Starting a Hepatitis Support Group

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Starting a Hepatitis Support Group

by Department of Veterans Affairs

Article Date: 7/27/2004

Note: This article is adapted from "Initiating and Maintaining a Hepatitis C Support Group: A How-To Program Guide" published by the Department of Veterans Affairs. See the original here.

If you don't have a support group in your area, you can start one. Support groups offer those with hepatitis an opportunity to share feelings, anxieties, and fears with others who face similar issues.Support group members benefit from the group atmosphere and enjoy an improved quality of life while facing chronic hepatitis. Anxieties are reduced, and compliance with therapy and medical outcomes are often improved.Support groups help patients, family members and friends learn more about hepatitis and gain some control over their lives.What does a support group provide? Group cohesion. Feelings of trust and safety are primary benefits of group affiliation, as is the recognition of the universality of one's problems, which decreases feelings of personal isolation.

Education. Interpersonal learning is exchanged in group settings, and increased knowledge about hepatitis C infection is the first step toward successful self-care and evaluation of treatment options. Many patients have misconceptions and misinformation about their disease, which can be remedied by group participation.

Discussion. Patients learn as much from each other as they do from providers and staff. Creating an opportunity for dialogue facilitates this exchange of information.

A venue for expression of needs. Health-care providers can learn what patients feel they need to help them manage and cope with hepatitis C infection.

Prevention. Alerting patients and caregivers to behavioral risk factors can help limit transmission of hepatitis C, while at the same time assure them about what kind of contact is safe (e.g., kissing, hugging, playing with their child).

Steps in Support Group Development

Assess the Need

A formal or informal needs assessment is essential to help with decisions you will have to make about group format, meeting time, group size, and so on. This process can be as simple as engaging several individuals in a discussion about what they would find helpful.

Asking people what they need is important; do not assume that you already know what they want. Collect information about both the content of the group meetings (e.g., topic interests) and logistics (e.g., when and how often to meet). People with HCV will have differing opinions, so you will have to go with what appears to meet the greatest need for the greatest number of patients.

Identify Participants

This is the first and probably the most important decision to make. Keep in mind that people with HCV may be at varying stages of their liver disease and have varying knowledge about hepatitis C virus (HCV). On the basis of your needs assessment, you will have to decide who would benefit most from group participation:

Patients on antiviral treatment?

Patients not eligible for antiviral treatment or who have failed treatment?

End-stage liver disease patients?

Any and all patients with hepatitis C and their family members?

Also, how many patients do you plan to invite? Your target population and selected group format largely will determine this.

Select the Group Format

There are a variety of group formats to consider. Groups can differ from each other on several different dimensions. The most relevant dimensions for support groups are structure, size, and focus.

A process-oriented group is one in which attention is focused more on individual members' concerns, thoughts, and feelings rather than on topical information provided by an "expert."

The group format you select for your participants will depend largely on their needs and your available resources. Below are several general categories of groups. Your hepatitis C group may be a hybrid or modification of these types.

Support Groups Types At a minimum, these groups provide opportunity for social interaction. They may be loosely defined, although participants usually share some characteristics. Some questions to consider:

Should the group be patient-led or provider-led?

Should the group be process-oriented or topic-oriented?

Topics could be predefined or ad hoc, based on the needs of the members. Process groups are less structured, but no less challenging to ensure effectiveness. The optimal size for a process-oriented group is about 8 to 12 people. Education-Oriented Group. These types of groups are oriented more towrds education than mutual support. They are usually organized around a topical objective, and may consist of a series of meetings of defined duration.

Topics are established in advance, and an expert in the topic leads the presentation, although a facilitator usually is also present. Social support is a byproduct rather than a primary goal. An education-oriented group is usually open to family members. Therapy Group. The objective of a therapy group is mental health intervention, so these groupsd should be led and facilitated by a mental health professional.

