Support Group Leader Resource Guide Getting Started
Support Group Leader Resource Guide | 1
Table of Contents
About ZERO Prostate Cancer.............................................................................3
Introduction......................................................................................................... 3
Preparing for Your Support Group Leader Role...................................................4
Starting a Support Group....................................................................................8
Building, Growing, and Maintaining Your Group.................................................16
Communication and Dealing with Difficult Scenarios.........................................18
Safety and Setting Group Boundaries...............................................................23
Self-Care........................................................................................................... 26
Succession/Transition Planning.........................................................................28
Final Thoughts and Continuing the Journey.......................................................30
Support Group Leader Role Resources.............................................................31
ZERO Educational and Community Resources..................................................32
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About ZERO Prostate Cancer
ZERO Prostate Cancer (ZERO) is on a mission to improve and save lives from prostate cancer through advocacy, education, awareness, and support. Formerly known as the National Prostate Cancer Coalition, ZERO was founded in 1996 to stand up for people impacted by prostate cancer. Today, ZERO serves as the nation's leading prostate cancer organization, advancing a future where prostate cancer detection is early, support is unwavering, and care is accessible to all. For over 30 years, ZERO has led the way in prostate cancer advocacy, screenings, and partnerships, successfully unlocking funding toward breakthrough discoveries, treatments, and lifesaving access to care. As the nation’s #1 provider of prostate cancer resources, programs, and services, ZERO has supported millions of people at-risk or diagnosed, and their families. As the voice of the prostate cancer community, ZERO's urgent focus on breaking barriers to survival—by closing gaps in diagnosis, treatment, and care— brings critical attention to those most likely to be impacted by this disease. Learn more at ZEROcancer.org .
Introduction
This ZERO Support Group Leader Guide is designed to provide valuable insights and recommendations for individuals serving as support group leaders for prostate cancer patients. Support group leaders (SGLs) play a crucial role in creating a safe and supportive environment where individuals can share their experiences, concerns, and coping strategies related to prostate cancer. They facilitate group discussions, disseminate educational resources, and promote peer-to-peer connections among participants. ZERO's Support Groups are grassroots, volunteer-led meetings for people impacted by prostate cancer. The interactive format allows members to exchange information and ideas with the goal of empowering members with knowledge that comes from a shared experience. Participants include patients, survivors, and caregivers. Sometimes healthcare professionals, like social workers, patient navigators, oncologists, urologists, or industry partners may attend as guest speakers. Support group leaders demonstrate care, concern, acceptance, and understanding while acknowledging the unique needs of all people impacted by prostate cancer. This guide aims to equip ZERO's leaders with valuable strategies, best practices, and insights to enhance your effectiveness in providing support. Whether you are a seasoned SGL or new to this role, this Guide will offer practical guidance on topics such as facilitating discussions, maintaining group dynamics, addressing concerns, and promoting overall well-being. By leveraging the shared experiences and collective wisdom, this guide will empower you to create a supportive and nurturing environment for those facing the challenges of prostate cancer.
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Preparing for Your Support Group Leader Role
Your support group will be unlike any other group. You, as the group leader, have your own unique style and personality to offer the prostate cancer community. Support groups are a safe, welcoming place for all people impacted by prostate cancer. Support groups encourage anyone diagnosed at any stage of prostate cancer to attend - survivors, newly diagnosed, localized or advanced disease, and those on various treatments. Many support groups find it beneficial to invite partners and family members as well. Sometimes, if a great need exists, a specific group may be started. For example, if several people have chosen active surveillance for treatment and determine a group should discuss only that topic, a separate and specific support group may be warranted.
Your Role as A Support Group Leader
Support groups are led by volunteer support group leaders who want to give back. Support group leaders are experienced, dedicated members of the prostate cancer community who provide valuable support and educational resources to others impacted by this disease. As a support group leader you help foster a supportive environment whether in an in-person or a virtual group. Becoming a strong leader takes time and practice. A true leader brings people together, builds trust within the group, and facilitates collaboration among members.
• Review Support Group Leader Role Description
Do I need any special qualifications to become a Support Group Leader?
• No formal qualifications are required, but you should have a personal connection to prostate cancer (as a patient, survivor, or caregiver) and have achieved a level of emotional stability in your own journey.
• You must complete an annual background check and ZERO's required training, including the 9-chapter Support Group Leader Animated Training Series.
• Ability to use technology to submit monthly meeting reports via Google forms
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What training is required before I can start a support group?
