This guide to peer support for hepatitis C (HCV) testing and treatment provides an overview of how peer support works, and how you can implement it in your service setting. We’ll give you some practical tools, tips, and resources and provide insights into the barriers you may face and how you might be able to overcome these barriers.
The authors and reviewers of this guide include people with living experience of drug use or viral hepatitis, healthcare practitioners, researchers, laboratory scientists, policy makers and other service providers globally. This guide is part of our Intervention Toolkit which profiles innovative models of HCV care and offers guidance on how to set up different interventions for HCV in your service.
This guide is intended to be broad use and applicable across different service settings and geographical regions, as well as different social and cultural settings; the term peer support has therefore been employed for descriptive purposes. However, it is important to note that the terms ‘peer worker’, ‘peer support worker’ and ‘peer specialist’ are not the only terms used to refer to peer workers in community settings. Other terms may include interns, paid apprentices, or referring to the workers by their roles – outreach workers, harm reduction workers, community support workers, etc. (Toronto Community Hep C Program Peer Manual– See our Resource Section).
This guide is specific to peer support work, one the many types of roles that people with lived and living experience can hold in HCV programs. For the purpose of this guide, we are referring to funded HCV peer support programs, acknowledging that there are other volunteer or unpaid networks of peers who may provide support around HCV prevention and treatment and other issues.
It is important to recognise how experiences of stigma and prejudice in the workplace can arise from the association between the term ‘peer work’ and current or previous drug use. Consideration of different options when it comes to language use should be made, taking into account the context of the self-disclosure, when setting up peer support programs in your service setting.
A peer support worker is a person engaged based on their unique expertise and knowledge from their lived experiences for the benefit of other people in similar situations. Peer support workers are often also people who use drugs and can share their experiences of HCV in the context of their injecting drug use to support people who are considering testing or treatment.
Peer support draws on shared experience to build trust and emotional safety and diminish barriers to care. Peer support is integral to the HCV public health response given that information disseminated by peers is more likely to be taken up by people who use drugs, comparative to mainstream health professionals.
There is no “one-size fits all” approach to peer support around the world, some examples may include:
- Support groups run by trained peer workers
- One-to-one support or mentoring
- Online discussion forums
- Advocacy and activism
- Knowledge and skills transfer
To effectively engage with marginalised communities, peer support workers with lived and living experience of drug use or viral hepatitis should be meaningfully involved in the design, delivery and implementation of HCV testing and treatment programmes. There are different ways of understanding lived experience, which may include direct experience with HCV infection or treatment, accessing HCV testing, and/or experiences of being at risk of HCV such as injection drug use.
People who use drugs are often an underserved population when it comes to HCV testing and treatment. Due to the criminalisation of drug use in most countries, and subsequent stigma and discrimination associated with drug use, people who use drugs often experience marginalisation and isolation from the health system and broader society. Feelings such as being unwelcome or being judged when accessing health services can lead to distrust or reluctance to disclose information related to drug use or other health issues a person may be experiencing.
Peer support can be an effective intervention to reach ‘hidden populations’ and those who are hard to reach, and promote learning and sharing among those who may be hesitant to engage with other models of service provision (AIVL, 2010). Peer support workers can have a greater ability to fully appreciate the challenges people are experiencing and therefore avoid making impractical suggestions about possible solutions (Aitken, C. 2022). This can bring a credibility and a legitimacy that is ‘experience based’, building effective communication and rapport, as clients may feel more comfortable to talk to or confide in those who have had similar experiences.
Furthermore, peer support workers may assist in breaking down medical jargon to support others to make informed decisions about their health and clinical services available. Peers complement and enhance other health care services by assisting a person with their emotional, social and practical needs for managing a disease and staying healthy.
People with lived and living experience who are undertaking peer support work can enhance HCV models of care when they are involved in:
- Sharing information about HCV testing and treatment with service users
- Supporting people who are going through testing and treatment
- Linking and/or referring people to HCV testing and treatment services, and other types of services that can support and enhance health such as harm reduction programs and social supports including housing and income assistance.
To integrate peer support into your service you will need to think about how you define peers and lived/living experience, how to employ and train people, how to compensate them for their time, how to support them to succeed in their role, and how you will define their role. In the first instance, consideration should be given to existing peer support organisations that can support development and delivery of your HCV peer support programs.