The size may be limited depending on nature of group. The group may be either ongoing or time-limited, and is usually organized around common diagnosis or diagnoses among patients. These groups are usually closed to family members or others.

Recovery Group. These groups convene to promote and maintain abstinence from substance use. There is usually a focused topic and/or mutual support (like in 12-step fellowships). These groups are usually ongoing, and participants may "drop-in" as needed.

Hybrid/Combination Groups. These groups may involve a dual population, such as those with HIV/HCV co-infection or HCV and addictions treatment. The group may be a dual-purpose group or involve splitting the session to address multiple goals.

These groups offer both education and mutual support.

Identify Your Resources

It may be helpful to have two facilitators for a group, with one being a professional and the other, if possible, a peer (person with HCV) facilitator.

Using two facilitators in any group has several advantages:

While one facilitator is taking a more active role by speaking to or facilitating the group, the other facilitator can attend to the process or system issues of the group, making note of followup issues for after the group meeting and offering a crucial second point-of-view.

Having two facilitators offers a chance to model positive interpersonal skills: facilitators can openly disagree on subjects and demonstrate constructive resolution.

Practically, having two facilitators means the group can continue even on days when one facilitator is absent.

Choosing a Second Facilitator People with HCV may prefer leadership from another person who also has HCV, since they may be seens as a more credible source of information than a professional.

However, having a professional facilitator ensures that the interpersonal aspects of the group are therapeutic, regardless of the group's type (e.g., educational vs. process).

The professional facilitator should be willing to train and mentor the peer facilitator in developing basic group skills just as the peer facilitator should train and mentor the professional facilitator in the personal experience of having HCV.

This training can be formal or informal, but the most important learning occurs with continuous feedback and discussion with debriefing after group sessions.

The Role of the Facilitators

It is crucial that before the group begins, the facilitators agree on their roles and how they will manage the group together.

Facilitators may decide to be completely equal in leadership and division of labor or to divide their responsibilities differently: one facilitator may be the leader while the other plays a more secondary role, or one may be in charge of the group's process while the other is in charge of the content.

How the responsibilities are divided is not as important as having the division clear and agreed upon by the facilitators.

Guest Speakers and Topics Early on, start building a list of contacts to use as potential speakers at your meetings. Keep in mind that many speakers need several months' lead time to commit to a specific date or time.

Speakers should be familiar with hepatitis C patients and possess a thorough knowledge of the topic or their specific content area. Speakers whose presentations you have attended and enjoyed and those who are adept at drawing people into discussions are best to invite. Support group planners may seek out guest speakers with specialized knowledge or expertise in these areas:

Your Liver & Hepatitis C

Understanding Lab & Biopsy Results

Risk of Transmission & Intimate Relationships

Diet & Nutrition

Managing Sleep, Fatigue, and Exercise

Interferon-based Treatment for Hepatitis C

Alternative & Complementary Therapies for Hepatitis C

Symptom & Side-effect Management

Liver Transplant Issues

Emotional Self-Care

Anger Management

You may also want to consider having physicians, nurses, social workers, or psychologists attend the group sessions from time to time (or as guest speakers) to act as further resources for the group. Ideally, these individuals should have experience in the area of liver disease or in treating serious illness.

The American Liver Foundation The American Liver Foundation (ALF) is another resource for starting support groups. ALF has an expert speakers' bureau and provides many helpful suggestions for structuring and conducting your support group. You may wish to contact ALF and work together once you have an idea as to the purpose and target population of your group.

ALF is also able to list your support group on its local Web site. You may find out how to speak with the ALF representative for your area by contacting ALF at http://www.liverfoundation.org/ Attend to Logistics Planning The following planning points are important to address early on:

When are most participants available?

When is the facility available?

How frequently will people be able to meet (weekly, monthly)?

Is there adequate parking?

Is there access to audiovisual equipment?

Is the room arrangement and number of chairs sufficient for the group?

Who will be responsible for opening and closing the facility?

