Learning Objectives - Confex

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A Facebook Support Group for Bereaved Hospice Caregivers:

Psychosocial and Technical Lessons Learned

L. Ashley Gage, MSW Megan Mooney, MSW [email protected] [email protected]

University of Missouri

Department of Family and Community Medicine

Learning Objectives 1. Audience members will be able to define Facebook-specific

vocabulary to describe the Facebook tools necessary in creating a secret Facebook group.

2. Audience members will learn how to set up a secret Facebook group to ensure confidentiality and anonymity.

3. Audience members will be able to identify the risks and challenges associated with a Facebook support group, both technological and psychosocial in nature.

4. Audience members will be able to identify ethical issues associated with using a secret Facebook group with bereaved hospice caregivers.

5. Audience members will be able to identify the benefits of using a Facebook group as an online support medium.

Facebook Support Group for Bereaved Hospice Caregivers

• What we did …

– Created a pilot study examining a secret Facebook group for bereaved hospice caregivers.

– Recruited bereaved caregivers from three Midwestern US hospices.

– Facilitated and moderated the group via weekly psychosocial posts and individual conversations.

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Group Members Characteristics

Age (Mean) Gender

Race

Relationship to patient

48.6 Females (11) Caucasian (15)

Spouse or partner (7)

Males (5) Native American (1) Adult Child (6)

Other (3)

Technical Aspects

Facebook Vocabulary

• Timeline: Facebook previously called the Timeline a

“Wall.” This is what other people can see. Users can restrict what certain people see by changing privacy settings.

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Facebook Vocabulary • Newsfeed: This is the “feed” of activity that only

the user can see. This is where the user can see what other people and groups are doing. The user’s friends CANNOT see this feed. The user may see something posted to the group here. That does not mean others can see it.

Facebook Vocabulary

• Privacy Settings: These are the settings that the

user can adjust to control who sees what he or she

posts and what people post on his or her timeline.

Facebook Vocabulary • Notifications: The user can receive notifications of

a new comment or post via email, on Facebook, on a phone, or not at all. The user can change how he or she receives alerts by changing notification settings. No one else can see a user’s notifications.

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Facebook Vocabulary

• Facebook Groups.

– Secret: Only members see the group, who's in it, and what members post.

– Closed: Anyone can see the group and who's in it. Only members see posts.

– Open (public): Anyone can see the group, who's in it, and what members post.

Secret Facebook Group • The Hospice Bereavement

Support Group was a Secret Group. Non-members can’t find these groups in searches or see anything about the group, including its name and member list. The name of the group will not display on the timelines of members. To join a secret group, you need to be added by a member of the group.

Establishing a Secret Facebook Group

• On the Newsfeed, under “Groups” you can select “Create Group”

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Deleting a Secret Facebook Group

Secret Facebook Group

• Adding Members

– In a Secret Group, you must be “friends” with a member in order to add them to the group.

– In a Closed Group, you may send any person the URL of the group so they may request to be added.

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• Protocol for Adding Members

– Admin sends the new group member the URL of the group.

– An appointment time, for a 5-10 minute window of time, is set up so that the admin can change the group to “closed” so that the new member can find the group.


• Protocol (cont)

– Members must request to “Join Group”

– Once this is done, the admin changes the group back to “Secret”.

Secret Facebook Group • Protocol for Adding Members (cont.)

– At this point, new members would have to be “confirmed” by an administrator in order to complete the process. This is done to make sure the public cannot join the group. Once they’ve been added, the group will appear on their newsfeed.

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Set up a time for the new member to join the

group.

Send the new member the URL address for the

group.

Set the group to “closed” at the

appointment time.

The admin must then confirm the new

member’s admission into the group to

complete the process.

Once the admin receives this notification, she can change the group back

to “secret”.

The member must find the group (by using the URL) and click on “Join”

to join the group.

Assisting Caregivers with Facebook.

• Educating group members about Facebook.

– Provided handouts (email and posted on the group) and provided individual education.

• Providing continual education, especially as the Facebook platform evolves.

