Chronic Illness Alliance - Peer Support Network

Best Practice Framework

4. Program Operations

You need to carefully consider how much control, and responsibility, you and your organisation want to take for the quality and nature of peer support provided within the program.

An example of a program that can leave a high degree of control with the peers themselves is online support. In setting up and running an online support program, you will be providing the electronic infrastructure that allows people to communicate. The group that uses the infrastructure you have created can be called an online community – with all the richness plus potential for rewards and risks that goes with any community interaction.

Other types of programs often take a higher degree of control and hence responsibility for the quality of the support provided. Peers notionally providing, rather than receiving, support are recruited, screened and trained (usually as volunteers). Interactions between the volunteers and the peers they support may be actively monitored in various ways. In this way of thinking about a peer support program, it is perhaps one of a range of services provided by a specialist organisation and hence it must comply with general disability service standards[vii]. Also, this way of thinking about peer support tends to differentiate strongly between those providing support – volunteers who must be trained and managed, and those being supported who may be called clients. There is a set of Australian national standards for managing volunteers that covers many of the general issues for setting up a volunteer-based program.[viii]

This large variation in types of peer support programs is another reason why it is important to define a clear statement of purpose early on in the life of the program as described in Section 1.

Program operations need to be managed, and the efforts of both volunteers and peers coordinated. For the purposes of this framework, we have defined all such activities as being undertaken by the program coordinator. In practice, depending on the size of the program, this may require one or more people to be involved. Tasks may be subdivided according to availability and skills.

4.1 Recruitment, Selection and Screening

The first stage in bringing the planned program to life is to recruit both volunteers and peers to be involved.

Recruitment strategies need to consider both volunteers and peers. The cheapest and most effective strategy to get a program started is often to use existing networks and to invite peers that you are already in contact with to spread the word about the program to their own networks. Other ways of getting in touch with new potential members of the program are:

• Referrals from clinicians – this can be especially important for newly diagnosed peers.
• Asking other related organisations to send notification through their networks – newsletters, online announcements etc.
• Creating an Internet presence – a web site – and ensuring that it is easy to find using relevant search criteria.
• Referrals from staff in other parts of your organisation.
• Asking and/or encouraging graduates of your program to return as volunteers.

It is a good idea to point out the incentives that you can provide for those who become involved such as:

• Opportunity to meet and socialise with others in a similar situation,
• Participation in other activities like conferences and meetings,
• And for those who play a leading role,
  • Job references or letters of recommendation (for those who develop specific skills as a result of their involvement), and /or
  • The opportunity to train others.

When recruiting volunteers it is very important that the volunteer is well adjusted to their illness and does not use their support role to further explore their own experience of loss or grief. It is equally important that they are able to listen using their own experience as an example of what could be done, not how it must be done. Using terms such as you should, you must or you have to, are disempowering and inappropriate.

There may also be risks in introducing peers to each other that you may need to manage. Consider whether your volunteers should be asked to undertake a police check. Also, the Victorian Government requires people (volunteers and employees) who are engaged in child-related work to have a Working With Children (WWC) Check. This legal requirement helps to protect children (under 18 years of age) from harm by checking a person’s criminal history for serious offences. There is no charge for volunteers to obtain a WWC Check. For further information, visit the web site of the Department of Justice[ix]. Similar requirements exist in other states.

Screening of applicants is important for those people who wish to become volunteers. Desirable qualities in volunteers are:

• Well-adjusted to their own condition i.e. have effective mechanisms of their own for coping with their condition,
• Accepting of individual differences,
• Committed to personal development (their own and others),
• Excellent communication skills,
• Desire to give back to the community (or organisation),
• Commitment to the goals and objectives of your organisation,
• Sufficient time to undertake training and then provide peer support, and
• Warmth, sensitivity and flexibility.

Apart from an idea of the personal qualities listed above, you will need some basic information from potential volunteers in order to ensure their suitability and to make the best match, for example:

• What is their availability to provide support (where and when)?
• What do they believe they will get as a result of providing support to others?
• Age, gender, cultural background including languages spoken, occupation.
• Mobility status.
• Experience with the condition (as relevant e.g. years since diagnosis, stage of condition).
• Any specific comments on the type of person they would (or would not) like to support?
• Referees.

