if I wasn’t home and the alarm went off, I make sure I took them when I walk in the door. Now and again, I would take a pack of 3 with me.” P12
This quote provides an example of how perceived barriers prior to treatment, or actual barriers early in care, could be overcome by participants during the course of DAA treatment.
Words of wisdom
Participants were asked to suggest approaches that they felt would support the treatment journey for others. They were also asked specifically what their “words of wisdom” were to those who were hepatitis C positive but had yet to begin their treatment journey. The support of treatment was overwhelming, with all participants encouraging others to have treatment.
“I’d just say go for it grab it with both hands, it’s awesome” P10
“Even though I was embarrassed of [the diagnosis] in the beginning, do you know what I mean, and it seems like a process but when I spoke and I said, ‘can this kill you?’ And they said, ‘yes it can’... So, once you know… it’s a very simple process to get rid of it.” P2
Participants discussed that the new treatment options, and the fact that hepatitis C is curable, need to be better communicated, and several discussed the value of these messages being delivered by those with lived experience of hepatitis C and its treatment. Four participants had received earlier types of hepatitis C treatment (e.g., interferon and ribavirin) and all discussed the contrast between older treatments and Maviret®. Other treatment courses were longer with challenging adverse effect profiles, whereas the participants in this evaluation reported either very mild effects like minor tiredness and nausea, or no adverse effects at all, which provided further drive to support treatment with Maviret®. Some participants also discussed that it felt like they would need to commit to a long course of therapy but, the treatment period went by very quickly.
“[Initially the treatment period] it just felt like forever; at this point weeks have just flown past me.” P5
As discussed above, the improvement in health was seen as something that could motivate people to be treated with one participant expressing that this alone should be enough incentive to undertake treatment.
“You know, my incentive was having my health back. And that’s, that’s all I needed… Who doesn’t think their health is important enough already?” P1
“At first, I was a bit sceptical, um once it started to work how can anyone be sceptical. Now it’s gone so that’s the biggest gift to me, that it’s gone.” P12
Discussion
This is the first known evaluation to explore Māori experiences of DAA hepatitis C treatment. This evaluation highlighted the physical and mental impact hepatitis C diagnosis can have, and that treatment with Maviret® leads to improvement in these domains, and proactivity by health professionals throughout the treatment journey was valued and that participants had the ability to self-advocate when needs were not met by other services. The rich qualitative data enabled the identification of various themes consistently, and the resultant recommendations (Box 1) are able to be incorporated into future hepatitis C treatment services in New Zealand.
Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey. Far from being reproachful that they might be being “nagged” or “hounded” by health services, they embraced the contact, and some were in fact suggesting there should be more of this. Those with hepatitis C who disengage from health services are often hard to reach by phone and may lack transportation.[[13]] Healthcare providers need to have various persistent strategies to find, contact and engage with these patients in order to address individual and structural barriers to engaging with hepatitis C related healthcare, the effectiveness of which could be supported by robust information technology solutions. Our evaluation showed the value of having responsive patient–provider relationship as well as convenient locations of treatment sites enhancing access hepatitis C treatment.
New Zealand academic literature shows that hepatitis C treatment reduces disease burden,[[14]] and that DAA treatment is safe and efficacious.[[15]] However, the value of treating hepatitis C seemed to be a revelation for most participants in this evaluation. This signals that greater communication and awareness building needs to be undertaken amongst Māori at risk from hepatitis C (and their whānau) to ensure the availability of free access to curative treatment is known. Whilst studies have shown that comprehensive hepatitis C knowledge motivates screening by primary care providers,[[16]] there is a paucity of such data from a “patient’s viewpoint” and none that is specifically applicable for Māori in New Zealand. There is poor knowledge of hepatitis C and its treatment among the public and health professionals[[17,18]] and this evaluation further highlights that more activities are needed to socialise this, including utilising those with lived experiences to share their stories.
Stigma associated with a hepatitis C diagnosis, identified in this evaluation, may be another barrier for accessing curative treatment. Previous research identified that this stigma presents as fear of contracting a contagious, chronic illness, assumptions regarding “socially unacceptable” behaviours relating to hepatitis C infection, as well as societal attitudes towards traditionally marginalised populations.[[19]] The authors of this work postulate that these manifestations negatively affect people’s perception of being “deserving” of treatment[[19]] which, for Māori, could be further compounded by experiences of institutional and internalised racism. Managing risk relating to potential exposure mechanisms is important to reduce the potential for re-infection during or post-treatment; however, there is the potential that these discussions at the point of diagnosis may affect both patient–provider relationships and a person’s willingness to accept treatment. It is important to note that people who continue to inject drugs are eligible to receive treatment in New Zealand. DAA treatment for hepatitis C is as effective in those who inject drugs as those who do not;[[20]] and treatment offers benefit at the individual, whānau, and population level.
Adherence to DAA therapy is important for treatment success with those with lower adherence less likely to have a sustained virological response (i.e., be cured) post treatment.[[21]] Participants in the current evaluation discussed the importance of incorporating DAA tablet taking into their daily routine to help with taking the medicine as prescribed. Setting up daily electronic reminders were also useful and health professionals could have a role in supporting this. The delivery of supportive care and education by clinicians using telehealth has also been shown to improve adherence with hepatitis C treatment compared to “usual care”.[[22]] Previous research has shown that those most likely to benefit from increased adherence support are those that experience multiple marginalisation (for example ethnic marginalisation and incarceration),[[23]] which speaks to the need to address service and structural issues as well as medicines adherence to best increase the likelihood of treatment success.