There are many benefits of peer support and ways in which it helps mitigate and overcome the barriers people may face to accessing care. Some of the benefits to engaging service users and peer support workers in the design, delivery and evaluation of your shared model of care include:
- Creating trust in the service and the information they are sharing, encouraging people to engage in HCV care
- Using their shared experience to answer questions that service users might have that relate to a specific set of social circumstances and contexts
- People feel safer and more comfortable discussing their concerns and challenges, because they know they are talking to someone who has similar shared experiences
- Helping to identify people previously engaged in harm reduction programmes or who were on HCV treatment who have since dropped off
- The service gains a greater knowledge of barriers to HCV testing and treatment in specific communities, making it easier for them to remove those barriers and design community-centred approaches.
- Investing in skills training and creating meaningful employment opportunities for people with lived and living experience that benefits everyone
- Increasing the reach and credibility of the service in the community as well as improving accessibility and acceptability
How to set up peer support in your service
Evidence: Write a list of reasons why they should support this initiative – identify the benefits.
Key Stakeholders: Identify people in your organisation who need to agree to adopt a peer support program. Peers should be involved at every stage of development – it is important to determine from the outset how you will include people with lived or living experience of drug use or viral hepatitis, and peer work experience in planning the program.
Commitment: Developing a new peer engagement initiative requires time, patience and your dedicated attention (Toronto Community Hep C Program Peer Manual). Having the ability and resources to support and work alongside peers is imperative to ensuring positive and sustainable engagement. Engagement should always occur as early as possible in the process to enable meaningful involvement.
Budget: Put together a budget to show how much it will cost, including training and rostering time. Consider any application industrial terms such as salaries or instruments like awards or enterprise bargaining agreements (EBAs).
Infrastructure: Identify whether there is anything additional you need, including space for peer support workers to talk to service users.
Highlight positive experiences: Can you create a narrative of positive experiences from people who have benefited from talking with a peer support worker, or services that have improved their offering?
Risk management plan: Put together a plan to manage risk and deal with any set-backs or challenges you may face, addressing how these might be overcome. Risk management should consider all parties, risks to staff as well as the risk to the service.
Employment considerations: Services should be adaptable and open to finding ‘the balance between rights and responsibilities, and to created working cultures that are both supportive and demanding’ of those who work within them (International HIV/AIDS Alliance, 2015). Managing complexity is an important part of the development of peer support programs, and should be shaped by harm reduction and human rights principles.
In the service or outreach? In a service, peer support workers often spend their time talking to people in the waiting room, answering questions and sharing information. Peer support workers may facilitate referrals or linkage to other services, lead treatment support groups, or in some contexts offering or conducting point-of-care or dried blood spot (DBS) testing. As an outreach service, a peer support worker might be in community and connecting with people about harm reduction and HCV education, or might join a nurse offering treatment. In this model, the peer support worker can add great value in talking to people, answering their questions, and sharing information and experiences.
Resources for peer support workers: Consider what peer support workers will need to do their job well. Infographics, flyers, brochures and posters may be helpful when they are talking to people who are considering HCV testing or treatment. Other resources such as online learning, training programs, podcasts and newsletters are also available for support and guidance.
Think big: With peer support workers on staff, you’re likely to uncover plenty of new ways to improve your offering to service users. Give your peer support workers a seat at the table and make space for them to influence the way you do things.
How will you compensate your peer support workers for their time? Peer support workers should always be compensated fairly for their time and effort. Different centres have used different models of payment, so take a look at the Resources section for a range of suggestions.
Some peer programs have full time permanent peer worker positions that are salaried and include a full benefits package. Other programs may offer hourly rates to peer support workers. Some programs may offer honoraria, stipends or vouchers. It is important for compensation to be provided in a manner that is free from stigma. Some peers may find that food vouchers are stigmatising due to the inference that they can not be trusted with cash or that there is an assumption around what they would spend it on.
Conversely, some peer workers prefer honoraria/vouchers as they are working part time or casual hours, and direct compensation may create challenges for accessing any social assistance payments. Training and qualifications may also be part of the package. Recognition for their time and efforts must be grounded in non-stigmatising and non-discriminatory models of compensation and determined taking into account individual circumstances.
Support their circumstances: Be aware of your peer support workers’ needs when they come to work – whether that’s additional support with childcare or financial support for transport to and from work. Support strategies should sit within a wider framework of staff welfare and human resources policies, designed to support all staff.
Consider their experience in mainstream work environments: Some peer support workers will have plenty of experience in workplaces and some will have very little. Even transitioning from volunteer expectations to worker expectations can be a step into the unknown. Where possible train up another peer worker to undertake induction and buddy up with new peer workers. They can offer support in things many take for granted such as applying for leave, tax, email usage as a work tool, working in small teams, establishing personal and professional boundaries and so on. A healthy work-life balance amongst staff should be encouraged and supported, time management and goal setting training may be useful to prevent burnout. Where possible involve peer organisations to provide support interventions.