• Providing education as issues arise.

How Caregivers Accessed the Group

Methods of Accessing the Group

Computer 16

Smartphone 7

Tablet 4

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How Caregivers Accessed the Group

FB Notification Types Enabled

Via Email 1

When logging in to Facebook 3

From a combination of the two 2

I do not receive notifications and have to manually go to the group to see updates.

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How the Moderator Accessed The Group

• The moderator got a notification on her smartphone every time a member posted or liked a comment on the group.

• The moderator checked the group on both her smartphone and while accessing Facebook via her personal computer.

• She checked the posts every time she got a notification and also every other day if she had not received any notifications to see if the members had viewed the posts.

How the Moderator Managed The Group

• The moderator found psychosocial material and proposed a discussion question, then sent the material to another social worker for review.

• Every Friday the moderator posted the psychosocial material, link, and discussion question to the group.

• If no one or only one member had responded to the post within a few days days, the moderator probed for more discussion from the members.

• The moderator also sent emails to check in with members if she identified comments that indicated concern and necessitated follow up.

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Technical Issues

• “Losing” posts.

• Security concerns.

– “Seeing” the groups post and concern whether the posts are in public view.

• “Seen by” function.

Example of Technical Issues Member # 6: “William” for some reason your post are showing up on public view.”

Member # 2: “I'd prefer that my posts on this site remain private so if they are somehow going out as public, I'd appreciate it if they could be locked back down to just being seen here.”

Moderator (Megan): “Everyone- the group settings are set up as secret. I just made sure and checked and they still are and I went ahead and did it again. Some of you might be getting confused on what is showing up on your personal Facebook "wall" and your newsfeed. Only you can see your newsfeed. None of your friends can see your newsfeed. However, if it's on your personal wall, then we need to figure out what is going on. I've checked with other group members and they have not had anything that they've shared or that others have shared show up on their wall, so I'm wondering if maybe there is some confusion going on. “Sally”- Are you able to take a screenshot of what you're seeing and private message it to me? Please let me know. Thanks. We want to make sure that this group stays secret and confidential. That is very important to us, as I know it is to you as well!”

Example of Technical Issue Member #2 “Thanks Megan.... I have no way of telling (obviously)....just basing it on what “Sally” indicated. Member #6 “Megan it was showing on my news feed, no one else’s stuff has done that before.” Moderator- “That is your own personal and private newsfeed. I'm not sure why you have not seen them in your newsfeed before. Facebook is constantly changing how they display items in ones newsfeeds. However, since it was on your private newsfeed and not on your wall, there was no breach of confidentiality that occurred. Please let me know if you have any questions. Thanks.” Member # 2 “Thanks Megan” Moderator- “No problem. We want to make sure that everyone's privacy is kept. I'm going to post something for everyone, so that they know how to report it if something happens where they think their privacy is being threatened.”

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Psychosocial Aspects

Group Process

• New members were referred to the research team by hospice bereavement coordinators.

– Recruiting Ideal Candidates

• Established Facebook users.

• Caregivers who may be isolated or hesitant to seek regular group support.

• Caregivers with barriers to accessing traditional support.

• Caregivers who needed additional support.

Group Process – Referring back to bereavement coordinators

• When a bereaved member was in a lot of pain and the moderator assessed with her supervisor that he needed further mental health counseling.

• A group member seemed to be very down and was posting a lot about being in shock.

• When it was approaching the one year anniversary of one of the members wife's death.

• Each member was told by the moderator that their Bereavement Coordinator was contacted and would be getting in touch with them. They were all grateful for this.

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Group Process

• The group admin explained the study, provided oral informed consent, and added members to the group as they were referred to her.

• The admin facilitated and moderated each discussion with supervision and assistance from fellow research team social workers.

• Discussions were lead by the admin (weekly) and members also created independent discussions.

Group Discussions • Administrator lead discussions

– Weekly posts on a psychoeducational topic, with discussion questions.

Group Discussions • Administrator lead discussions.

– Criteria for the weekly topic from a “reputable” source. • Source: Is the site reputable? (i.e. Is it a government

source or well established organization? Is it well known to the clinical community?)

