From: Christine_Pederson@somasf.unm.edu (Christine Pederson)
Date: Mon, 26 Aug 1996 08:17:03 -0600
 
Survey of Users of Computer List Groups on the Internet
for Persons with Psychiatric Related Needs
March / April 1996
 
Summary
 
Number completing survey: 49
Estimated number of subscribers to lists: 600
Percentage response; 8%
 
CHARACTERISTICS OF THOSE COMPLETING THE SURVEY:
 
Lists: 	Almost half (45%) subscribed to MADNESS, 
	Walkers and Pendulum each had 27%
 
All had been recipients of psychiatric services. Over half had been
involuntarily treated and 63% had received inpatient services. Most
(91%) had received outpatient services and only a few (20%) had
received residential services. 
 
Most were white (96%),  female (69%), and from the US (86%). 
 
Most (70%) were from urban areas. Thirty percent (30%) were from areas
with 50,000 population or less.
 
Most had high school education or above. Only 3 (4 %) had not completed
high school.
 
The mean length of time subscribing to the list was 6 months. The range
was from 1 month to 24 months.
 
RESPONSES:
 
Overwhelmingly, the respondents said that the list had helped them cope
with / manage their life (89.6%). 
 
Comments indicated that the ways the lists help include:  stress
release, companionship, information exchange (especially on
medications), good activity for times when one isnt feeling up to much
else, increased awareness of onset of episodes , humor, put personal
issues into perspective, improves self-esteem, reduces isolation,
provides support group.
 
When distressed, most (83%) felt that the list helped, but 17% said no
or had mixed response. For some, it is distressing to read about the
turmoil others are going through. One was disturbed by being flamed
for posting when she was having a bad time. Some said that they didnt
get any response when they posted unless they were having a crisis. 
However, many made comments to the effect that the list gave them the
support they needed to continue their lives rather than give up and
kill them self.
 
 
Medications and Service Use: 
 
In terms of changes related to medication use since subscribing to the
list, half said there had been no change, and half said there had been
a change. 17% said that they use less. 
Most (90%) reported no change in use of inpatient services, but almost
half (45%) said that their use of outpatient services had changed since
subscribing to the list. 
 
 
 
 
 
Impact of list on medication and services use: 
 
Ten percent (10%) (4) of all responding to this question said that
subscribing to the list had had a major impact on the changes in their
use of medications and/or services; 42% (16) said it had had some
effect.  Twenty three (46%) gave comments which described how the list
had been beneficial related to medications including adjusting dosages
or trying new meds they learned about from list subscribers. Several
(10) comments related to how the list helped the person deal with
his/her therapist in a more assertive manner.  Some said they had
started seeing a therapist again with the support of the list group. A
few (3) said they were using services less because of the support they
received from the list.
 
Consumer Movement Involvement:
 
Most (70%) reported no change in their involvement in the consumer
movement. Many of those were already actively involved. Almost 30% said
that their involvement had increased, and several said that the list
enhanced their involvement through the information they received.
 
Comments: 
 
Most of the comments made were related to how helpful the list had been
to them for information about medications (46% mentioned) and for
enhancing their social network (40% mentioned).  Other comments
described improved management of illness (21%), help in dealing with
therapist (usually psychiatrist) 13%, improved self-perception (11%)
and improved mental functioning (4%).
 
The following are examples of some of the comments regarding how the
list has helped which illustrate the potential value of these lists in
recovery:
 
Now at least I have an outlet for my feelings. I have somewhere to
express my rage, my fears, my hopelessness....and sometimes thats all
it takes to pull me back out...a sympathetic ear. .. When I am about to
stress out, the first place I run is to my keyboard.
 
Daily reading for information and having important personal questions
answered that my doc just didnt seem to think were relevant enough to
discuss. Gave me awareness of what to look for in a psychiatrist,
especially the ones to avoid.
 
Walkers was helpful in that it gave me the courage to tell the doc my
med wasnt working and that I wanted to try something else and gave me
information about meds and their effects / side effects.
 
I have become aware of the onset of episodes, and so have been able to
work around them before things got too bad.
 
...The humor is really healing, too. I laugh out loud (sitting here by
myself) sometimes, and I would never have thought there would be a
spiritual, healing, laughing component to Internet communication.
 
I think there are some superior IQs lost in the wreckage who would go
nuts with joy if they had access to Internet and MADNESS line.
 
It (MADNESS) has provided a place for me to organize my thoughts and
discuss the turmoil within me. I cannot emphasize the value of this
enough... While most people benefit from the therapeutic relationship
with a mental health professional, I think that every effort should be
made to get peer support for all mental patients, and especially those
who feel alienated from the medical profession.