• Watch the complete Support Group Leader Animated Training Series - A nine-chapter animated training series for anyone who is involved in leading a support group or is thinking about being a leader or co-lead. They are no longer than 3.5 minutes each and talk about all of the basics about being a support group leader or co-leader. All leaders and co-leaders are required to watch this series. https://www.youtube.com/playlist?list=PLRyBYF-CJVsgB223dAgA9cSI8Hq0FnjIP
• Read this Support Group Leader Resource Guide thoroughly
• Watch the 15 Things Veterans Want You to Know video
• Attend one Virtual ZERO Orientation Training
• Submit an annual background check
• Review and accept ZERO's Standard of Excellence Policy https://zerocancer.org/zeros-standards-excellence
• Familiarize yourself with privacy requirements
• Report your ATTENDANCE to ZERO: By consistently reporting monthly attendance, support group leaders contribute to the overall success and sustainability of the program, ensuring that individuals affected by prostate cancer continue to receive the necessary support and resources. If you miss a month or two, just report your combined number. Reporting attendance demonstrates accountability and commitment to ZERO's mission, fostering trust and transparency within the organization.
Attendance Form Link: 2026 Support Group Leaders - Monthly Support Group Report
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Preparing for Your Support Group Leader Role
Some benefits of becoming a Support Group Leader with ZERO:
• Participate in monthly Support Group Leader/MENtor calls with the ZERO team to lean on one another and learn from each other.
• Regularly hear from industry partners, prostate cancer experts, and health professionals on the latest in prostate cancer treatment, research, clinical trials, diagnostics, and side effect management. These meetings allow support group leaders to stay on top of treatment advances and prostate cancer news, helping you to inform and support your group's participants regularly.
• Access to a support group leader portal with trainings, videos, resources, and educational literature.
• An invitation to an annual, in-person support group leader training.
• Access to ZERO's portfolio of support, education, advocacy, and health equity programs.
• Encourage a group culture where all participants feel welcome, comfortable and have the opportunity to share experiences.
• Facilitate conversations that allow all members of the support group to share their thoughts.
A few important tips support group leaders must remember: Never give medical advice or endorse a single medical provider, treatment, or product. Medical advice should only be given by an individual's healthcare provider.
Assessing Personal Readiness to Support Others
Emotional readiness is a personal journey, and it is essential to be honest with yourself about your current state. If you feel you need more time or support before taking on a leadership role, that's perfectly acceptable. Seeking guidance from experienced individuals or mental health professionals can also help you better assess your readiness.
Here are some ways to determine if you are emotionally ready to lead a support group:
• Personal Healing Journey: Reflect on your own healing journey and how far you've come in coping with prostate cancer or supporting a loved one through it. Having achieved a certain level of emotional stability and resilience is important before taking on a leadership role. • Emotional Capacity: Leading a group can be emotionally demanding. Assess your ability to remain composed, empathetic, and non-judgmental when others share their struggles or intense emotions.
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• Objectivity: As a leader, you need to maintain objectivity and avoid projecting your personal experiences onto others. Evaluate your ability to separate your own journey from those you'll be supporting. • Active Listening Skills: Effective leaders are excellent active listeners. Reflect on your ability to listen attentively, ask clarifying questions, and provide a safe space for others to share their stories. • Commitment and Availability: Leading a group requires a significant time commitment and consistent availability. Assess your ability to dedicate the necessary time and energy to fulfill this role effectively.
• Self-Care Practices: Supporting others can be emotionally draining. Assess your self-care practices and ability to maintain a healthy balance to prevent burnout.
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Starting a Support Group
How Support Groups Operate
Support group meetings are operated and led by dedicated volunteers and facilitators who are independent from ZERO. This includes both in-person and virtual support groups.
ZERO provides resources, materials, and training to support these groups in advancing our shared mission to end prostate cancer. Select support groups have permission to use ZERO owned trademarks (such as ZERO Prostate Cancer and Us TOO). However, ZERO does not direct or control the specific content, discussions, or guidance shared during support group meetings and assumes no responsibility for such content. Each group operates independently while serving the prostate cancer community.
Do I need a co-leader?
Having co-leaders for a peer to peer support group is important for the following reasons:
• Shared Responsibility: Co-leaders can share the workload and responsibilities, preventing burnout and ensuring the group's sustainability.
• Diverse Perspectives: With two or more leaders, the group benefits from diverse viewpoints, experiences, and leadership styles, enriching discussions and decision-making processes.
• Continuity: If one leader is unavailable or needs to step down, the other co-leader can provide continuity, ensuring the group's smooth functioning.
