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Discussion Starter #1
Hi, I am a graduate student studying the social aspects of lupus in addition to having lupus myself. I'm looking for people would would be willing to answer just a few questions on how lupus has affected your social network (friends, family, co-workers, acquaintances) and social support.

It will be anonymous and brief. You can post your answers to these questions right in this forum or if you feel more comfortable, you can copy the questions into an email and send your answers to:

[email protected]

Here are the questions:

1a. Age:
1b. Race:
1c. Gender:
1d. Lupus Type (systemic or discoid):
2. Number of years since you were diagnosed with lupus:

3. Overall, has lupus increased or decreased the number of intimate (closest) friends, significant others, or family in your life?

4. Estimate by how many people (example: I am not in contact with 5 of my closest friends anymore since being diagnosed with lupus)?

5. Overall, has lupus increased or decreased the number of casual friends and family in your life?

6. Estimate by how many people?

7. Overall, has lupus increased or decreased the number of acquaintances in your life?

8. Estimate by how many people?

9a. Overall, has the quality of your social relationships increased or decreased since your diagnosis?

9b. Rate the quality of your social relationships since your diagnosis on a scale from 1 (lowest quality) to 10 (highest quality):

10. From a scale of 1 to 10, give an overall rating of how emotionally supportive (showing love, caring, sympathy, understanding, esteem, and value) you feel the people in your life are towards you since your diagnosis (1 being not at all supportive to 10 being perfect in their support).

11. From a scale of 1 to 10, give an overall rating of how physically supportive(driving you to the doctor, helping you get groceries, managing daily tasks, etc) you feel the people in your life are towards you since your diagnosis (1 being not at all supportive to 10 being perfect in their support).

12. From a scale of 1 to 10, give an overall rating of how informationally supportive (giving you advice that they've researched or read about lupus, buying your books on lupus, helping you find new doctors) you feel the people in your life are towards you since your diagnosis (1 being not at all supportive to 10 being perfect in their support).

13. Do you feel that you gain more emotional support from online communities such as this one than from your friends family? If yes, please describe why.

14. Do you feel that you gain more physical support from online communities such as this one than from your friends and family? If yes, please describe why.

15. Do you feel that you gain more informational support from online communities/support groups such as this one than from your friends and family? If yes, please describe why.

16. How many hours a day do you spend in online communities/support groups?

17. Do you feel that the time you spend in online communities/support groups is helpful or harmful towards your health?

18a. Do you play any online computer games that require a monthly supscription such as world of warcraft, diablo, halo, etc.
18b. If yes, how many hours per day do you play?
18c. If yes, has your playing caused you to neglect your health (skipping meals, sitting for long periods of time, etc).

19. Rate your quality of life since being diagnosed with lupus from 1 (lowest) to 10 (highest):

20a. Rate your activity level before your lupus diagnosis on a scale of 1 (lowest) to 10 (highest):
20b. Rate your activity level after being diagnosed with lupus on a scale of 1 (lowest) to 10 (highest):

21. Please list any additional comments you would like to make here:
 

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For our members who are aware of our guidelines, this research has been approved by Joanne (the site owner). If you would like to respond, then go ahead. If you are able to fit your response in a PM then that would be another way to respond and maintain the most anonymity possible.
 

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Discussion Starter #3
Thanks for your emails and PMs everyone, I just need probably about 3 or 4 more people to complete the questionnaire if anyone else has time. :)
I'm doing a brief presentation in my class tomorrow evening so I'd like to be able to share the overall results on the surveys.
 
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