Virtual Best Practices



Virtual Best PracticesIntroductionGroups across the world had been running virtual/phone support groups and meet ups for years. The rise of access to technology and technology advances combined with the convenience of a conference call, adolescents playing interactive video games, “chatting” on a computer with minimized social risk, etc., have led to an increased wave of “virtual” experiences. COVID-19 has turned these “options” into “demands.” Epilepsy Foundation New England has been working hard to determine best practices for the what, when, who, and how of safely and effectively bringing our community together in the virtual word. The first goal of Epilepsy Foundation New England is to build community.The first goal of Epilepsy Foundation New England at all events is to build support through community. This remains true in the virtual environment: we need to build connections between our community members. During face-to-face events, the many facets of body language can support or detract from connections and can help group facilitators read group dynamics and provide supportive interventions. During groups where members are present, handshakes and hugs provide comfort. Where participants choose to sit provides information to other participants and the group leader. Virtual interaction relies hugely on cohesion by conversation. Effective preparation, support, and follow up by the facilitator is even more critical in the virtual environment. When planning groups, we begin by asking our team these questions in order to effectively do the above. Define the Virtual ProgramWhy are you organizing the event?? Why is the event important? Are you replacing a cancelled camp or annual organization tradition?Are you trying to create a fundraiser or replace a revenue producer?Are you trying to fill a community need as a social service?Are you educating the community on treatments current treatments or procedures?We run programs that are meaningful to our community. We strongly suggest that you not schedule a group for the sake of scheduling a group or to have programming… it will not be successful or meaningful and therefore will not allow your audience to connect. Understand the value your organization has in your community.Each organization needs to listen to the needs in their community, if it is being filled, and where they can best serve their population vs. redirect qualified resources. For example: When the stay at home order was placed in New England we realized many of our clients relied upon school time or aide supported interactions as their only opportunity to socialize. We immediately used our existing Young Leaders Network and Purple Camp to put multiple daily virtual groups into place. The value of our organization is social support and community; not education or medical advice. Two months after we began, we reassessed our programs using an independent contractor who administer brief surveys about meeting times, frequency, programming, and satisfaction. Outcome data helped us refine our virtual programs and services. Reasons to Develop Virtual Programs: Increase social support during a period of isolation. Provide socioemotional support to decrease depression and anxiety during a period of isolation. Provide information and education for self-care (e.g., Making the Most out of your Telehealth Visit)An expert in the community, like an art therapist, has virtual group skills and another skill/knowledge to share. Observable trend in the type of client reaching out to your organization, triggering the need for a specific program (e.g., Men ages 18-25; Families who have a rare and specific diagnosis such as Sunflower Syndrome; Teens who have had their head shaved in preparation for neurosurgery that has been postponed). Your organization is building a relationship with another hospital or organization that will benefit patients Your organization has the opportunity to develop a constituency in a specific geographic area you’re your organization is not able to serve with “in-person” services. You are teaching a skill that will benefit patients ability to care for themselves (how to use telehealth, how to use a pill box)Who is the target audience? ?We began targeting programs to broader swaths of the community and then narrowed our foci as the groups grew and defined themselves. For example, we started with a regular support group for adults, then added a Book Blub, and then added a Book Club for women. Is your focus developmental age range? Specific diagnoses (Brain Tumor, Autism)? What is the audience demographic? This determines the planned length of each session/program. More severely affected individuals will be successful in smaller teams in shorter duration, with established group rules, turn taking, and structured experience activities with breaks.Groups focused on building social connectedness for higher functioning people may be scheduled for longer duration or may have a soft end time where the opportunity to depart is offered but further “chatting” or an informal follow up is allowed. Groups expecting many “new” members (youth, adult, or parent) might benefit from recruiting similarly-aged volunteers who have previously participated in the program and are prepared to assist in helping engage new members – by 1:1 welcome to the group, offering support on how to access the group, and chatting with the new member on “what to expect.” Ideal group