Shared Responsibility
Diverse Perspectives
Continuity
Rotating the responsibility of facilitating the meetings on a monthly basis, where a different member takes the lead in running the meeting each month, can help distribute the workload, encourage shared ownership, and provide opportunities for personal growth and leadership development within the group. While not required, having a co-leader is strongly recommended. Co-leaders share responsibilities, prevent burnout, provide continuity when one leader is unavailable, and bring diverse perspectives to the group. Having 2 - 3 others to help to build a stronger, more resilient group at the beginning stages.
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Planning your first meeting
The first meeting sets the tone for the group, so it's essential to create a safe, supportive, and informative environment that encourages open communication and fosters a sense of community. Continuously seek feedback to ensure the meeting effectively addresses the evolving needs and concerns of the group members.
Location
Online or Virtual Meetings: Utilize video conferencing platforms or online forums to facilitate remote support for those who cannot attend in-person meetings.
In-Person Meetings
• Choose a centralized and easily accessible location with free parking and public transportation nearby.
• Potential venues: Cancer center, urology office, hospital, church, library, community center, firehouse, private room in a restaurant, coffee shop, YMCA, or VFW hall.
• Ensure the location is free of charge or has affordable rental fees.
• Confirm the venue has easy access to restrooms.
Virtual Meetings
• Select a platform like Zoom, Google Meet, or others.
• Consider costs associated with the virtual platform.
• Ensure you are comfortable using the chosen platform.
Hybrid Meetings
Hybrid meetings require specific technological resources and infrastructure to accommodate both in-person and remote participants effectively. Groups without access to these resources may face challenges in implementing hybrid meetings successfully. Here are a few reasons why hybrid meetings may only work for groups with the necessary technology available: • Video Conferencing Setup: Conducting hybrid meetings requires a reliable video conferencing platform and equipment, such as webcams, microphones, and speakers, to facilitate seamless communication between in-person and remote participants.
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Starting a Support Group
• Internet Connectivity: Stable and high-speed internet connectivity is crucial for smooth video and audio streaming during hybrid meetings. Groups without access to reliable internet connections may experience disruptions or poor quality, hindering the overall experience. • Technical Support: Setting up and troubleshooting technical issues during hybrid meetings can be challenging. Groups with limited technical expertise or support may face difficulties in ensuring a seamless experience for all participants. • Accessibility Considerations: Hybrid meetings should be designed to be inclusive and accessible for all participants, including those with disabilities or special needs. This may require additional assistive technologies or accommodations, which may not be available to groups without the necessary resources. • Physical Space and Layout: The physical meeting space should be designed to accommodate both in-person and remote participants effectively. This may involve setting up additional screens, cameras, and audio equipment, which may not be feasible for groups with limited resources or space constraints. Groups without access to these resources may find it challenging to implement hybrid meetings effectively, potentially leading to frustration, technical difficulties, and an overall inadequate experience for participants. It's important for groups to assess their technological capabilities and resources before deciding to implement hybrid meetings. If the necessary resources are not available, it may be more practical to focus on either fully in-person or fully virtual meetings until the required technology and support can be obtained.
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Format
Choosing a format for peer-to-peer support facilitation
When selecting a format, consider the group's size, preferences, and needs. It's also beneficial to incorporate a combination of formats to keep the meetings engaging and cater to different learning styles and preferences. Regularly seek feedback from participants and be open to adjusting the format as needed.
Consider the following options:
• Open Discussion: This format allows for an organic flow of conversation, where participants can share their experiences, ask questions, and offer support to one another. The facilitator guides the discussion and ensures everyone has an opportunity to speak.
• Structured Sharing: Participants take turns sharing their stories or updates within a set time limit. This format ensures everyone has a chance to speak and be heard.
• Topic-Based Discussions: Each meeting focuses on a specific topic related to prostate cancer, such as treatment options, side effects management, or emotional well-being. The facilitator can provide educational materials and facilitate discussions around the chosen topic.
• Guest Speaker Presentations: Invite healthcare professionals, experts, or individuals with relevant experiences to share their knowledge and insights, followed by a Q&A session.
• Breakout Groups: Divide participants into smaller groups based on their interests, experiences, or stages of treatment. This allows for more intimate discussions and the opportunity to connect with others facing similar challenges. • Activity-Based Sessions: Incorporate activities such as art therapy, journaling, or mindfulness exercises to provide alternative ways for participants to express themselves and cope with their experiences.
Welcome and Orientation
So now, you’re ready to host your first meeting!
• Provide an overview of the format, schedule, expectations, and agendas for the meetings.
