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Dear all,

I recently posted a questionnaire on the list regading your views on

online support group for my dissertation project. I'd like to thank

all those who have responded so far to the questionnaire that I

posted and the responses have been interesting, informative and very

helpful. I will post a notice for your information on the list when

the study is completed so that those who are interested can access it.

If anyone else is still interested in taking part, please do so. I

have copied the questionnaire below for you to copy off and

instructions of the website from which it can alternatively be

downloaded from or you can e-mail me at onlinestudy-

nro@... for a copy of the questionnaire.

If this post has offended anyone, please accept my apology as that is

not my intention.

Kind regards,

Nina R Otim

Questionnaire

Online Support Groups for HIV/AIDS

My name is Nina Rwomushana Otim. I am carrying out a research project

as part of a Master's in Health Informatics at University College

London, UK. The project is looking at the use of online support

groups for people affected by HIV and AIDS from the users' points of

view.

Taking part is voluntary and by returning the questionnaire, you

consent to taking part. You can withdraw from taking part at any time

without any consequences. If you do decide to take part in the study,

please indicate at the end of the questionnaire whether you would

like the information you have given to be used for research purposes.

All data collected for this study will be confidential and used in an

anonymous fashion. We will not retain any information that can

identify anyone who takes part. The information you give us will be

used for the purposes of research only. The data will be collected

and stored in accordance with the UK Data Protection Act 1998 and

will be disposed of in a secure manner. This study has been approved

by University College London's Research Ethics Commmittee.

Further information about the research can be seen at

http://www.chime.ucl.ac.uk/resources/onlinestudy-nro/

Participants need to be 18 years and over to take part.

If you consent to take part in this study, please e-mail the

completed questionnaire to onlinestudy-nro@...

QUESTIONS ABOUT YOU

1. In what country do you live?

2. Are you male or female?

3. What is your year of birth?

4. How have you been affected by HIV/AIDS?

I am living with HIV/AIDS

Someone close to me has/had HIV/AIDS

I work with HIV positive people

Other… (please specify)

5. For those living with HIV/AIDS: When were you first diagnosed

as being HIV positive?

For relatives and carers: When was the individual close to you first

diagnosed as being HIV positive?

QUESTIONS ABOUT YOUR VIEWS ON THE Pozhealth MAILING LIST.

Please select the answer which best describes your view and add any

comments as you wish.

6. To what extent do you view the mailing list as being

supportive?

not at all / a little / moderately / very / extremely

In what way? Please add any comments you wish…

7. Has being on the mailing list influenced the way you think

about your condition or the condition of someone close to you?

not at all / a little / moderately / very / extremely

In what way? Please add any comments you wish…

8. If you are living with HIV/AIDS: Has being on the mailing

list changed the way you manage your life?

For relatives/carers/friends: Has being on the mailing list changed

the way you deal with someone close to you?

not at all / a little / moderately / very / extremely

In what way? Please add any comments you wish…

9. Do you get any kind of support from any other place other

than this mailing list?

not at all / a little / moderately / very / extremely

In what way? Please add any comments you wish…

10. How important is it to you that the mailing list is

specifically for people infected with or affected by HIV?

not at all / a little / moderately / very / extremely

In what way? Please add any comments you wish…

11. Do you participate in any face-to-face HIV/AIDS support

groups? Yes / No

12. In your view, what are the advantages or disadvantages of the

mailing list over other sources of support?

13. How easy do you find it to talk about concerns on the list

(compared to face to face)?

much harder on the list / slightly harder on the list / about the

same / slightly easier on the list / much easier on the list

In what way? Please add any comments you wish…

14. What has been the most helpful aspect of the mailing list?

15. What has been the least helpful aspect of the mailing list?

16. Has the mailing list been helpful or unhelpful in any other

ways?

17. When did you join this mailing list?

18. How often do you read this mailing list?

several times a day / once or twice a day / once or a few times per

week / once or twice a month / less than once a month / never

19. How often do you post to this mailing list?

several times a day / once or twice a day / once or a few times per

week / once or twice a month / less than once a month / never

QUESTIONS ABOUT YOUR USE OF THE INTERNET

20. Where do you access the online support group?

home / work/ both / other location (please elaborate)

21. Do you have any particular reason for accessing the group

where you do?

22. Do you participate in any other mailing lists or other online

groups (like Web forums, chat rooms, Usenet) about HIV/AIDS? Yes /

No

23. When did you first join such a list?

24. Have you ever left or dropped out of an e-mail self-help

group? If so, please explain why.

25. Can I use short quotes from your responses in a research

report? (The quotes would be used anonymously.) Yes / No

26. Please add any other thoughts or feelings about the mailing

list or this research.

THANK YOU VERY MUCH FOR YOUR HELP.

Please e-mail the completed questionnaire to onlinestudy-

nro@...

The results of this study will be included on the college website at

http://www.chime.ucl.ac.uk/resources/onlinestudy-nro/ for you to view.

If you have any further questions about this research, please contact

Nina at onlinestudy@... or the project supervisor, Dr

Henry Potts, CHIME, Royal Free & University College Medical School,

Archway Campus, Highgate Hill, London N19 5LW, tel: +44 (0)20 7288

3383; e-mail: h.potts@...

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