size. The “magic number” depends on the audience and meeting content; every group member should have an opportunity to participate in a meaningful way.In groups where the average developmental age range is younger, the “magic number” is less than 4. Taking turns, listening, or waiting to talk are difficult skills in in-person events. In the virtual environment, lack of staff feedback, lack of nonverbal clues, and additional distractions (e.g., the barking dog), make successful participating even more difficult. In groups of adults, parents, or teens where there is familiarity (i.e., the participants already know one another), groups of 12-16 are meaningful and energetic. For structured presentations (i.e., online conference of 100; webinar for 50), we recommend: Use Zoom webinar or Go To Webinar instead of Zoom meeting or Go To Meeting. The webinar feature allows all participants to be in listen only mode with webcams hidden. Be sure to have at least two staff controlling the meeting so that if one person looses internet or has another emergency, the program can continue. Having two staff allows at least one person to monitor the “chat” feature. An organizational staff or volunteer Should engage the participants who are chatting while the presentation is occurring, such as answering questions or offering to get back to the participant after the presentation with follow up information. Ideally, the presenter(s) will provide their slides in advance. This makes the program Much more successful and avoids presenter challenges with technology, files, screensharing, etc. Breakout rooms are only available on zoom Meetings. These can be used to segment large audiences – for example, large camp groups could use the breakout rooms to segment participants by developmental age to conduct an activity (e.g., writing a poem) after the activity is introduced to the larger group. Scheduling: What time of day are the attendees online?Avoid mealtimes, specifically with school-aged children or parents.Older clients with cognitive challenges tend to be more successful earlier in the day - before noon.Reassess frequently – convienient times change seasonally. For example, in the time of the pandemic, our children’s programs were most popular midday. As schools created online programs, youth programs moved to later in the afternoon and into the evenings. As the weather is becoming warmer in New England, we encourage outdoor activity and plan to move many of our meetings into the evening. What is your content?Conferences or WebinarsWhat do families and adults need during the pandemic. Our most successful programs have been How to Make the Most of Your Telehealth Appointment (taught by two doctors) and a mini-conference on Managing the New Normal: Strategies for Self Care. Social Groups and Virtual CampsFor our youth social groups, survey data showed that a majority of our participants participate in virtual groups to connect regardless of activity offered.Social group event content does not drive people to sign-up, but can motivate initial interaction (“I want to learn how to make brownies”) - and can occasionally deter (“I have no interest in Hip Hop”). Content should be age appropriate and audience driven. Peer led (with support) activities are popular among teens and adults. For example, we have had our young people teach bracelet making, makeup application, and cooking. If everybody does not actively participate during the first meeting or their first meeting, that is ok, continuing to show up and increase engagement with time is a positive spectrum. Many of our clients’ early participation includes not wanting to turn on their camera, then turning on their camera but only watching, and finally engaging in the activity. Connections between meetings are critical to facilitating initial engagement. We work to offer activities that encourage healthy habits and/or provide some education. We don’t want kids, teens, or parents sitting in front of the screen all day. Encouraging and potentially TEACHING video games, for example isn’t necessarily a positive goal. We are working on teaching clients to download a social platform onto their phones so they can go outside together (e.g., a scavenger hunt). Cooking has been a huge success. Our kids have continued to cook and make meals independently throughout the week and share them with encouragement. This is also an educational opportunity for healthy eating (brownies, with substitutions) or keto recipes. Painting rocks and hiding them with a common hash tag gives an opportunity for the group to take turns sharing their interest and also encourages getting outdoors (walking to hide the rocks). Unstructured time is ok too. While the majority of our groups have topics, we reserve 1 youth and 1 parent group a week as an unstructured social gathering. A Team-based Strategy for Foundation servicesThe goal is success! In which group will the client be most successful? Should you refer to client to a different group inside or outside of your organization (even if it means your group will be smaller)? Fostering a client-entered approach builds success for the client and strengthens the credibility of the organization.Success of the group, does a certain client interrupt the flow of the group or clash with another member of the group, making cohesion difficult? Is there another placement or arrangement that can be made?Success of the organization, how does your event