• Explain the purpose and goals of the support group.
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Starting a Support Group
Facilitating Introductions and Icebreaker Activities:
• Encourage participants to introduce themselves and share their stories or experiences (if comfortable).
• Incorporate icebreaker activities to help participants feel more at ease and build rapport.
Establishing Rapport:
• Create a warm and welcoming environment where participants feel comfortable sharing their thoughts and feelings.
• Demonstrate empathy, respect, and active listening to foster a sense of trust and connection.
When planning your first meeting as a support group leader, here are some important things to consider:
• Set a Welcoming Tone: Create a warm and supportive environment where participants feel comfortable sharing their experiences and concerns. Introduce yourself and explain the purpose of the group.
• Establish Ground Rules: Discuss confidentiality, respect for different perspectives, and active listening. Encourage participants to share only what they feel comfortable with.
• Provide Educational Resources: Have reliable information available about prostate cancer, treatment options, side effects, and available support services. This can help address common questions and concerns.
• Encourage Peer Support: Facilitate discussions that allow participants to share their personal experiences, coping strategies, and offer emotional support to one another.
• Address Practical Concerns: Be prepared to discuss practical issues such as managing side effects, navigating the healthcare system, and accessing financial or transportation assistance if needed.
• Invite Guest Speakers: Consider inviting healthcare professionals, such as oncologists, nurses, or counselors, to provide expert information and answer specific questions.
• Promote Self-Care: Emphasize the importance of self-care practices, such as exercise, healthy eating, stress management, and seeking professional help when needed.
• Plan Follow-Up Meetings: Discuss the frequency and format of future meetings, and gather feedback from participants to ensure their needs are being met.
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Continuous Evaluation and Improvement
• Regularly seek feedback from participants regarding their experiences, suggestions, and areas for improvement.
• Be open to constructive criticism and use it as an opportunity to enhance the support group's effectiveness.
• Adapt and evolve the group's structure, activities, or approach based on the changing needs and preferences of the participants.
Offering refreshments
If you have the option, offering refreshments during your group meetings can create a welcoming and comfortable environment for participants. Consider the following options:
Provide Heart-Healthy Snacks
• If feasible, you can supply nutritious snacks that cater to the dietary needs of prostate cancer patients.
• Opt for options like fresh fruits, vegetables with hummus, whole-grain crackers, and unsalted nuts.
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Starting a Support Group
Potluck-Style Contributions
• Alternatively, you can encourage attendees to take turns bringing in snacks or refreshments on a rotating basis.
• This approach not only shares the responsibility but also promotes a sense of community and involvement among the group members.
When planning for refreshments, be mindful of any dietary restrictions or allergies among the participants. Consider providing a sign-up sheet or a shared online document where attendees can indicate their willingness to contribute and list the items they plan to bring. This coordination will help ensure a variety of options and prevent duplication.
Additionally, it's essential to maintain proper food safety practices, such as:
• Ensuring proper storage and handling of perishable items
•
Providing serving utensils
• Having disposable plates and napkins available
By offering refreshments, you create a welcoming atmosphere that encourages socializing and fosters a sense of community among the group members.
Decide on a schedule and frequency for your meeting
• Support groups can meet on a monthly, bi-monthly, or weekly basis. However, the most common frequency for support groups is once per month. When determining the meeting cadence, it's essential to choose a frequency that aligns with the preferences and availability of your group members. • Some groups opt to take a break during the months of November and December due to potential scheduling conflicts arising from the holiday season. Similarly, groups located in regions with hot climates may choose to suspend meetings during the summer months to accommodate members' preferences and travel plans. • The key is to establish a consistent meeting schedule that works best for your specific group, taking into account factors such as member availability, location, and any potential seasonal considerations. Regular communication and flexibility in adjusting the schedule, if needed, can help ensure optimal participation and engagement within the support group.
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Meeting Times:
• For virtual meetings, consider accessibility across different time zones.
• For in-person meetings, consider the time of day when room space and parking are most accessible.
• If driving after dark is an issue, consider a lunch meeting.
Duration:
The typical length for support group meetings is 90 minutes or more. This timeframe allows for comprehensive discussions, sharing of experiences, inviting a guest speaker with time for Q & A, and fostering a supportive environment among participants.
Cost-effective ways to communicate with your group:
• Email is the most cost-effective way to communicate with members.
• Telephone and text message are alternative options.
Determine Preferred Method: Discuss with the group to identify the preferred communication method.
• Send Reminders: Send meeting details well in advance and a final reminder a day or two before the meeting.