Some of these factors may be specified as inclusion/exclusion criteria on participation, for example, you may decide to take volunteers who have a minimum of two or three years since diagnosis.

Volunteers may be referred to the program through networks, perhaps because of their existing involvement in your organisation. Despite this, it is best practice to ask them to complete a recruitment questionnaire asking questions such as those listed above and to conduct a basic interview to confirm their suitability for the program. This may be mildly embarrassing if there is an existing relationship, but it is better to confirm expectations on both sides at this early stage, rather than recruit someone in to a program that does not suit them.

Ensure that potential volunteers understand the time commitment that will be required from them. It is good practice to have a written agreement between your organisation and the volunteer. This helps to ensure that all obligations are clearly understood.

An important tool in recruitment for both you and potential volunteers is a formal position description.

4.2 Training and Development

It is very important that once you have selected people to join the program as volunteers, they receive appropriate induction to the organisation and training specific to the assignment. These people are the peers of those whom they are supporting, so in some ways it seems odd that they need training, but there are several issues that need to be considered. Be aware that volunteers will have a wide range of starting competencies and skills in areas relevant to providing peer support. All volunteers should be invited to see the training as an opportunity to explore their own attitudes to their condition, and the attitudes of family, friends and the general community.

In addition to covering the scope of the program itself and the role of the volunteer within the program, issues to be covered fall into four general areas:

• Providing peer support
• Volunteers should receive some basic training in how to communicate with peers in order to provide support whether this is one-on-one or facilitating a group discussion. Topics to cover include:
  • Opening a conversation with a new peer – introductions,
  • Sharing one’s own experience,
  • Active listening skills,
  • Group facilitation skills
  • Ending a session on a positive note,
  • Self-awareness,
  • Dealing with distressed or angry peers,
  • Dealing with grief and loss,
  • Understanding different values and culture,
  • Ethics and confidentiality.
• Boundaries of the peer relationship.
  Generally speaking, volunteers are not trained as counsellors and they should be well aware that they are not to provide medical advice or enter in to a counselling relationship with people they are supporting. The nature of the relationship is one of sharing stories and experiences – letting the peer know that they are not alone and that their problems are not unique.
  Volunteers should at all times be aware of their own needs and not put themselves in to situations that may be uncomfortable or unsafe for them in any way.
  It is always possible that the volunteer becomes aware of (or may be directly asked about) issues with which the peer needs professional assistance. This includes (but is not limited to) such issues as depression, suicidal thoughts or problems with carers. Volunteers should be trained in how to deal appropriately with such issues when they are raised, and who to contact to report serious potential problems. Volunteers should never provide any specific advice but should be aware of the resources to which peers can be referred.
• Support, mentoring and backup
  Another key aspect of volunteer training is to ensure that they know what support is available to them. The nature of the peer relationship is such that they will be exploring their own past experiences with chronic illness and, whilst they have volunteered to do this, some people will find that they may need some support of their own. It may also be that the relationship with the person they are supporting does not follow the path that they expected. It is important that they are given clear guidelines and instructions on where they can seek help and assistance so that volunteering remains a positive experience for all concerned and that they provide effective support for the client.
• General responsibilities
  Volunteers need to understand clearly how the peer support program fits into the range of activities or services that may be provided by the organisation as a whole, and the organisational expectations of them. Are you expecting them to promote uptake of other services offered by the organisation (such as courses)? If yes, then you will need to provide information about what these services are.
  In any case, the volunteers are representing your organisation and hence pose some risk to the broader organisation that needs to be managed. This means that volunteers must be aware of general behaviours required from all organisational representatives. This is likely to include policies on such issues as occupational health and safety, drug and alcohol, privacy and confidentiality, use of vehicles etc. Policies for reimbursing volunteer expenses should also be laid down in advance.
  

You should consider carefully how the necessary training could best be delivered. Some of the more factual aspects of the training may be suitable for self-paced learning online. This may be a good option if you can afford the resources to develop effective online training[x] and mobility issues or geographic spread mean that you wish to minimise the need for face-to-face contact with the trainees. There are some aspects, however, that require a more interactive approach. The best way to learn about practicalities of providing formal peer support is undoubtedly via role play exercises with a chance for feedback and debrief in a safe setting. Organisations that provide all training in face-to-face sessions typically require volunteers to attend a total of 15 to 20 hours of training spread over several sessions (ranging from two or three days full time to eight to twelve weekly sessions of two hours each).