align with your organizational strategy? Is your group being held in conflict with another? Is there more than one group meeting a single need or overlap in the community?Our organization has created theme days to create cohesion amongst all groups – for example Mindful Monday. Topics of youth, teen, adult groups as well as our social media are all centered around the idea of being Mindful. Do you need to establish creditability? For example, virtual yoga might not be broadly appealing to our community, but we know that yoga is a beneficial practice for patients with epilepsy. We had an incredible gentleman – a person living with epilepsy and a yoga instructor - join our groups and build relationships with the community before offering yoga sessions (“Yoga with Tim”). The sessions would not have been successful otherwise. Choose your medium based on your goal.There are several different options for virtual programming and the opportunities continue to grow. Choose the platform based on the goal of your group. Pre-RegistrationThere are strengths and weaknesses to asking group members to register prior to group time. Depending on your platform, registration may be mandatory and others, like zoom, may just offer a link option. Pre-registration allows an organization to track RSVPs and collect information or data; it can also be an obstacle, especially for adolescents or older adults. It can also control a crowd but prevent or delay last minute attendees. Can it record your meetings?Recording presentations and allowing access to attendees may be a strength - particularly for attendees with any learning delays or disabilities.Recording groups - with permission - and putting together highlight videos can be a moral booster and encourage continued participation. Does it have chat capabilities?Private chatting is a good way to make sure everybody is involved and has an opportunity to ask a question. Before the group, assign a group leader to the role of managing the chat feature. Paying attention to group conversation and facilitating the chat can be helpful.In some youth groups you may need to use the option of “turning off” private chat between group members if it becomes distracting or negative.Chatting is also an opportunity for members to ask questions without interrupting the speakerIt is an engaging moment for the speaker to acknowledge the participant by name when addressing the questionDoes it have breakout or private meeting rooms?Breakout rooms can be a part of your emergency protocol if running a social or support group.If running a conference or camp, breakout rooms can provide the opportunity to offer choice activities or divide a larger group into smaller teamsBecome familiar with the engagement featuresMost platforms offer free trainings through their websiteAll platforms offer similar, but different features such as polls, group editing tools, etc…There are different settings that allow the host to control things such as “simultaneous speaking” which is valuable for events like sing alongs or just “happy birthday.”Emergency Action Plan“If physical events have hitches, virtual events have glitches”Seizures or medical emergency action planThe EFNE emergency action plan requires 2 identified representatives (staff or background checked and trained volunteers) to facilitate every meeting. Just like an in-person meeting, seizures happen during virtual get togethers and the facilitators need to respond in a way that protects both the group and the individual experiencing the seizure. Depending on your platform, this can include separating the user into a waiting room or a breakout room with a host while a co-host continues to run the meeting. The host can manage the seizure and call an emergency contact or emergency responders if needed. Anticipate technical difficulties. By having a minimum of two co-hosts at different locations, if one loses internet connection or experiences bandwidth problems, the group can continue. Not all participants or speakers are comfortable with virtual technology. Before you let this interrupt the success of your group, conference, or fundraiser consider offering a practice or run through with the speaker. During educational presentations, make sure clear language and visuals with large fonts and high color contrast are used. Consider offering visual materials before the presentations to registrants or offer visuals/recordings following the event for participants with auditory or processing issues. Sites like Vfairs include page narration and allow text character to be adjustedHootsuite offers a blog about inclusive design intended for social media but relevant for all virtual presentation. OutreachEpilepsy Foundation New England’s website is the primary and most important touchpoint for new clients, but not a vital promotional tool. Depending on how updated your organization’s website is and how frequently you are able to update it, you may come up with a strategy such as a highlight video from recent virtual groups and an explanation of who you serve as well as contact on who to get in touch with to learn more.Email Email communication is an art. Tedious and not 100% effective. If you are emailing program information, you are either emailing clients who have had a previous touchpoint with your organization, a bulk of clients who have been sifted and selected as potentially interested in your virtual programming, or you have an established