• Privacy: Send emails to group members using BCC to keep email addresses.
Resources
• Quick Start Guide: Quick Start Guide
• SGL Frequently Asked Questions: Frequently Asked Questions
• First Meeting Checklist: First Meeting Checklist
• Example Meeting Outline for In-Person Meeting: Sample In-Person Meeting Template
• Example Meeting Outline for Virtual Meeting: Sample Virtual Meeting Template
• In-Person Meeting and Virtual Meeting Etiquette: Etiquette Doc
• Report your Attendance every meeting by using this link: 2026 Support Group Leaders - Monthly Support Group Report
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Building, Growing, and Maintaining Your Group
A successful support group requires consistent effort, time, and patience. Whether you're starting a new group or revitalizing an existing one, effective marketing and promotion can make a significant difference. Establishing a strong team mentality from the outset will result in more dedicated members, committed leaders, and widespread publicity. Once you are approved, ZERO will list your support group online via our Find a Support Group page.
Here are some strategies to consider:
• Establishing Rules, Rights, and Expectations: Clearly define the group's guidelines, participants' rights, and expectations from the beginning. This fosters a sense of structure and creates a safe, inclusive environment. • Creating Preliminary Meeting Agendas: Develop tentative agendas for the initial meetings, outlining topics, activities, and discussion points. This ensures a smooth flow and helps participants understand the group's purpose and format. • Promotion of Peer Support Resources: Leverage ZERO's resources to distribute digitally or in print. These can be shared with healthcare providers, community organizations, and potential members. • Creating Print and Digital Communication Materials: Design flyers, or digital assets that provide details about your group, meeting times, and contact information. These can be displayed in strategic locations or shared online. ZERO has a WORD template for this available. • Leveraging Social Media Platforms: Utilize social media platforms to connect with your local community, share updates, and promote your group's activities. Social media can be a cost- effective way to reach a wider audience. • Engaging Community Partners and Influencers: Collaborate with local healthcare providers, patient navigators, urology offices, cancer centers, social workers, and community organizations. Share your meeting details, offer to provide educational materials, and request to be listed on their websites or bulletin boards. Remember to connect with ZERO Staff at supportgroups@ zerocancer.org to let us know where you engage locally.
• Promoting through Relevant Organizations and Community Entities: Network with other groups, professionals, clergy, administrators, and media personnel in your area.
• Community Health Fairs: Attend a ZERO Community Educator training and host a table at local community events to raise awareness about your group and prostate cancer. ZERO has educational materials free of charge that you can request including a branded ZERO runner for your table. Remember to let us know about ZERO in the community at local events! You can do this by submitting a Report Your Own Volunteer Opportunity .
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• Word of Mouth: Encourage existing members to spread the word about your group within their personal and professional networks. Word of mouth can be a powerful tool for recruitment.
• Networking and Outreach: Use ZERO website to show your local support group details. Be prepared to share information about your group whenever the opportunity arises.
Remember, building and establishing a successful support group requires an investment of time and energy, but the rewards of providing a supportive community for those impacted by prostate cancer can be immense.
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Communication & Dealing with Difficult Scenarios
Communication levels can be divided into three categories:
1. Facts, e.g., "I have been diagnosed with stage II prostate cancer." 2. Thoughts and beliefs, e.g., "I think I can beat it." 3. Feelings and emotions, e.g., "But I'm afraid I won't."
As listeners, we pay attention to the level we think is most important or the one we are most comfortable dealing with. It may not be the same level of communication that the speaker intends to convey, which can lead to misunderstanding and hurt feelings. It is important to remember that there is a difference between hearing the words and listening for the message. For instance, if a participant is telling you how he feels about the diagnosis and you don't acknowledge the feelings, they may feel as though he has not been heard. The following section can help you further develop your communication skills. Don't worry if it doesn't make sense right away. You might take bits and pieces and practice them in conversations you have with participants or anyone else!
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Active Listening 101 Successful support group leaders show concern and exhibit an openness that translates in person and over the phone. They are also familiar with and use active listening skills. Active listening skills let the program participants know you are listening and that they are understood. The following techniques can help you take what you heard and return it to program participants for confirmation.
Techniques used in active listening*
Statement
Purpose
To do this
Examples
"Can you tell me more?" "I'd like to hear more about that."
Shows interest, encourages the conversation
Don't agree or disagree; Use neutral words
Encouraging
Helps you better understand and get more information
"How did that happen/ work/come up?"
