The Empowered Caregiver Network (http://bit.ly/iLoVia) on May 22, 2011, hosted the first ever Virtual Support Group for members of the Well Spouse Association (http://bit.ly/jH3YUn) on May 22, 2011. This feedback from 29 caregivers clearly indicates overwhelming demand for additional support by family caregivers. With the population aging, family caregivers number an estimated 44 million in the US alone. The Empowered Caregiver Network is sponsoring monthly Virtual Support Groups and facilitating creation of support groups at the local level.

1. Well Spouse Association
Virtual Support Group
Participant Feedback
May 22, 2011

2. Virtual Support Group Plan
First-ever VSG (for Well Spouse or anyone)
Agenda
Introductions
Speaker (Viki Kind, bioethicist, re denial)
VSG (breakout sessions of 5 people each)
Closing
Scheduled duration: 1 hour

3. Virtual Support Group Results
Duration
Duration: 1 hour, 52 minutes (nearly 2x plan) D
Registered participants: 36 (including WSA)
Attendees: 26 (72%!)
Maximum at any one time: 22
Attendees at end of call: 18 (82% WOW!)
Attendees at end of call: 18 (82% WOW!)

4. Survey Question Summary
1. Presentation: how useful? 7. Other feedback?
2. Presentation length OK? 8. How inclined would you be
to:
3. Comments for speaker?
8.1.Participate again?
4. Breakout usefulness?
8.2.Encourage others?
5. Technical issues in
breakouts? 9. Interest in LOCAL support
group?
6. Breakout length OK?
Survey responses: n=14/26 (54%)

5. Summary Feedback
100% said very or extremely likely
Extremely Very Somewhat Not very Not at all
How inclined to:
Come again
Recommend
0% 25% 50% 75% 100%
n=13/14

6. Interested in Local Support Group?
Yes No Not sure
94% = yes or
25% not sure
8%
67%
n=12/14

7. Viki Kind’s Presentation
How useful was it?
Not at all Somewhat Fairly Very Extremely
86% said very
14% or extremely useful
43%
43%
n=14/14

8. Viki Kind’s Presentation
How was the length?
Too short Just right Too long
8% 46% said too long
46%
46%
n=13/14

9. Feedback for Viki Kind
No, I think the presentation was good--I just wanted more small group time
Save questions for the end of her talk - the questions were interruptive and off-
tracking.
I think we need to have separate calls for Webinars and Support Group Meetings.
Viki did a wonderful presentation
The reason I felt Viki's presentation was too short was because I felt she had
incredibly useful information and I would have loved to her more. She came across as
a very compassionate soul- excellent presentation
Needed to be directed specifically to spousal caregivers, rather than all caregivers.

10. VSG Breakout Session
How helpful was it?
Not at all Somewhat Fairly Very Extremely
40% said very
10%
10% or extremely useful
30%
40%
10%
n=10/14

11. VSG Breakout Session
How was the length?
Too short Just right Too long
100% said too short
100%
n=11/14

12. Reported Technical Issues
Yes No Not sure
58% = yes or
25% not sure
33%
42%
n=10/14

13. Feedback for Breakouts
Giving the participants an extra few (say 10? with
moderator delineation?) moments to get in the 'rhythm' of
how a teleconference works would be helpful.
During the "next" Virtual Support Group conference when
a larger number of Well Spouses and Former Well Spouses
register and the breakout support groups thus have more
people they will be much more useful. The idea for them is
great.
Have ws's post what topics they would like in the break out
rooms sometime prior to the conference call.

14. Feedback for Breakouts
We need an experienced SG facilitator in each room to
spark conversation. We need more time for people to talk
through open microphones. WSA Support Groups
should be limited to WSA Forum/Supporting members
only. Guests from other caregiving areas are welcome to
attend WEBINARS but the safety of well spouse
members must be protected.

15. Feedback for Breakouts
Continue to tell the groups not to be shy and for
individuals to speak up. We need to almost err on the
side of talking over each other so we can get through
introductions and move on to things of substance. There
was no time to discuss anything of value this first time
around, but it was good to hear our voices, where we
were from, and such! Very cool! I have relatively high
hopes for this, but realize that it's hard to do this over the
phone without having the visual cues of who wants to
speak and such.

16. Participant Conclusions
Having the video aspect added would
Extremely Very
help. The quality of the call was great--
I could hear people well without Somewhat Not very
interference and I got right into the Not at all
conference when I called. Thanks!
70%
Perhaps have a pre-announced topic.
Perhaps let us linger on the issues we 52.5%
find the more interesting. Ex: I needed
to think about and discuss the first
point about delivering/receiving bad 35%
dx. The topic of denial versus disbelief
was very helpful. If we could be linked 17.5%
to a keypad, we could save your time by
having typed questions, then we give
real voice to them. Thank you for all 0%
your effort in making or first a great Come again Recommend
success

17. Participant Conclusions
I think it would work better if the two
parts were held at separate times. People Extremely Very
could sign up for a presentation and Q&A Somewhat Not very
session with an expert, and sign up for a Not at all
separate peer support session at another
time. This way each component would 70%
have sufficient time to give us the most
value. Thank you for facilitating this, Jay.
What a wonderful service to well spouses! 52.5%
It might have been useful for 'attendees' to 35%
understand the breakdown of time
involved in the presentation vs. the time
in breakout groups. The information 17.5%
given prior did not make that clear.
Having a presentation at the beginning
does focus individuals on a group 0%
discussion topic, but our group barely got Come again Recommend
past introductions before time elapsed.

18. Participant Conclusions
Allow more time for the small group Extremely Very
discussion; the administrator of the Somewhat Not very
call should choose one person in each Not at all
group to be the group leader, just so
someone could keep things running 70%
smoothly, rather than everyone
wondering who should speak when.
52.5%
I can only stress that our members
35%
feel safe because we all walk the same
path. Spousal caregivers discuss things
that most of the general population, 17.5%
including other family caregivers,
might find offensive or questionable
WSA SGs must remain WSA SGs 0%
and not include other caregivers. Come again Recommend

19. Participant Conclusions
Allow more time for the small group Extremely Very
discussion; the administrator of the Somewhat Not very
call should choose one person in each Not at all
group to be the group leader, just so
someone could keep things running 70%
smoothly, rather than everyone
wondering who should speak when.
52.5%
I can only stress that our members
35%
feel safe because we all walk the same
path. Spousal caregivers discuss things
that most of the general population, 17.5%
including other family caregivers,
might find offensive or questionable
WSA SGs must remain WSA SGs 0%
and not include other caregivers. Come again Recommend