group. In any case there are many obstacles. Make sure you have the correct information (updated and avoiding bounce backs) and are emailing the correct family member (the correct parent, communicating with the child-teen, caretaker). In terms of email frequency, our group has found a single newsletter a week with the entire schedule is the preferred cadence. In addition, we send personalized reminders for targeted families. In the weekly email, we also attempt other best practices such as: continued conversation, highlighting member achievements, “commercials” or promotions for the upcoming weeks (e.g., video brief of karate instructor breaking a piece of wood for karate class or spotify list from drum teacher who will instruct Tuesday), and tips and tricks on how to make technology more accessible and useful. We work to encourage members to connect outside of scheduled group time. It is important that program information come from a single source, such as the Program Director, regardless who may be “running” the virtual group on any given day, otherwise families can become confused. Social mediaBe sure to continuously poll your audiences to have the best understanding of which social media outlets they prefer. This depends heavily on the age but also geographic location and culture. For example, in New England, Facebook is primarily used by parents and older adults (although messenger has added a communication twist). Instagram has gained popularity across all age groups. Snapchat is a communication tool used by high school students or college students. TikTok has gained in popular over the last year along and is currently the most popular tool for connection. right now. Your leadership has to decide what policies best represent the culture of your organization. Epilepsy Foundation New England allows staff to “friend” clients, as long as the staff understand their account then becomes representative of their job (alcohol, language, clothing) and understands what is appropriate to share and what is not. Epilepsy Foundation New England has a single account on every platform and any closed social media groups are moderated by volunteers or parents.Understanding the way each platform is used is the best way to promote and share your virtual programing effectively. Facebook is a good way to list events and share pictures, articles, news, and to host live events. Instagram is used strictly for picture sharing, but is an effective community builder, and tools exist to create Instagram “flyers” which convey information. Snapchat is an opportunity for “continued conversation” but should be monitored by a volunteer. TikTok can be a fun way to give instructions (dance, draw, paper airplanes, joke). Most social media posts are shareable across one another and downloadable.While engaging in the social media world - as an organization, as an outreach tool for your virtual event, and/or to communicate with a group or individuals - is a good idea, posting to Facebook will not guarantee or even necessarily help in increasing attendance. Personal connection, enhanced by social media, is what improves group attendance and experience.Case ManagementThe best way to engage a family or individual in virtual programming is by communicating with them 1:1 – on the phone, through text, via messenger, etc. It is critical to understand client needs by spending time and getting to know them. By building a relationship over time and through multiple platforms, clients become more confident and willing to try and participate in new things. Peer Mentorship and Peer LeadershipPeer and family mentorship and leadership compliment case management as outreach and support tools. Most clients’ first relationship to the Foundation is with a staff person, but a good second step is to find a peer who is involved in virtual programs that might have something in common (age, school, history, location) and to link the clients. A 2 or 3 person 15-20 minute zoom conversation is an un-intimidating introduction to programming and helps with outreach. Youth are much more likely to join virtual services if their peers invite them.Running A MeetingPrepare for a MeetingAlways prepare for a meeting. Access the group demographic and decide on an appropriate meeting size and length.Assign roles to facilitators and make sure everybody knows their role and the emergency plan.Recommend clients download the meeting software at least 30 minutes prior to meeting, just in case they have technology issues that they need to work out. Do a test run with another staff member or friend so you know how everything works yourself if is something new. Send a reminder of the program the morning of the meeting with a copy of the link. Be prepared for clients to ask for the link (despite reminder) several times at the meeting start time.Facilitator Best PracticesMake sure your face has sufficient lighting.Lighting works best in front of your face, not behind.Make sure your face is centered in the video camera.Select the quietest room/location you can find.Turn off anything making noise in the background (TV, radio, appliances).Put pets in a different room or have them in a place where they will be most quiet.When two devices are used in the same room, it produces feedback that affects all group participants.Make sure to nod your head and listen well so people can recognize you are following them, especially new group members may focus on the facilitator.Make