Offering online support groups in hospice and palliative care: A step-by-step guide
As we all work together to prevent and respond to the spread of COVID-19, many hospice and palliative care (HAPC) providers are being asked to provide psychosocial support at a distance. We have heard from several of our HAPC colleagues who would like to offer online support groups for patients and their families, but don’t know where to start. At the Lab for Caregiving Innovation and the Hospice Caregiving Research Network, we’ve been running online support groups as part of federally-funded HAPC research for many years, and we’ve learned a lot. We’d like to share some of those lessons with the rest of our HAPC community as we all navigate uncharted territory together. Below we offer a step-by-step guide to starting and running an online support group in HAPC. You will need to adjust the steps to fit your own circumstances and the needs of the patients and families you serve, but they will give you a place to start.
Step 1: Start where your people are
First, you’ve got to choose a platform for your online support group. We’ve found it difficult to keep people involved when we’ve required them to access groups via a separate app or platform beyond what they’re already familiar with. We’ve been much more successful when we’ve offered groups via social media platforms people access as a routine part of their lives. Facebook has worked best for us. We’ve found it to be the most useful and easy to use, both from our perspective as group facilitators and from the perspective of group members. Particularly in the past few years, Facebook has really leaned into the idea of serving as a platform for online groups, and they’ve introduced numerous tools to support users in this way. In many respects, the technical infrastructure for online support groups is ready-made if the groups are offered via Facebook. When choosing a platform, be sure to get to know your target population and the social media they’re already using. Many in the HAPC community are aware of how useful Twitter can be for sharing information and support, and there are more and more support groups cropping up on Instagram every day. Facebook is a great option, but it is certainly not the only one.
Step 2: Get permission
Very importantly, using existing social media to host your online support group introduces a number of serious privacy considerations. Most social media platforms are not HIPAA-compliant and, while you can typically control group membership and privacy settings, you will be unable to fully ensure user confidentiality. Therefore, if you are offering an online support group in your official professional capacity, formal approval and support from agency leadership is essential. Informed consent of patients and families is a must. Users must understand the privacy issues inherent in the online exchange of information so they can make the right decision for themselves. We’ve had group members participate at many different levels. Some just “lurk” and don’t actively participate. Others post several times a day, sharing very intimate parts of their lives. All aspects of participation represent informed decisions, and we are committed to respecting those decisions.
Step 3: Develop group rules (and enforce them)
Just as with face-to-face groups, rules are essential in online support groups. Because patients and families often receive hospice services for brief periods of time, our group administrators are regularly helping people enter and exit our groups. As a result, we don’t usually engage group members in the development of the rules. We invite user input and questions, but we’ve taken this on as a responsibility as group facilitators. We post the rules monthly as a reminder to both existing participants and new members. Many of the rules are similar to the rules you’d have in a face-to-face group (Facebook also provides some great ideas). Enforcement of the group rules is critical. While we have not had to remove anyone from our groups for rule violations, we have had to stop conversations that began to infringe.
Step 4: Post content
There are lots of ways to get group members interacting online, but we’ve found the best way is to post content and invite members’ responses. Particularly in groups that are just getting started or (as is the case for us) where people are members for shorter periods of time, much of this responsibility falls to the facilitator. We have an entire article about what types of content we’ve found to be most engaging, but the condensed version is that emotional content tends to be more engaging than informational content. Things may be different now in our new reality of COVID-19, but in our analysis of over a year’s worth of data that reflected hundreds of hours devoted to developing very sophisticated informational content for hospice family caregivers, we found that simple, emotionally-oriented questions (e.g., “How is everyone coping today?”) gained the most traction. Keep in mind that there’s no need to develop your own informational content. We did because we’re running a large, federally-funded clinical trial, and we had the resources to do so. But all the professional organizations you’re already familiar with have content that patients and families may find useful. Just make sure it’s vetted. There is terrible information out there, even from organizations that should know better. So read every word before you post it, and if the content is outside of your scope of practice, have someone else sign off on it. Providing trustworthy information is key, particularly in moments of crisis.