Supervision and Support: Offer external supervision if possible and be clear about what this is for. Support should be made available in different forms and cover multiple aspects guided by an individual’s needs. Consider the different options of financial support and compensation, and peer support worker preferences. It is important to be cognisant of intersectionality and how peer workers might experience added stigma through their belonging to multiple marginalized communities. Peer workers might identify as non-binary or gender non-conforming (gender and sexual minorities) and face compounded stigma as a result.
Training and development plans and reviews: Staff who were recruited from volunteer based programs may have limited professional experience, and may require training and guidance on working in office settings or with administrative systems. Training and professional development opportunities should be made available from induction as well as performance reviews in line with workplace policies for all staff. Specific issues or indicators relating to peer work can be added to promote a culture of support.
Positive Recruitment: All peer support workers should have fair opportunities to progress through the organisation or service. Services should work with their peer support workers to overcome any structural barriers they may face and support preparation for interviews and documentation of any learning and professional development which may have been undertaken.
Create a transparent process for paying peers: Some considerations may include:
- How much will your peer workers be paid, and how does this compare to others?
- How often will your peer workers be paid (i.e. weekly, monthly, lump sum)?
- Will peer workers be expected to pay for anything out of pocket? If so, when will they be reimbursed, and how?
- How is travel time paid for?
- Will telephone expenses be paid for?
Rostering: Decide how you will approach rostering and work hours for your peer support workers, and what happens if someone calls in sick on the day. Be careful not to place too high expectations on peers, they may be willing to please, unable to say no and unused to workplace expectations. It is important to be careful to avoid over commitment and burn-out.
Policies: Consider whether you will need to update any existing policies within your service to include peer support workers. It is important to have consistent policies that apply to all workers- not just peer workers – and that the focus be on performance and not substance use. Non-peer services and organisations may find it useful to consult with peer organisations or services that have successful peer programs.
Guidelines: Consider consulting with the peer workforce on the establishment of clear program boundaries and advice related to illicit drug use and interaction with community. These can be challenging situations for peer workers who are employed to engage with their community and the focus here should be on making it simple for peer workers to make decisions in these situations.
Induction: Consider whether you will need an instruction manual for peer support workers to support their induction. Induction training offers an opportunity from the outset to establish the values of an organisation and supports new staff in understanding the organisations expectations as well as that their participation is valued in a meaningful capacity. Induction training for all staff should include (but not be limited to) first aid training, overdose management, universal precautions, emergency protocols and incident reporting, as well as access to first aid kits and safe disposal boxes for used injecting equipment. Induction should also cover policy on drug use in the workplace, rights in the workplace and the importance of operation policy and standard operating procedures (International HIV/AIDS Alliance, 2015).
Code of Conduct: These define the principles, values, standards and expected behaviour of all staff. For people who use drugs, a code of conduct can provide appropriate guidance and set clear standards around drug use and intoxication at work, although the focus of this set of rules should be broader than drug use.
Work Health and Safety (WHS): Are there any impacts on an organisation’s WHS or other insurances that need to be considered? If policies are clear, there should not be any impact.
Define the role: Write a clear role description for peer support workers, so they and the rest of the team have clear expectations of what the peer support worker will and will not do as part of their job. This should be evaluated and updated regularly.
Finding people: You may know some likely candidates that you’ve engaged with before, but it’s also a good idea to recruit more widely. Word of mouth and flyers can help you reach more possible candidates.
Consult with your organisation and wider stakeholders: Your team will be used to offering care to service users – but how will they respond when they are on the same team as people who are former or current service users? Make sure your team is informed early about the plan to employ peer support workers and take the time to answer questions and respond to issues they may have. It is essential to work through any concerns or issues in advance of implementation so that the workplace environment is supportive and welcoming for peer workers. Fundamentally, organisational stigma must be addressed, ensuring that the goals of the organisation as a whole are in line with the program objectives, and the organisation is ready and well placed to develop the program.
Acknowledge the issues: Most peer support workers are likely to be people who use or have used drugs, so you need to think about their unique circumstances. Do they have other challenges that need to be accommodated as part of their work (e.g. housing, health issues)? What kind of work experience do they have? If they have limited employment experience, find ways to help them navigate common expectations that come with your first job – working hours, requesting time off or taking sick days, methods of communication with team members, logging work time (if needed), etc. A solid induction plan should be in place to support new peer support workers.