sure to be on the call a few minutes early. Redirect the conversation or mute participants as necessary. This may feel rude at times, but it is necessary to manage a good online experience for the group. Avoid allowing a single member to monopolize.The general rule of thumb is the facilitator should talk 30% of the time and listen 70% of the time. In virtual groups you might need to encourage others to participate by using their names or the side chat bar to encourage them to answer questions.You made need to create a plan for participants to indicate they’d like to talk (by raising their hand, for example).During some groups, like business meetings, it is common etiquette to mute yourself when not speaking and this may be necessary. Kids do not like to be muted. They get quite upset and bored when silenced. If it becomes necessary, explain why and make sure to quickly take turns sharing a “spotlight” screen.Make Space for Small TalkJust like in physical get togethers, people arrive both early and late. While it is best practice to start and end meetings on time, social get togethers should be planned for the first 10 minutes of every virtual program. This “cocktail hour”-like time gives the facilitator time to admit and welcome participants, make small talk, and assist those having technical difficulties. You can use this time to introduce people but do not consider this a time for “introductions.”Allow Everybody to ShareEven if everybody knows each other begin by allowing everybody to share. If the group is more than 5, use a yes, no, or closed (one that has a word answer) question that can also be emailed ahead of time. Allow the speaker to be the spotlight sharer. If there is a new person in the group, make sure the speaker states their name and considers having them say “Hi.” Otherwise start the group allowing everybody to share with short, or one word questions – otherwise listeners get bored waiting for their turn. Examples: Who is your hero? What is the first thing you grab in the morning? Beach or lake? Summer or winter? Ona scale of 1 to 5, what is your mood? What is your favorite thing to wear? Welcome NewbiesWhen “the community” becomes established sometimes, just as in physical interaction, it can feel hard be new to the group. Make sure that if new members are expected, that existing members are prepared to welcome them and take turn introducing themselves.- Consider a specific group for members who may be new to your virtual community.- Consider a “welcome wagon” team who follow up with new members after they participate, or who are willing to participate in small group, short zoom meetings to prepare new members with the tools they need to be ready for the book club, cooking group, etc… and let them know what to expect so the new member knows a familiar face and has an additional point of contact.- Follow up with a new member and/or their parent to ask how it went and if there is anything they need. Do not let a full week go by before touching base. 1:1 communication in between meetings and connection is important.Choosing an Activity, Social Group StructureEstablishing a structureless therapeutic space (e.g., a support group) can be important for specific targeted audiences. However, most of our youth, families, and adults prefer social groups, which often evolve into therapeutic conversations. Structured activities and entertainment (i.e., social groups) are better attended, but be ready for things to go differently than planned. The younger the audience is developmentally, the more structure needs to be established and the more clear the rules need to be. Virtual social skills are new to everybody, but taking turns speaking, paying attention when it is not your turn to share, and how to connect to someone in the virtual space is more difficult for this group.Activities that are short in duration and are experiential - such as music, art, dance and drama - are most successful.The “middle school aged” audience or teen groups also enjoy structured activities but need more space for flexibility and may end up doing something unplanned. Be prepared to plan a group that will complete an art project that ends up being a group focused on song sharing. Even parents and adults appreciate themes such as book club or yoga.The more materials or preparation required to participate in a virtual program, the less clients will be motivated or willing to join or prepared to participate. Sometimes it takes members weeks before they are willing to cook with the group. Often they join and watch for weeks. Sometimes you need to encourage clients to go and find markers and paper to do the activity when they are unprepared. Programs that are geared toward exploring creativity are the most popular across ages and genders: video and photo sharing, fan fiction, role-playing, etc. Be creative in how to be social in different ways. How can you get your virtual group outside? How can you get your virtual group moving and active?During an in-person support group, the leader might share less about themselves than they might consider during a zoom meeting. Clients are able to become comfortable with the facilitator through body language and space. During a virtual call, when the facilitator shares personal anecdotes, it helps the participants become more comfortable.Meeting Duration and FrequencyRegular day and times are important for virtual programs because clients know what to