Ask questions
Clarifying
Shows you are listening and understanding properly; Checks your meaning and interpretation
"I thought I heard you say..." "So you would like to know more about coping strategies. Is that right?"
Restate basic ideas, facts
Restating
Shows that you understand how they feel
"You seem quite upset about..."
Reflect their basic feelings
Reflecting
Reviews progress; pulls important ideas, facts and feelings together
Restate the major ideas expressed, including feelings
"These seem to be the key ideas you have expressed..."
Summarizing
Acknowledge the value of their issues and feelings; Show appreciation for their efforts and actions Offers other opinions; Ask questions; Offer ideas or suggestions
"I think I understand why you would be confused." "You have every right to be angry/sad/disappointed."
Acknowledges the worthiness of the other person
Validating
Continues to develop the conversation
"Have you considered...?"
Building
* Revised and used with permission: Decker, Bert. The Art of Communicating: Achieving Interpersonal Impact in Business. Mississauga, Ontario: Crisp Publications 1988.
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Communication & Dealing with Difficult Scenarios
Dealing with Strong Emotions and Difficult Scenarios As you know, dealing with a prostate cancer diagnosis brings up a wide range of emotions. The degree to which these emotions are expressed may vary, and participants may express emotions in ways you might not entirely understand or feel comfortable with. Here are some ways to help you deal with a highly emotional participant. Anxiety and Fear: You may well remember the anxiety and fear you felt when you were diagnosed, and you understand there may be many reasons to worry. In addition to treatment decisions, potential side effects, and wondering what to do if treatment doesn't work, many cancer patients also have family, work, and financial stressors with which to deal. • Practical Matters: Help by referring them to our ZERO360 case-management program for practical matters such as insurance issues, applying for benefits, and helping to access any available financial assistance. As a Peer Support Volunteer, you are not responsible for providing in-depth assistance with these matters. Encourage participants to access ZERO360, and don't forget you can always call us or refer participants to us for additional guidance if you are stuck! • Emotional Matters: It is, of course, perfectly natural for a person with prostate cancer to feel anxious and afraid. For some, talking may help. Talking may overly agitate others, and finding a distraction may be the best bet. For everyone, hearing your story and how you've managed may be just what they need. Depression and Grief: Sometimes, the treatment team assumes that being depressed is a normal part of the cancer experience. This does not mean that participants would not benefit from professional help. There is also often a sense of grief and anticipatory grief for patients diagnosed with prostate cancer. Many things can change when someone is diagnosed with cancer. Grief reactions may be prompted by the loss of health and vitality, sadness over choices made or not made, and overall grief about the loss of the person they were before their diagnosis. As a Peer Support Leader, it is not your responsibility to assess the mental health needs of participants. However, if you sense that someone is really struggling, it is appropriate to suggest seeking professional assistance, whether through a counselor, pastor, therapist, or psychiatrist. If you received help with your own emotional needs and feel comfortable discussing it, please share that part of your story. Anger: Anger is often a response to being diagnosed with prostate cancer. The person may be angry with himself, someone else, or another entity. However, sometimes, when people are very angry and not coping well, they raise their voices, become abusive, and use curse words. Being angry is okay and understandable, but yelling and swearing are not. In the rare event that you find yourself on the other end of a person who is intensely angry, ask him to calm down so you can continue to talk. If the participant cannot do so, it is important to recognize that the conversation is no longer productive and might need to end. Let the person know and suggest another way or time to communicate. Please also contact us if you need assistance.
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Crying: As you might expect, tears are not unusual when talking with someone about prostate cancer. Crying can be a great release and is probably something you can relate to. It should help to let the person know that you understand the difficulty of the situation and that you respect him for sharing. If the person begins to sob uncontrollably and you cannot comfort him sufficiently, it may be appropriate to give them space to calm down and connect at another time. Ask the participant if they have support from someone before ending the meeting. Check to see if there is someone else at home who can provide support or if there is a friend he can call. Guilt and Blame: For a variety of reasons, guilt and blame often accompany a diagnosis of prostate cancer. A participant may be concerned with the "could have, should have, would have" surrounding the diagnosis or loss. They may be focused on negative thoughts they may have had, feel as though they could have done something different, or be looking for someone to blame. It may be helpful for them to share these thoughts and concerns with you. You can acknowledge their feelings and respect them for sharing. It is important to remember that your role as a Peer Support Volunteer is not that of a professional counselor and that it is okay to suggest seeking professional help.
It cannot be stressed enough: As a Peer Support Volunteer, you are not expected to replace professional counseling.
What if a participant mentions self-harm or suicidal ideation?