The positive impact of treatment on physical and mental health is supported by New Zealand and Australian research where patients self-reported significant, positive impacts on their lives post curative hepatitis C treatment, particularly in alleviating anxiety and a fear of infecting others.[[14,24]] In people that are hepatitis C positive and who inject drugs, hepatitis C cure may be just one aspect of change that people are seeking in their lives, within the context of a more holistic approach to their wellbeing. Other changes may include improving social relationships and personal identity, improving mental health, and managing future risk.[[25]] It is therefore important that these benefits are proactively communicated to promote uptake of treatment, and that the health service providing care incorporates wraparound services to ensure the wider concept of wellbeing is managed. This approach is in line with a Whānau Ora approach where outcomes beyond individual, physical benefits, are articulated and valued.[[26]]
The right for Māori to have care options, including culturally safe mainstream services and kaupapa Māori services, as well as the right for Māori to be involved in all levels of health service development are set out in Te Tiriti o Waitangi.[[7]] None of the participants gave examples of services that upheld kaupapa Māori practices or principles of care and, similar to when asked about levels of control in the treatment journey, participants did not articulate how services can better support Māori specifically. There is the potential that those that are marginalised, and unaccustomed to having power in the health care setting,[[27]] may be less likely to identify control and self-determined care as important, and care needs to be taken in the methods to strengthen participants’ ability to contribute.[[28]] Despite this, participants offered many ideas for positive improvement to services and therefore this evaluation is even more important as it both presents their voices and seeks to incorporate this into future care options.
Further research is recommended to include those at risk of hepatitis C but not tested, or who have been diagnosed but not treated, to understand the barriers to diagnosis and treatment.
Strengths and limitations
This is the first known evaluation that focuses on Māori experiences of DAA treatment, and it provides up-to-date insight given all received treatment within the last three years. Care was taken to privilege the voice of participants in this evaluation. Some interviews were short, limiting the richness of the data. There is potential that responses could have been further contextualised in longer interviews and with more follow-up questions; however, length was driven by participants, and interviewers had been guided to allow for this to ensure the interview process was not regarded negatively by participants rather than necessarily pushing for expansion of responses. Reasons for short interviews, postulated by the research team, included communication style (brief participant responses that were not expanded on during prompting); interviewer experience (very experienced interviewers may have been able to elicit extended responses while maintain good rapport); and interviewers fitting in with participant schedules (some participants contacted researchers during short work breaks to participate and were not open to moving the times). Reluctance to be interviewed did not appear to be an issue. In-person interviews may have increased the ability to build rapport and the extent of data provided although restrictions relating to COVID-19 impacted on this approach. In contrast, perceived anonymity over the phone may have increased disclosure. Those that volunteered to be involved in this research may be more likely to feel able to self-advocate and, therefore, this theme may not come through as strongly in a different cohort. Additionally, all participants had positive treatment outcomes and there is the potential that participants with variable or negative treatment outcomes may have told more critical stories of service provision. The number of participants was lower than the target due to recruitment difficulties impacted both by the COVID-19 pandemic and lack of up-to-date contact details for potential participants. This evaluation involved 12 participants in the Northern Region of New Zealand, and it is not intended that it be representative of, or generalisable to, all Māori experiences of hepatitis C treatment. Findings will be used to enhance the development of new hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Summary
Abstract
Aim
Hepatitis C, and its associated life-limiting sequalae, disproportionately affect Māori. Despite availability of fully funded effective and well-tolerated oral direct-acting anti-viral agents (DAA), many in New Zealand remain untreated. This service evaluation aimed to explore the experiences of Māori who have received DAA treatment for hepatitis C, and their ideas for service improvement.
Method
This qualitative service evaluation recruited eligible participants (Māori, 18 years+, DAA treatment since February 2019) through health care providers. Semi-structured interviews were undertaken over the telephone with consenting participants. General inductive analysis was used to generate themes contextualising findings within cultural contexts for Māori, as aligned with Māori methodological research practices.
Results
Twelve participants were interviewed. The physical and mental impact hepatitis C can have, and that treatment with DAA leads to improvement in these domains, were highlighted. Proactivity by health professionals was valued, including the benefit of wrap-around services to keep people connected throughout the treatment journey, with participants articulating the ability to self-advocate when needs were not met by other services.
Conclusion
Findings can be used to enhance the development of further hepatitis C treatment services, based on Māori experiences of treatment and self-identified solutions for improvement in hepatitis C care.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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A service evaluation to explore Māori experiences of direct-acting antiviral hepatitis C treatment in Aotearoa New Zealand
The historical and ongoing contemporary effects of colonisation have contributed to inequitable access to the determinants of health for Māori. Colonisation also affects Māori access to other social systems in New Zealand with reduced access to education, employment, housing, and over-representation in the judicial and penal systems. These inequities all contribute to the fact Māori are more likely than non-Māori to use injectable drugs or be incarcerated, two of the most common risk factors for hepatitis C transmission.
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