expect. Groups that meet weekly can be more successful than groups that meet bi-weekly because the schedule becomes habitual. Additionally, if a member is unable to attend one meeting in a biweekly schedule, they are distant for a month and may feel disconnected. The length of a meeting depends on audience. Developmentally younger and more severely affected clients are more successful in smaller group sizes and with shorter meetings, but regular meeting frequency.Teens and young adult virtual programs often continue beyond scheduled time if allowed. Our organization allows a space after meeting time for members to continue talking without facilitation/facilitators while being recorded and observed from afar for emergency protocol.Adults appreciate a defined start and end time as they are most often juggling multiple schedules/demands and a meeting that intrudes upon other obligations can become stressful. Virtual Groups as a Social Skill for EverybodyMeeting virtually is a social skill most of us are learning. For individuals with developmental delays or co-morbidities who struggle to interact in person, connecting abstractly through a screen may seem impossible. Some tips and tricks are:At home, make sure the individual is taught some of the rules of a virtual meeting (e.g., taking turns) and what to expect (people will continue to appear unexpectedly for the first 10 minutes; we will be able to see most, but only hear some; sometimes the screen will “freeze”).Allow children or others with attention challenges to participate in virtual programs for a designated period of time (following group rules and virtual social norms) and then choose whether or not to continue. Be sure the group leaders are aware and be sure the participant says goodbye to the group at the end of their visit.Ask the participant how they enjoy seeing the screen. Consider allowing them to choose to focus only on one person as the spotlight, even if that person is not the speaker. For some people, especially more shy people, watching themselves on the screen is intimidating. There are options that allow you not to see your own screen. This group might do best by beginning to participate in observation-only mode – progressing to participating with audio and video.Connecting your computer to a larger screen, like a television and mirroring zoom, makes it significantly easier for individuals with attention issues or developmental delays to focus - and for all – to participate in experiential activities like learning to dance. Individuals with anxiety or developmental delays are most successful with experience based activities where they do not have to actively interact with other clients for the entire duration of the program. Non- or less verbal children can still enjoy the interaction by hearing familiar voices, music, stories and tactile activities, especially if siblings or family members are included. Follow Up: Continue the ConversationAs parents and professionals, we are hesitant about the socio-emotional risks of social media, but we are living in a time where our families and our children are isolated. We are creating boundaries for our new normal. Protection, supervision, rules, and developmental discretion are required. However, continued client conversation beyond virtual programs through platforms like Facebook, Instagram, SnapChat, and TikTok are ways for the group to continue the conversation. Our clients have practiced and performed hip hop dances on tik-tok. Most of our clients are using #. Some have shared basketball tricks. Many have shared recipes in a cooking group. Check in and Check upPay attention during the meeting. Did Seth have seizure activity? Make sure you follow up to make sure he is ok. Did another member express concern about Marie being out? Make sure you forward the message and connect them. Did Susan participate a little less than usual? Give her a call and understand why and what is going on. Was a question asked that seemed important? Maybe send a group email and find out if they want to discuss it further at an additional time. RemindersWith so many platforms and links during this time of virtual connection, it is easy for clients to lose the next one or forget a meeting. Regular schedules assist, but reminders will remain essential. There are economical mass texting services. Email or social media reminders may also work well. Our 55+ group requests several reminders up to 15 minutes before the group begins! Virtual Meetings Are the New NormalGet comfortable with what is uncomfortable, and help your clients appreciate and connect to each other in a new way. Temporary social distancing is a new social norm, but for people living with epilepsy, social isolation is not uncommon. Relating to each other abstractly through a screen may seem intimidating or undesirable at first, but we have made some really positive memories. Connecting in between meetings, surveying interests, varying leadership opportunities, and talking through strategies that optimize technology for each family are good ways to continue to encourage families to participate and communities to connect. Indeed, we anticipate the “new normal” (more telework, telehealth, social programs) to be an unexpected benefit to our community as we can now better serve people who don’t drive, who can’t leave their loved one home alone, who live remotely, etc. ................
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