If someone you're supporting mentions self-harm or you feel that he could be in danger:
• Be respectful and acknowledge the person's feelings.
• Communicate that you take him seriously and want to do everything you can to keep him safe.
•
Encourage the person to seek treatment.
• Encourage the person to call a suicide hotline number.
• Never promise to keep someone's suicidal feelings a secret.
Potential helpful phrasing
"I'm glad you trust me to share this. As a Peer Support Volunteer, we aim to get you the best help possible for prostate cancer. This is beyond what I am able to help you with, as I am not a mental health professional. So, I'd like to share these resources with you to connect you with someone who can help."
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Communication & Dealing with Difficult Scenarios
Refer him to these helpful resources:
National Suicide Prevention Lifeline (available 24/7)
•
1-800-273-8255
•
https://suicidepreventionlifeline.org/
Crisis Text Line (available 24/7)
• Text HOME to 741-741 to text with a trained crisis counselor from the Crisis Text Line for free
•
https://www.crisistextline.org/
The NAMI HelpLine (National Alliance on Mental Illness)
• Can be reached Monday through Friday, 10 am – 6 pm, ET.
•
1-800-950-NAMI (6264) or info@nami.org
Monitoring Group Relationship Dynamics and Addressing Concerns:
• Observe the group dynamics and interpersonal relationships among participants.
• Be proactive in addressing any potential conflicts, misunderstandings, or concerns that may arise.
• Foster an environment of mutual respect and open communication, where participants feel comfortable expressing their thoughts and feelings.
• If necessary, consider implementing group guidelines or ground rules to maintain a positive and supportive atmosphere.
• If a scenario arises where you need additional support, email us at supportgroups@zerocancer.org .
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Safety and Setting Group Boundaries
Establishing and maintaining boundaries within your support group is crucial for creating a safe, supportive, and encouraging environment for members. Healthy boundaries promote productive discussions, foster a sense of belonging, and contribute to the overall well-being of the group.
Setting Group Boundaries
Here are some suggestions for setting effective group boundaries:
• Prepare and Delegate Responsibilities: Come prepared for each meeting with a clear agenda, topics, and materials. Delegate responsibilities among group members to encourage active participation and shared ownership.
• Start on Time and Set Expectations: Begin each meeting promptly and set boundaries from the outset. Establish guidelines for introductions, sharing time limits, and respectful communication.
• Facilitate Structured Discussions: Facilitate group discussions or invite guest speakers to participate. Implement practices that prevent interruptions, such as designated times for feedback and discussion, and encouraging members to raise their hands before speaking. • Manage Dominant Personalities: If a member frequently interrupts or dominates the conversation, politely interject and remind them that others need a chance to share their thoughts. Discuss conversational habits with the individual both during and after meetings. • Maintain Confidentiality: Remind the group that what is shared within the support group stays confidential. Maintaining confidentiality is vital for building trust and creating a safe space for open and honest discussions. • Re-energize and End on a Positive Note: Develop strategies to re-energize the group and end meetings on a high note. This can help counterbalance heavy or emotional conversations and leave members feeling uplifted.
• End Meetings on Time: Formally announce the end of the meeting and ensure it concludes at the scheduled time. This respects everyone's time commitments and sets clear boundaries.
• Seek Feedback and Adjust: Regularly seek feedback from members regarding the group dynamics and boundaries. Be open to making adjustments to ensure the boundaries are effective and meet the needs of the group.
By implementing these strategies for setting and maintaining group boundaries, you can foster an environment that encourages active participation, respectful communication, and a sense of belonging.
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Safety and Setting Group Boundaries
HIPAA and Privacy: What You Need to Know as a Peer Support Volunteer
What is HIPAA?
As part of providing the highest quality service to those who attend our support group meetings, we keep information about their health private. HIPAA covers ALL forms of protected health information: oral, written, and electronic. We are legally obligated to keep this commitment.
How am I involved in HIPAA?
It is everyone's responsibility to take the confidentiality of participant information seriously. Anytime a peer support volunteer comes in contact with patient information (or any personal health information) written, spoken, or electronically transmitted, they become involved in some facet of HIPAA regulations.
What is Protected Health Information (PHI)?
According to HIPAA, any one of the following information can be used to identify a patient:
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Name
Telephone/fax numbers
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Addresses
Email addresses
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Treatments and medications received
Information about past health conditions
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Dates
Social Security Numbers
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Medical records numbers
Patient account numbers
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Insurance plan numbers
Vehicle information
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License numbers
Medical equipment numbers
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Photographs
Fingerprints
Any health information that identifies someone or can IS PROTECTED. This means you cannot pass along any of this information without patient authorization.