Consider the need for trainers to hold a qualification such as Certificate IV in Workplace Training and Assessment. This is particularly important if the training is designed to have some independent standing i.e. to lead to a qualification.

If you have a formal training program, then it is likely that it will also be appropriate to include a formal assessment process to ensure that the volunteers are able to retain what they have learned and put it in to practice. Assessment can take several forms – written tests (multiple choice questions, or short answers) or practical demonstrations such as a role play. Information on the assessment process should be provided to volunteers at the beginning of the training. They should be reassured about their ability to meet the requirements, but the assessment process should also be taken seriously.

Peer support programs can also provide opportunities for ongoing training and development for the volunteers involved in the longer term. Some types of peer support programs have somewhat of a hierarchy that allows volunteers to progress as they gain more experience and skills. Many volunteers find acting in a more senior capacity to be very rewarding – a way of having their contribution and skills acknowledged whilst making a larger contribution to the program. Examples of this include:

• Acting as moderator for an online forum,
• Leading a group,
• Mentoring new volunteers in one on one support programs, and
• Training new volunteers.

Whilst some volunteers contribute many years of valuable service in these types of roles, succession planning is important. Volunteers may need to decrease their involvement due to the condition itself, or other changes in life circumstances. The program should always be bigger than any individual.

4.3 Program Activities

The three general types of peer support programs – groups, online support and telephone support are discussed in turn in the following sections.

These activities are normally provided at no cost to peers who participate. Some organisations are able to reimburse volunteers (and sometimes peers) for out of pocket expenses directly associated with taking part.

By their very nature, peer support activities are ideally peer-led. This is not always practical depending on the time and skills that your peer group has to devote to the program. You need to consider carefully the role (if any) of health professionals in your program. They can provide valuable links to other relevant services and specialist information that are important in managing a condition, but peer support is a distinctly different type of support service and should remain differentiated.

4.3.1 Group support

Group programs of various kinds are a popular method of peer support. Some organisations choose to run group-based programs with a fixed duration and a pre-determined program. These are often aimed at people newly diagnosed with a specific condition and typically include an aspect of peer support. In this case, the volunteer is essentially providing a role model of how to live with a chronic illness. This opportunity for interaction may be part of a broader program including sessions run by health professionals.

Other peer support groups operate much more independently. They work on an ongoing basis whereby peers get together to share information and experiences. They may be primarily social events, or peers may choose to organise relevant speakers for themselves, including medical professionals but also suppliers of relevant goods and services or other relevant topics. An umbrella chronic illness organisation can still assist independent groups in a range of ways (perhaps for a fixed/limited duration) such as:

• Putting new members in touch with the group,
• Publicising events in newsletters,
• Finding speakers,
• Catering costs, and
• Providing a venue.

Groups are normally limited to eight to fifteen members, with one or two volunteer facilitators. They meet at a range of free public locations such as local libraries and community houses.

4.3.2 Online support[xi]

Online support is similar in nature to self managed groups – except the group is virtual in nature – people can take part in discussions online without physically moving from their normal routine, and at times that suit them. Being part of an online community also allows peers to share their stories with a broad group of people who may have a range of different experiences and situations. At its best, being a member of an online community can be a rich source of encouragement and support. The Internet is sometimes seen as primarily a tool for younger people, but the latest research indicates that over 80% of Australians (that’s nearly 17 million people) use the Internet.[xii] Online peer support can be a cheap and very effective way to connect many people with similar interests. A useful source of information about best practice in health services on the Internet (including a code of conduct) is the Health on the Net Foundation[xiii].

The role of the organisers of this type of peer support is quite different to other types of programs. An individual or organisation setting up online peer support essentially only provides the infrastructure so that people can interact. The form taken by such interactions is driven largely by members/users (perhaps within rules or boundaries set by the system administrators). Web hosting and other Internet services for community groups can be organised via the State Library of Victoria’s Vicnet[xiv]. Infoxchange also offers a range of technology services to community sector organisations[xv].

There are two quite different types of online peer support activities. The first type is what is called a newsgroup (or online list).

Several service providers can supply the necessary software infrastructure to set up a newsgroup[xvi]. Groups can be open to new members who provide their email address to a group administrator. A newsgroup is a useful way to share information and tips.

