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WHAT'S IT ALL ABOUT ? |
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| It's all about living with Multiple Sclerosis! | ||||
| It's all about some research! | ||||
| It's all about participation in this research - and willingness to share some of your experiences with the researcher and/or with others. | ||||
| IT'S ALL ABOUT THANKING YOU FOR YOUR PARTICIPATION! | ||||
| THERE WERE OVER 300 RESPONSES FROM AROUND THE WORLD!! | ||||
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WHAT FOR? |
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| The overall purpose of this research project was to begin capturing the
essence of experiences, thoughts, or feelings of living with Multiple Sclerosis
(M.S.)
. . . both for the family member(s) of individuals with M.S. and also . . . persons with M.S. |
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| A review and summary of the KALEIDOSCOPE
of experiences, perceptions, and meanings of living with M.S. will be
available September of 1997. It is anticipated that it may shed a greater sense of "Knowing" and "Understanding" - - the complex nature of living with M.S. among family members - - and provide a forum of encouragement and support for you, helpful insights for health care providers, and additional ideas for your health. |
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WHO'S YOU??? | |||
| You are a FAMILY MEMBER living with an individual who has Multiple Sclerosis. . . a SPOUSE, PARTNER, SIBLING, PARENT or CHILD . . . . . | ||||
| or | ||||
| You are an individual who has been diagnosed with Multiple Sclerosis. | ||||
| and | ||||
| You participated in this project!! | ||||
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WHO'S LYNDA ANYWAY??? | | ||
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Lynda is a NURSE with a Ph.D. in Nursing, a RESEARCHER, a WIFE, a MOTHER of ONE SON, a FIRST-BORN SIBLING with 2 brothers and 2 sisters, a DAUGHTER, a PRESENTER for the National Multiple Sclerosis Society (United States), and an individual who was diagnosed with Multiple Sclerosis. | |||
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WHAT DO YOU NEED TO KNOW ? |
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| 1) Once again, I want to thank those of you who participated in this study. 2) This study was approved by an institutional review board, guaranteeing the rights of human subjects. |
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| 3) Participation was voluntary. |
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| 4) All participants were granted total anonymity. For clarity, I want you
to know that this web page was set up so that I received no identifying
information or e-mail addresses unless a separate e-mail was sent or you
included identifying information in your response. |
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| 5) The researcher will attempt to identify common themes for individuals
and families living with M.S. |
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| 6) Nothing will be shared or published that will contain names or any other
identifying information. |
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| 7) There is no known risk to participation (except eyestrain from surfing
the net too much or too long). |
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WHAT WOULD I LIKE YOU TO DO? |
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| Feel free to return here to review the results of the study. I hope the
analysis of the data will be available at this site in September of 1997. |
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To review some of the responses that other people have agreed could be
posted, click here: |
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One of the best support places for people with multiple sclerosis on the web is 'Jooly's Joint': a free worldwide webpal service for people living with Multiple Sclerosis. Jooly's Joint |
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Andy Barnes
has a large collection of links to interesting places on the web. |
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For reliable information, the Multiple Sclerosis Society is a good place to
start: |
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National Multiple Sclerosis Society (United
States) |
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Multiple Sclerosis Society of Great Britain and Northern Ireland |
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World of Multiple Sclerosis (International Federation of Multiple Sclerosis Societies) |
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Multiple Sclerosis Society of Canada |
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