Step 5: Manage the tone
Seriously ill patients and their families are dealing with some heavy stuff. Support groups are a highly appropriate space for members to share their challenges, burdens, and feelings of sadness, anger, and fear. But the heavy stuff is just one aspect of people’s experiences. Group members also seek content that is uplifting, inspirational, or even funny. We’ve learned to purposefully post this type of content in our groups from time to time. For example, in our hospice caregiver support groups, it’s not uncommon for members to share their family member’s obituary when they die. At several different points in our groups, it has seemed like deaths have come one right after the other, and group members have commented on the emotional toll associated with being in the group at those times. Pay attention to the emotional tone of your online group, and take an active role in calibrating the tone when needed. But beware: This can be tricky. Reading lighthearted content posted in the midst of someone’s most difficult moments can feel invalidating. We have addressed this by creating specific moments in the group (e.g., “Silly Saturdays” or “Supportive Sundays”) when—as a group norm—we are intentional in sharing content that is humorous or inspirational. Humor can be particularly tricky. We are all so different, and what one person finds funny can hurt another person’s feelings or reinforce harmful stereotypes. Run the jokes by a few people before you post them—the more diverse your reviewers are in terms of life experiences, the better.
Step 6: Make connections
At times, our groups are really firing on all cylinders. Members are connected, posting their own original content, and regularly interacting with one another. At other times, members are less engaged, and our facilitators take a more active role in linking members to one another. In our Facebook groups, we often link to members by using the tagging feature in Facebook, explicitly inviting individuals to respond to another member’s post. We also formally welcome all new members to the group with a welcome post in which they are tagged and invited to share a little bit about themselves. As is true when face-to-face, group interactions aren’t one-on-one interactions with an audience. Making peer connections is key.
Step 7: Stay in your lane
Some of the questions members pose in our online support group should be addressed by health care professionals, and we regularly direct group members to the appropriate member(s) of their care teams to address specific topics, especially when questions pertain to specific pain and symptom management concerns. We want to be clear: In our work, online support groups are not intended to be a substitute for the care provided by hospice or palliative care teams (that may be different for you, depending on your circumstances). Further, while all our groups are professionally facilitated by trained mental health professionals, they are not designed to provide crisis intervention. They’re not monitored 24/7, and we’re very clear about that in our rules and in our conversations with potential members. Contact information for the national suicide hotline (which also doubles as a general mental health crisis line) is one of our pinned posts in the group. We have no way of knowing whether this will be your experience, but we talk to a lot of people who are considering online support groups, and they are very concerned about how they will respond to people in these types of crisis situations. We have found them to be infrequent and manageable.
Step 8: Support each other
It can be helpful to have more than one facilitator in a group at any time. When engagement is low, it can help members feel more comfortable to engage when there is content coming from several people, even if some of those people are facilitators rather than group members. And we do not have the expectation that the group is monitored 24/7; our facilitators are paid employees, and they obviously have time off, not to mention other work responsibilities. Having a few sets of eyes in the group is helpful in terms of providing additional oversight and making sure the group remains a supportive environment.
At this time, our investigators and staff are working from home, keeping our physical distance from others, and remaining hopeful that a brighter day is around the corner. If you have questions or ideas about online support groups, we are happy to keep the conversation going on Twitter (@caregivinglab) or Facebook (@labforcaregivinginnovation). We thank each of you for the care you provide to patients and their families. Stay safe out there.
Creating a private, hidden Facebook support group
At the Lab for Caregiving Innovation, we offer online support groups for family caregivers using private, hidden Facebook groups. Below, we provide a basic overview of the steps involved in creating groups of this type. To the best of our knowledge, this information is accurate as of the date of this document; however, Facebook frequently changes how its groups work, and we learn new things every day. We will be periodically updating this document to reflect our new learning. If you run into technical challenges or have specific questions, we recommend that you visit the Facebook Help Center for support, as it will have the most current information available to assist you.
Step 1: Create a Facebook account.