Group members (or list subscribers – there are various terms used), make a comment or seek input from others by sending an email that is distributed to the rest of the group. The software that runs the group typically allows members to participate either by:

a) individual emails forwarded on immediately, or
b) via a daily digest of emails from all members sent during the day, or
c) via the web interface where all past emails can be read on an ad hoc basis.

Members can change which one they prefer at any time (e.g. they can switch
to the web-only version if they like when they go on holidays if they are
not going to be reading their email.)

Setting up an online group is simple and the administration is straightforward. This type of peer support arrangement works well for sharing straightforward information such as the request above. Generally speaking, new members will find such a group by word of mouth or from a specialist newsletter or similar.

Newsgroups do not normally have specifically published rules of interaction. The administrator retains the right to exclude email addresses from which inappropriate messages are received.

The other type of online peer support is a discussion forum. This format allows members to post questions and comments directly onto a web site and hence discuss issues in real time. This is why such sites are also called chat rooms. Individuals are essentially chatting by typing their comments into a public space where any member can respond (immediately or at a later time). As with all Internet postings, the comments are anonymous (attached to a username). This has both strengths and weaknesses. It can make many people more comfortable about contributing personal stories and experiences and many of these are very useful for peers to hear. On the other hand, people with a different agenda (such as promoting their own goods or services) can also contribute without directly declaring their intent.

Commonly used software for community sector discussion forums is the open source software phpBB (see http://www.htmlbb.com/). Web design and system maintenance are not trivial tasks and require some specialist input.

Whilst the direction of discussion is driven by the participants, acceptable standards of behaviour need to be defined. Experience suggests that this is best done by the nominated moderators of the forum modelling good behaviour. Nevertheless, any discussion forum needs a clear set of rules. In addition to normal good Internet etiquette, other issues that may need to be addressed for a peer support forum are

• A clear statement that the forum is not about providing medical advice.
• Policy on promoting products or services (it is common for commercial organisations to sign up as members and make favourable comments about their own goods and services).
• Whose comments are welcome? Is the forum only for peers, or are carers and family members welcome to contribute too? Perhaps carers need their own forum to chat about issues of relevance to them independently of the peer group.
  

Many discussion forums are attached to a broader web site that provides other advice and information about the relevant disease or condition. This makes the forum more visible to potential new members (via web searches etc.). But potential new members need to do more than just find that the forum exists, to make the choice to join in. Most people “lurk” or read the ongoing conversations on the forum before they choose to join the forum so that they can reply. This means that to get underway requires an initial group of peers to chat online in a way that encourages others to join in. Providing the online structure of the forum without a group of peers to start the conversation is like inviting people to join a party that is simply an empty room.

It is also possible to set up one or more private discussion groups. This type of peer support is like the support groups described in Section 3.3.1 except that the members meet online at a specific time.

4.3.3 Telephone Support

Another very flexible source of peer support is a telephone support program. Telephone support programs are valuable to peers who are isolated by location or mobility issues, or are not available to attend regular face-to-face meetings.

It must be clear to everyone involved in telephone support that the service to be provided is not emergency or ad hoc counselling or assistance. Calls take place at predetermined times and are always made by the volunteer calling the peer (not the other way around). Most volunteers make support calls from home and are reimbursed for call costs (as appropriate). Organisations should ensure that the phone technology used is such that the phone number of the volunteer is not available to the peer[xix]. Most organisations also set a limit on the number of calls between any given pair of volunteer and peer (although the limit varies widely). The limit reminds both volunteer and peer that the purpose of the support sessions is ultimately for the peer to become more confident and independent in dealing with their condition.

If your organisation has the capacity to deal with the information, you may find it useful to ask volunteers to complete a basic call record sheet. This can be a way to solicit information about whether there are any difficulties arising that need to be followed up with the peer or any additional information that should be provided in volunteer training.

If a peer applies for telephone support, the co-ordinator of the program goes through the following steps:

• Speak to applicant to collect or clarify relevant details and confirm suitability,
• Match the peer with a trained volunteer,
• Advise the peer of the support that will be provided and the rules that govern the service (such as the maximum number of calls and the scope of issues that can be covered),
• Pass on necessary details to the volunteer (e.g. some organisations operate using first names only for volunteers and peers),
• Follow up any problems raised by either the peer or the volunteer,
• Seek feedback from the volunteer and peer to ensure the program can improve.
  

