Info re Attendance Characteristics of PD Support Group Participants and Needs Assessment Instruments

[Sharon Norman <normans1@xxxxxxxxxx>]

Hi!  As a "newbie" to the list, let me introduce myself.  I'm a
non-traditional (e.g., "older") Ph.D./Sociology student at the University of
Nevada - Las Vegas (had worked in aerospace for 9 years and got laid-off so
now I'm career-changing).  My husband (Art) has PD (was diagnosed about 8
years ago).  We've both been active in the Las Vegas support groups as well
as those in the Orange County area (California).

I've reached the point in my graduate program where I can start working on
my dissertation, and I would like to have my research be useful to the PD
community.  Thus I am thinking of taking an applied approach looking at some
quality-of-life issues.  Assuming that support groups are primarily useful,
one of the key questions I hope to address in my dissertation is why people
don't attend support groups on a regular basis.  I'm sure there are many
reasons and would like to learn what they are.

I'm aware of the Global Parkinson's Disease Survey (GPDS) that was done
fairly recently and am trying to get hard copies of the survey instruments
used.  Does anyone of this list know of any PD support groups that have done
any kind of needs assessment survey to their members on their mailing lists?
I am especially interested in getting either a point-of-contact and/or leads
for the actual survey instruments (so I don't have to reinvent "the wheel")
:)-

Any help will be much appreciated.  Thanks in advance.

Sharon Norman