• Author: Is the author reputable? (i.e. Is the author well known to the clinical community? Is the author trained in bereavement – MSW, LPC, etc.?)

• Supporting Literature: Does the author cite sources? (Are the sources from peer-reviewed journals/books? Are the sources up to date or from well established texts?)

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Group Discussions • Member lead discussions

Psychosocial Risks and Challenges Associated With A Facebook Support Group

Risks-

• Triggers from psychosocial material and also from other members posts; unable to gauge nonverbals or silence.

• Emotions by others could disengage others.

• There is no real time management of crises.

• Members reaching out and nobody responding to them.

• Some of the posts challenged members beliefs about the grieving process.

Psychological Risks and Challenges Associated With A Facebook Support Group

Challenges-

• Posting material with discussion question and receiving no response from members.

• Dominant members

• Lack of finding appropriate material towards the end

• Can’t read non-verbals

• Knowing when to respond as a moderator and when to let the group respond.

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Psychological Risks and Challenges Associated With A Facebook Support Group

• Cancer vs. non cancer bereaved members

• Spouses vs. non spouses

• Deescalating intense emotions (e.g. anger)

• Examples of some of these on the next few slides

Examples of Members Who Lost Their Spouses to Cancer Posts (they only spoke with each other most of the time)

• Member #2 “Not sure if this is just me or not, but I tend to do pretty well during the day. But nights?...wow...Not so much. Just seems like I've got more time to think and replay things. The quiet is quieter and the aloneness is a little more "alone". The only thing I can think is even if I was working a night shift, I always saw her at night at some point..... Always. I'm curious if nights are tougher for others or if it’s just hit and miss. Are you all seeing a pattern one way or another?”

Examples of Members Who Lost Their Spouses to Cancer Posts

• Member # 8 “Yes, I think evenings are harder. That makes sense. If you were in the habit of being at work all day long - separately from your loved one -- but together when you came home -- well you are feeling the hole more at night. Making sense doesn't make it any easier. I am finding that it is important to find a balance of nights at home alone (after all - we do have to feel this stuff to move on) - and having some things scheduled; like a glass of wine with a friend or an early evening walk. Any of that seems to take the edge off of a whole evening alone. Maybe some thing here will help -- best.”

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Examples of Members Who Lost Their Spouses to Cancer Posts

• Member #2 “I can tell you, I've become dependent on evening Facebook chats with friends. For that moment, you're not alone and can feel like somebody gives a crap if you made it home in one piece. I've made Wal-Mart runs for absolutely NOTHING just to wander and feel as though I have something that needs to be done. A daily challenge to find purpose and meaning....”

• Member# 8 “I think this is where support groups can be helpful. Have you found some face to face options? just a thought.”

Examples of Members Who Lost Their Spouses to Cancer Posts (cont)

• Member# 2 “As much as I care to have..... Like I said....most times, I'm pretty good. There's just times that the wheels far off and "forever" becomes an echoing voice that catapults you backwards.”

• Member # 7 “Evenings and nights are bad, I just dread going

home. Usually end up crying on my way home or soon after I am there, just reinforces the realty that “Frank” is no longer here. I was always comfortable being alone before but like “William” said it is so much more lonely and things replay in your head. The nights with my son and his wife make it better. Dreary, cold cloudy days are hard. I think summer will help, I sure hope so. I will be outside more - working in the yard or go wading in the river. You can only clean a house so much and it doesn't get very dirty with just me.”