Proactively manage people and culture: Employing peer support workers may bring new team dynamics to your service, and even positive changes come with challenges. Be attentive to team dynamics and the culture of your service and address issues early and directly.
How will you train your peer support workers? Training for peer support workers needs to include principles of harm reduction, policies and processes in your service, knowledge about HCV and the testing and treatment processes, and when to refer or engage with medical staff. Along with this will be training on boundaries and confidentiality. Other services have developed comprehensive training content that could provide a starting point.
How will you train your other team members? Your other team members also need comprehensive training on what the peer support worker will do, the benefits of involving peer support workers, how they can best support their peer support workers, and how the skills and experience of peer support workers can benefit their service users.
Review regularly: Whenever you have staff turnover, make sure you run training again – not just for peers, but also for other workers in your service, giving consideration to the dynamics of your centre. They will likely benefit from an introduction to the peer support model, benefits of it and an open discussion about any pre-existing views on peer support
Evaluation plan: Plan how you will evaluate the uptake and effectiveness of the intervention. How will you know if the intervention has been useful? Using an implementation theory, model or framework can help guide the process of translating research into practice, understanding and/or explaining what influences implementation outcomes and evaluating implementation.
Collaborate with your peer support workers to find solutions. Be clear about what you expect from all your workers as far as job performance, showing up, and communicating about absences. Have an open, honest conversation and let your employees suggest how you and they can overcome obstacles and manage triggers. Experienced peer support workers should conduct this conversation if possible. Consider what supports you can offer. Peer workers and supervisors together should have these conversations to enable sharing of experiences.
Remember – your peer workers are bringing experience to your team that cannot be gained in formal education.
Be aware of different levels of literacy and have a plan to address any learning needs.
Train and support your peer workers on expected behaviour at work – these sorts of issues can have a big impact on team dynamics. Train peer workers on any technologies they are expected to use. Recognise that there may be varying levels of experience with different technologies.
It is important to acknowledge the unique challenges that incorporating peer workers may present and discuss specific concerns with your organisation. Places who have successfully incorporated peers into their workforce have had to make considerations as to how to overcome these challenges, including:
- Finding a name and classification for the role that will fit within salary grids and organisational structure
- Obtaining appropriate documentation such as police checks and where exemptions might be permitted to required documentation
- Finding methods of payment in instances where peer workers may not have access to a bank account or where income will affect income or rent support.
- Supporting new peer workers throughout expectation setting and communication requirements.
Demonstrate to your service the benefits of peer support and highlight other successful models of care around the globe, where administrative, human resource or financial challenges have been carefully considered, and measures put in place to overcome.
It is important to avoid this and support peers to advance in their positions/within programs as appropriate. Where possible engage peer organisations to train, mentor and support new peer workers to understand and manage these expectations.
Where possible engage more than one peer worker and seek to engage peer workers with diversity. Ensure that there are pathways into positions of greater responsibility. This allows for personal and career growth as well as freeing up entry-level peer positions for other community members. If there are limited opportunities for advancement consider both how to grow the program and how to support your peer workers into other roles in the organisation.
Peers should be given agency and autonomy over decision-making.
Clear communication and transparency are essential to setting healthy boundaries. The boundaries between peer support workers – employees who used or use drugs and the service users of a harm reduction program can become blurred, sometimes resulting in barriers to effective work.
Organisations should discuss issues around boundaries with peer support workers at the onset of employment. Multiple forms of support should be provided on how to navigate often complex situations where peer workers are expected to interact with their community albeit now from a new position which is associated with its own set of power dynamics.
- From principle to practice: What does the literature tell us about the engagement of people who use drugs in harm reduction programming?
- Practice guidelines in peer health navigation for people living with HIV
- Toronto Community Hep C Program Peer Manual
- Harm Reduction at Work
- Peer engagement principles and best practices
- Issues impacting people with lived/living expertise of drug use working in harm reduction
- Leave no one behind: Engaging and empowering people in HCV care and treatment through peer support
- PEER WORKFORCE CAPACITY BUILDING TRAINING FRAMEWORK – Australian Injecting & Illicit Drug Users League
- Good practice guide for employing people who use drugs – the International HIV/AIDS Alliance
Do I need policies about drug use in the workplace?
All employers expect their employees to abide by local and national laws. Policies do not need to call out peer workers or illicit drug use specifically. Good support and supervision processes to support peer workers and to ensure they understand expectations is important and can prevent issues arising. Policies should apply to the entire workforce and be evenly applied.