Successfully matching volunteers and peers is as much an art as a science, but matches have a greater chance of succeeding if the two people involved have similar circumstances such as:

• Similar stage of condition,
• Similar age or family circumstances,
• Similar study, work or professional circumstances, and/or
• A common interest or hobby.

You should ensure that both the volunteer and the peer have a way to opt out of the arrangement if it is not working to their satisfaction. In this case, the co-ordinator should speak to both the volunteer and the peer and try to match each of them to another person. It must be emphasised that this is a “no fault” situation and that sometimes individuals do not make a good connection with each other.

Some organisations offer one on one face-to-face peer support instead of, or in addition to, telephone support. This is generally organised in a similar manner.

Another option is telephone peer support where people are proactively contacted by a volunteer and offered peer support, rather than having to request it. This is especially beneficial for programs wishing to support people who are newly-diagnosed with a condition and may need assistance finding the services to support them, or to engage new members of an organisation. This form of peer support can be provided by volunteers working from an organisation's office. It is ideal for more than one volunteer to be working at a time to allow them to both debrief and share ideas.

The volunteers go through the following steps:

• Phone peers, based on a list provided by a coordinator or the organisation of new members or people known to be newly-diagnosed,
• Introduce themselves and the organisation and provide clear information about what the peer support service offers (a script is useful at this point),
• Provide information about how the peer can contact the organisation at a future date if required, and when the peer support service is available (it may be one morning per week that volunteers are available),
• Keep a resource pack of information to answer commonly-asked questions from peers,
• Follow up any problems raised, often by calling back the peer after doing some research with support of the coordinator and/or other volunteers.

4.4 Promoting your program

The main purposes of promoting your program are to assist recruitment of both volunteers and peers, plus to secure or maintain financial support. Depending on the stage of development of the program, it would be worthwhile to develop a marketing plan of how, where and when to promote the program. You need to determine what publications (print, electronic etc.) would be useful. Remember to utilise the talents of the volunteers and peers: for instance, first hand accounts can be very powerful in the promotion of the program. There is some academic research available that supports the value of peer support programs and this can be useful as evidence of effectiveness in grant applications, publicity materials etc[xx].

Collaboration with other peer support programs is likely to be very valuable since resources and ideas can be shared. Many people experience simultaneous multiple chronic illnesses, so there is common ground to be explored.

4.5 Supporting volunteers and program activities

For peer support programs that leave volunteers dealing directly with individual peers and their issues, you should consider how the volunteers could debrief their experiences. This may not be necessary for organisers of informal social events or acting as a moderator for an online discussion forum, but some forms of peer support can be emotionally draining for peers and in that case you have a responsibility to provide a way of addressing any issues raised. Volunteers should always have access to someone who will support them on an as needs basis. This can take the form of regular one-on-one review between each volunteer and the volunteer co-ordinator at intervals to be fixed based on feedback from those involved.

Volunteers may also value the opportunity to get together as a group and compare their own experiences of providing support. This can be done in an informal social setting that recognises and rewards the efforts of volunteers. Other forms of acknowledgement such as certificates may also be appropriate.

There are many operational records that you will need to keep in order to know what is happening within your program. This includes:

• Contact information for volunteers and peers
• Relevant personal details to assist in matching volunteers and peers such as age, condition, family situation, occupation, cultural background/languages spoken and hobbies
• Training records for volunteers
• Contact history for volunteers and peers.

If your program is just one of many functions that your organisation performs then you may have an IT system available to use to store all this information. If you are starting from scratch, you may find that a spreadsheet (such as Microsoft Excel) gives you sufficient functionality. If you are using a spreadsheet, then think carefully about what fields (i.e. columns) of data you need so that you can easily and automatically use functions like mail merge.

If you have hundreds of contacts, then it’s time to think about some custom built software for managing contact data. There are many packages available including some that are either open source (i.e. free) or commercial products that are free to community groups or charities, including:

• SugarCRM[xxi]
• Salesforce[xxii]
• ebase[xxiii]

This list is only provided as an example of some of the products available. Each of these has strengths and weaknesses and we are not recommending any particular package.

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