Location Once you have an idea of when and how often your group will meet (at least for the first couple of meetings) you need to secure a location for the group. The space should be large enough to seat everyone comfortably, but if the space is too large it may feel cold and impersonal for the purpose of the support group. Here are some issues to consider when choosing a location:

Payment. Some locations may require payment for use of the facility.

Civic organizations. Contact community resources (e.g., library, town hall) or community organizations (American Red Cross, Rotary Club, Lions Club, YMCA/YWCA, Salvation Army) may provide space for meetings. Most organizations have community relations offices as a contact point. Let your point of contact know projected dates and times, that the meetings are free of charge, and that the group is voluntary and nonprofit. Also consider local hospitals, health centers, a doctor's office, or the local Visiting Nurses Association. Have an idea of the total number of meetings and/or the number of months you plan to meet prior to making the initial contact call (most meetings last approximately 11/2 hours, plus time for questions).

Food and Refreshments. Food helps to attract and maintain group participation. If possible, provide food that is healthy for patients with liver disease (i.e., avoid high-sugar sodas and caffeinated beverages). If you serve food, remember the little things everyone needs (napkins, utensils, serving spoons). Don't forget time for setup and cleanup.

Directions and Signs. Patients will easily get frustrated if they directions are misleading or incorrect. Also consider confidentiality issues when creating your signs for the support group. For example, `Liver Support Group` would likely be preferable to `Hepatitis C Support Group` when posting signage.

Announcements. Groups are great forums for disseminating information, especially information about upcoming meetings and speakers. If you have handouts, brochures or flyers, do you have enough copies?

Room Environment. Check temperature, lighting, and seat arrangement in advance. You may need to obtain a key beforehand to gain access to the room.

Name Tags. Will participants wear them or not?

Safety and Security. Wherever you hold your group, be sure to consider safety issues (adequate lighting, in a safe area), especially for night groups, to minimize the possibility of harm to or harassment of participants.

Building the Group

The first meeting will generally be organizational in nature. Each member should have the opportunity to express what he or she would like to experience from the group. It's important to ask, not assume, what participants will want. Not all members will want to listen to a guest speaker every month. Some might prefer to just vent their emotions and learn to deal with side effects of treatment. Collect information about both topic interests and logistics (when, how often to meet).

Guidelines. Having some general guidelines and expectations regarding group conduct established from the beginning can make the group more comfortable for the members. This will help to resolve difficult situations without appearing dictatorial. Confidentiality. At the first meeting it is a good idea to establish and emphasize that every member should respect the confidentiality and anonymity of individual group members. Your group may also decide if it is to be open or closed to spouses, family members, or friends. Group members should feel free to express themselves without fear that their private lives will become a matter of public knowledge outside the group. Mission Statement. To begin, prepare a mission statement for the first meeting. Ask members to suggest changes or additions. With their input and feedback, you will be able to ensure that the interests and needs of the group will be met. You should review this mission statement periodically to help the group stay focused on its purpose and goals.

Here is an example of a Mission Statement:

"A support group serves to empower the patient through increased knowledge gained from speakers and other members as well as through the assurance that he/she is not going through his/her problem alone."

Evaluating Group Preformance

It's important to solicit feedback from group members. An effective facilitator uses to shape the group to their needs. Ideally, feedback should address three key aspects:

Structure: length, meeting times, formats

Process: facilitation style, issues between participants

Content: topics for guest speakers or focused discussions.

Once you solicit a group's feedback, it is extremely important to use that information.

Facilitators may decide to make changes directly based on member feedback, bring feedback to the group for discussion, or engage the group in a more collaborative planning of changes. Let the group know at the outset that their feedback shapes the group, and then show them their feedback matters by altering the group accordingly.

Members feel empowered when their efforts create real change. To ask the group's opinions and then not act on them risks alienating members and divesting them from their very own group.

The group fundamentally belongs to the members to address their concerns and needs: the process within the group should empower members, encouraging their roles as active participants in their own health both within and outside of the group.

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