If you will be offering an online support group in your professional capacity, we recommend that you first create an individual Facebook account separate from your personal Facebook account that will serve as the primary group facilitator account. This helps maintain personal-professional boundaries and will allow for continuity of care in the event that you leave the group at any point—just make sure your supervisor or other appropriate individuals at your agency also have the login information for the account.
Keep in mind that you’ll need a valid email address to set up the account. Request an email account for the group that is separate from your individual professional email account (e.g., email@example.com) if your agency is able to generate one for you, and use that email address to create the Facebook account. Make sure your supervisor or other appropriate colleagues have the login information for this email account in addition to the Facebook account.
When creating the facilitator Facebook account, you will be required to enter demographic information for an individual. In most respects, we haven’t found that it matters what you enter into those fields. Generic information (e.g., date of birth = 01/01/01) mostly works just fine. However, you should put some thought into the first and last names you choose for the account. We’ve used non-identifying names (e.g., Group Facilitator) for some groups and actual names (e.g., Alexis Smith) for others. There are pros and cons associated with each approach. At least anecdotally, it seems like group members are more reluctant to engage with non-identifying accounts and, at least in the past, Facebook has been particular about which names it allows accounts to use (presumably in an effort to weed out robots and other bad actors). On the other hand, when we’ve used actual people’s names, those individuals have received friend requests from individuals in their personal lives who have seen the new account in their list of recommended friends. Our facilitators decline any friend invites they receive, but this sometimes necessitates additional communication with the requester(s). There’s not necessarily a right or wrong approach to naming the account, but we recommend you spend some time thinking about what is likely to work best for your group.
Step 2: Create a new group.
Log in to the primary group facilitator Facebook account. Then click Create (located in the blue bar at the top of your computer screen). Select Group. A box with several options will appear. Go ahead and name your group, but do not add people at this time (just skip that step). Set privacy to Private. This ensures that only group members can see who is in the group and what they post. Set group visibility to Hidden. This ensures that only group members can find the group when searching.
Step 3: Prepare the group.
Your group now exists, although there are no members. Go on in! Add profile and cover pictures. Post your group rules. Generally, make yourself at home and get comfortable with the features of your group. Then double check that all of your rules, pictures, and any other documents you wish to provide are in place. Now you will be ready to add your members.
Step 4: Add your group members.
Remember: Facebook is not HIPAA compliant. If you are offering a Facebook support group through your place of employment, getting your employer’s permission is imperative (be absolutely certain to follow all applicable organizational policies). Most health care or social service agencies (and most professional codes of ethics) will require that group members provide informed consent to join. Informed consent means anyone joining the group has learned about and understands the purpose, benefits, and risks of the group, and then agrees to participate.
The information you provide to individuals considering joining the group should clearly explain that you cannot guarantee members’ privacy. If someone is interested in joining the group but is worried about privacy, you can offer them several options to decrease the likelihood their privacy will be breached. For example, they could create an account to use specifically for the group. Or they could use a pseudonym or select a more generic profile picture that doesn’t include an identifiable image of their face (e.g., a meaningful symbol or an avatar). But, at the end of the day, neither you nor your agency own the information members provide; Facebook does. And, as is true in face-to-face groups, while you can stress the importance of privacy and ask members to honor group rules to keep information private, you ultimately have no control over whether they actually do so.
Members will need to have their own individual Facebook accounts to be invited to join the group. From your facilitator account’s News Feed, click Groups in the left menu and select the group you’d like to invite new members to. An option to Invite Members will appear on the right side of your screen. Enter the person’s email address to invite them to the group. This mustbe the email they use for their Facebook account. This may or may not be the email account people check most often, so be sure to confirm you have the correct email before you invite them. Also, we have found that you have to type in the email address. Copy and paste does not work.
If the person you’re trying to invite to the group has forgotten which of their email accounts is linked to their Facebook account, you can help them locate that information in their Facebook settings. If they are accessing Facebook via a computer, assist them in locating the small arrow next to the question mark in a circle (i.e. the Quick Help button) near the top of the page. When they click on the arrow and select Settings, their email address will be listed as a primary contact. On a mobile phone, this is found under Menu – Settings – Personal Information.