For example, you cannot discuss any patient information with your coworkers, family, and friends. Remember, mentioning any one of the above information points is a possible HIPAA violation.
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HIPAA Violations
Violations of HIPAA include possible legal and financial punishments for anyone caught violating patient privacy. Those who do so for financial gain can be fined as much as $250,000 or spend as many as ten years in prison.
Questions about compliance
If you have further questions regarding compliance, please contact us at education@zerocancer.org .
Helpful Tips to Comply with HIPAA
• Never post information or details about a conversation you had with a program participant on any social media platform, regardless of your security settings.
• Do not share participant information to prayer lists (unless they specifically told you to add them and gave you their information to do so).
• If leaving a voicemail, leave only your basic information.
Do not mention ZERO, prostate cancer, prostate cancer support group, etc.
Since we do not know who has access to the voicemail we don't want to share information that could lead someone else to finding out a person's diagnosis
Example voicemail: "Hello, this is John Smith trying to reach John Doe. Please give me a call when you have the chance"
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Self-Care
Ensuring the Mental Health of the Support Group Leader You have joined an amazing program that provides support to numerous people dealing with prostate cancer every year. We can't do it without you. We also know that you will need certain things from us, including:
• Provide up-to-date information that will be useful to you and the participants
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Other information when you request it
• Give you the time you need if you have to take a break, and we will welcome you back when you are ready
• Review your own support options, including getting you into a support group if your health situation changes and you decide you need social support
Managing Stress and Compassion Fatigue
What is compassion fatigue?
Compassion fatigue may develop as a result of being a Peer Support Volunteer. This might happen because participants will discuss problems with you that you cannot fix. Sometimes, we don't notice compassion fatigue right away, but it will eventually build up if we don't take time for ourselves.
How do I manage compassion fatigue?
Everyone deals with stress differently. Some people like to talk about their feelings in a group setting, while others prefer physical activities. There is no right way to relieve stress. Some things that you may consider are:
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Yoga
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Meditation
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Art
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Exercise
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Knowing When to Take a Break
We recognize that each support group leader is an individual and needs change over time. We trust your ability to determine what you can manage and when you need help.
If you have a recurrence or disease progression, you may decide to hold off on leading your group for a time. You may even feel the need to join another support group to help YOU. Or you may choose to continue leading as in the past while you begin treatment again.
Sometimes, a totally unrelated health issue comes up, or you have something else going on in your personal life that needs to be addressed.
We recognize that each leader is an individual, and your needs change over time. We trust your ability to determine what you can manage and when you need help. We can help you find a co-leader or temporary replacement until you feel ready to return. We are here to assist you.
Continued Facilitator Training and Development:
• Review all videos Support Group Leader Training .
• Attend ZERO's in-person annual training that is intended to provide development opportunities for support group leaders.
• Attend initial VIRTUAL Group Training for new leaders.
• Stay updated on best practices, facilitation techniques, and relevant information related to prostate cancer and support group management.
• Engage in self-reflection and seek feedback to improve your skills and enhance the overall support group experience.
Collaboration and Resource Sharing:
• Establish connections with other support groups, healthcare professionals, and community organizations working in the field of prostate cancer.
• Share resources, best practices, and insights to strengthen the collective efforts in providing comprehensive support.
• Explore opportunities for collaboration, such as joint events, guest speaker exchanges, or resource sharing.
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Succession/Transition Planning
It will be important to think about developing a succession plan to ensure the continuity of the support group in case of leadership changes or transitions. Implement strategies to attract and retain new members, ensuring the long-term sustainability of the support group.
a. Identifying Potential Successors
Here are some ways to provide succession planning for support group leaders:
• Identify potential successors early and get them involved. Encourage members who show leadership potential to take on roles like greeting new members, moderating discussions, or coordinating outreach events. This gives them experience and visibility.
• Pair up newer members with more experienced leaders who can teach them the ropes and prepare them to eventually take over leadership roles.
• Make sure outgoing leaders write down information about processes, contacts, and other important institutional knowledge to pass on to their successors.
• Invite new potential leaders to ZERO’s Annual in-person training events focused on developing leadership skills.
• Establish transition timelines. When existing leaders plan to step down, provide sufficient notice (6 months to a year) so the group has time to prepare new leaders.
• Rotate interim leaders. Have potential successors take turns filling in as group facilitators when existing leaders have schedule conflicts. This gives them a trial in the leadership role.
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