The focus should be on capacity to perform tasks. Supportive approaches to managing medications or out of work challenges are more likely to have a positive impact than punitive policy- based responses.
How should I handle criminal record checks?
It is important to acknowledge that countries and often provinces/states will have different laws and procedures around criminal sanctions. Potential employees should be assessed on a case-by-case basis and a risk assessment undertaken. A risk assessment development framework can be found in the Good Practice Guide for Employing People Who Use Drugs, in our Resource section. Previous convictions, particularly for non-violent drug-related offences, should not prevent a peer support worker from being considered for a position. Further, experiences of navigating the criminal justice system could be seen as an additional tool in the peer support workers’ skill-set. Experiences of the criminal justice system are part of a peers’ lived-experience and can be an asset when engaging with a client or service beneficiary who previously has been incarcerated.
What to do when there are breaches of confidentiality?
Breaches of confidentiality should be addressed uniformly across the organisation, regardless of whether a person is a peer support worker or identifies as a person who uses or has used drugs.
What is the duty of care when peers are enrolled in Opiate Substitution Therapy (OST) Programs?
OST clients bring an additional set of skills, connections and understanding to an organisation. OST is referred to by different names including opioid agonist therapy (OAT), medications for opioid use disorder etc. OST clients can help the organisation to understand the range of different models and medicines that can be used in opioid substitution therapy.
Depending on the type of programme that a person is on, they might be adhering to daily supervised dosing schedule that requires them to obtain their dose from a location every day. Alternatively, their dosing might require less frequent visits to a designated location or service, for example, with long acting injectable buprenorphine where weekly or monthly injections are required. Organisations employing peer support workers must be flexible and accommodate a person’s OST requirements. The sorts of provisions required by the peer and what the organization agrees upon should be clear and agreed upon at the start of employment. It is up to the peer to inform the organisation if changes are made to their programme. There will be differences between OST programme requirements for different individuals that can differ between countries and within countries.
Got a question?
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Top tips for implementing peer support in your service
Create a small working group inclusive of peers to help develop the project
Get management on board from the outset. Show examples of where it has worked elsewhere
Work out a budget and identify what other supports are needed (e.g. policy, management).
Training is critical – set up a comprehensive induction and run trainings regularly to support professional development.
Don’t neglect other staff – communicate, listen to their concerns, and resolve them.
Manage people and culture – be attentive to the team and power dynamics, and respond to issues early.
Stay in touch with organisations who can support and encourage you – organise monthly meetings, online or in person.
Write up your experience and share it with others.
|Role of peer support in a hepatitis C elimination programme||Jugnarain DV, et al.||2022||Read the paper|
|Peer outreach point-of-care testing as a bridge to hepatitis C care for people who inject drugs in Toronto, Canada||Broad J, et al.||2020||Read the paper|
|A Randomized Controlled Trial of Cash Incentives or Peer Support to Increase HCV Treatment for Persons With HIV Who Use Drugs: The CHAMPS Study||Ward K, et al.||2019||Read the paper|
|Improving engagement with healthcare in hepatitis C: a randomised controlled trial of a peer support intervention||Stagg H & Abubakar I, et al.||2019||Read the paper|
|A Randomized Controlled Trial of Cash Incentives or Peer Support to Increase HCV Treatment for Persons With HIV Who Use Drugs: The CHAMPS Study||Ward K, et al.||2019||Read the paper|
|From client to co-worker: a case study of the transition to peer work within a multi-disciplinary hepatitis c treatment team in Toronto, Canada||Tookey P, et al||2018||Read the paper|
|Hepatitis Service Provision at HMP Birmingham: Progressing a Previous Service Improvement Plan||Arif, T.||2018||Read the paper|
|‘Beyond the willing & the waiting’ – The role of peer-based approaches in hepatitis C diagnosis & treatment||Henderson C, et al.||2017||Read the paper|
|Deadly Liver Mob: opening the door – improving sexual health pathways for Aboriginal people in Western Sydney||Biggs K, et al.||2016||Read the paper|
|Peer support models for people with a history of injecting drug use undertaking assessment and treatment for hepatitis C virus infection||Crawford S & Bath N||2013||Read the paper|
|Making sense of implementation theories, models and frameworks||Nilsen, P||2015||Read the paper|
|A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project||Powell B, et al.||2015||Read the paper|
|Effective Practice and Organization of Care (EPOC)||Shepperd S, et al.||2015||Read the paper|