If, for whatever reason, an individual who would like to join the group is unable to receive an emailed invitation, you do have another option. If the person’s Facebook account and your group facilitator’s Facebook account are “friended,” then the person can be invited. We’ve found it’s easiest to ask the person to locate and “friend” the group facilitator account rather than the other way around. We email the following instructions to assist: “My name on Facebook is Alexis Smith, and I am wearing all black in my Facebook picture, standing in front of the Colosseum. I have attached a screenshot of my page for your reference.” Once the two accounts are friended, you’ll follow steps that are very similar to the ones you would follow to invite people using their email address. First, click on Groups in the left menu and select the group you’d like to invite the person to. When the option to Invite Members appears on the right side of your screen, instead of entering an email address, begin typing the name the person uses for their Facebook account. Facebook will locate the person from your list of friends, and you can simply click on their name to invite them. Our policy is that group facilitator accounts do not maintain “friendship” status with any other accounts, so the group facilitator “unfriends” the person’s account as soon as group membership is established.
As members join your group, Facebook will prompt them to invite members from their existing friends. This may or may not be appropriate, depending on the type of group you are creating. You will want to put some thought into how you would like to handle this prior to creating your group. Facebook allows for the group administrator to accept or to deny the request so that you can remain in control of group membership.
Step 5: Your group is now up and running!
We have learned so much about how to create engaging spaces in our online support groups. We wish you the very best in your endeavors.
LCI example Facebook group guidelines
Hospice Caregivers Support Group
Rules of Conduct
These rules have been developed to ensure that conversations in the Hospice Caregivers Support Group are respectful, supportive, and in line with the group’s goals. By accepting membership in this group, you are agreeing to abide by these rules.
- Respect your fellow Facebook group members. Comments of a disparaging nature directed at other members or moderators will not be tolerated. Members who violate this policy (and/or the various rules of etiquette that follow) will be formally asked to stop, and their page access will be revoked if such conduct continues.
- Strong language and vulgarity are prohibited. Using asterisks or other symbols in place of letters generally does not make a word okay to use. Please use common sense and courtesy. If you wouldn’t say it in the workplace, you shouldn’t say it here.
- No personal insults to others.
- We request that you refrain from topics that can be difficult for others to respond to. These topics include but are not limited to suicide, self-injury, physical or sexual abuse, and drug or alcohol abuse.
- No fundraising and/or “go fund me” posts allowed.
- Honor one another’s privacy by keeping group members’ posts and comments confidential. Because this is a Secret Facebook group, regular “sharing” features are disabled. If you would like to share general educational materials outside of this group, you will need to copy and paste the web address into a new Facebook post outside of the group page. Again, posts with members’ personal stories, thoughts, and feelings should never be shared outside of this group.
- Members have the right to refuse to give out any and all personal details.
- Do not give medical advice based on your training or personal experience. Medical advice should only be given by the hospice staff. You may suggest that medical questions be asked of the hospice staff and support participants to do so.
- This group is not intended to facilitate romantic relationships. If a member of the group requests to be “friends” through the regular Facebook forums, it is the right of any member to decide to accept or ignore this request.
- You may be asked to change topics if the topic is controversial and is creating a great deal of arguing in the group. Religion is one example of such a topic.
- Jokes that are racist, homophobic, sexist or otherwise offensive are not permitted.
- This group is not an appropriate resource to utilize in case of an emergency. It is not monitored 24/7. Please contact your hospice team or other appropriate support service to address urgent or emergent needs. Keep in mind that your hospice team is prepared to assist if you are feeling distressed and would like extra emotional support. If you would rather speak with someone anonymously, you can reach a national crisis hotline at 1-800-273-8255. The hotline is available 24/7 to provide free and confidential support.
- If a group member is deemed to have such complicated concerns that it is detrimental to the rest of the group, a group moderator will privately talk to them and refer them to additional assistance. They may be asked to leave the group if such concerns cannot be adequately addressed.