Examples of Intense Emotions (e.g. anger)

• [In response to an admin post]

– Member # 2 stated “Anger? Not really. Guilt? Oh yea. Frustration and philosophical torment? Heck yea....Equal prayers for healing for two people. One is healed. One is not. God decides one dies and decides one does not. How do you not blame God for that? I can accept the fact that's "the plan"....I can't accept the "don't blame God" because he didn't cause it. If he can heal it and doesn't, that kind of puts it on his plate. Not really looking for an answer.....again, I know there isn't one. Just hard to hear people praising the deity that chose to take my girl even though the entire world prayed for her healing and I see [expletive] that nobody gives a care about (as well as good people that were equally prayed for) healed. I just need the consistency. If he gets the credit for healing, he gets the blame for choosing not to. Guilt: Why am I still here? How do I enjoy "OUR" things when she's not there? Every good memory involved "us". Trying to find some degree of happiness is a struggle to not only find, but to not feel guilty about when I do. How do I cope? I'll let you know when I figure it out.... Lol”

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Ethical Issues

• Security associated with the group

• Doing more harm than good by having newly bereaved caregivers in the group (2 weeks post-loss)

• Not having someone moderating at all times (e.g. during the night)

The Benefits of Using a Facebook Group As An Online Support Medium

• It’s always available

• It’s free

• Members don’t have to leave their home

• Suitable for different communication styles

• Great for active caregivers

• It was supportive and psychosocial in nature

Benefits Continued….

• Invest as much or as little time as wanted in it

• It was a secret group (confidential)

• Have access to others that have been through the similar situation

• It’s a safe place to learn and process

• Can be accessed on phone, computer or tablet

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Examples of Benefits of Using an Online Support Medium

Member one “ Actually, some of the conversations at the grief support group I go to also have that affect on me ( ongoing sadness). Makes me wonder if I should be there.”

[Response from member #2 on next slide]

Response from Member # 2 “… I’ve thought about the same thing and as such, have not been to a “group” but can see why that could have the affect on you. Constantly reliving the pain of your loss doesn’t seem to be productive to me. My goal is to grow past the pain rather than to be in perpetual loop of life that “stopped” when my wife died. I do enough re-living on my own without scheduling additional sad times to melt down at. I’m sure it IS positive to some … just not sure it is for me. Glad you posted your thoughts …kind of confirms that I’m not the only one wondering about it.

Recommendations

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Recommendations for Implementation

• Wait at least a 4-6 weeks after the bereaved ones loved one has passed away before letting them join the group

• Assess caregivers for suicidality before their entrance into the group

• Have at least two social workers moderating the group (possibly rotating one every other week)

• Establish clear expectations for the moderator (e.g. the moderator will check the group twice a day, so the group does not expect more frequent replies.)

Recommendations for Implementation • Have a “crash course” on Facebook once the

caregiver agrees to be a part of the group • Try to get the member to join the group at the

time of talking to them, in order to make sure that the group is not a “closed” group for that long.

• Have a group for spouses and non-spouses and also for those who lost a loved one to cancer and those who didn’t

• Have a lot of different psychosocial material ready that you can link to and provide for the caregivers, to decrease the burden of finding a topic each week.

Conclusions

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Quantitative Data: Participant Anxiety (GAD-7) and Depression (PHQ-9) Scores

Time 1 (n = 16) Time 2 (n = 11)

Anxiety Score, mean 4.6 3.4

Anxiety Severity, n

None or Minimal (0-4) 7 8

Mild (5-9) 8 2

Moderate (10-14) 1 1

Severe (15-21) 0 0

Depression Score, mean 7.8 4.3

Depression Severity, n

None or Minimal (0-4) 5 6

Mild (5-9) 5 3

Moderate (10-14) 3 1

Moderately Severe (15-19) 3 0

Severe (20-27) 0 0

Member Thoughts on the Group

Member Thoughts on the Group

• “Thank you for your kind thoughts and thank you for this page. It allows me to voice my thoughts, know that I’m not alone and that my feelings are normal. Have a good day all.”

• “… THIS cyber-group is a pretty cool idea. It’s there when you need it…but not a scheduled thing.”

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Acknowledgements

• The project described was supported by Award Number R01NR011472 from the National Institute Of Nursing Research.

• The content is solely the responsibility of the authors and

does not necessarily represent the official views of the National Institute Of Nursing Research or the National Institutes of Health.

• The project is registered as a clinical trial record NCT01211340.

• Principle Investigator: Dr. Debra Parker Oliver, PhD, MSW

Documents

Learning Objectives - Confex