Sickle Cell Disease and Covid-19 Lockdown
The pandemic has affected all aspects of our life including employment, Social relations, educations and many more. Australian Sickle Cell Advocacy Inc and DORYS sickle cell disease organization in France are conducting an online survey to understand the behavior of people affected by sickle cell disease in Australia during the 1st lockdown the current COVID-19 pandemic and how it affected them. By participating in this survey, you will help us to know how sickle cell patients lived and their reaction during lockdown, and towards this health crisis the Covid-19 in Australia. This will also help us understand how well we can support people affected by sickle cell disease. This information can be used by the Australian Hospitals, the healthcare professionals treating people living with sickle cell disease and other agencies to tailor services for these community of people. This survey is expected to take 5 minutes to complete.  If you have any further questions you can contact the study team via email - covid19@aussicklecelladvocacy.org. Thank you for your contribution to this important survey.
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Email *
Covid-19 Lockdown Experience
Australian Sickle Cell Advocacy Inc would like to invite you to complete a survey on your experience with Covid-19 Lockdown. Thank you for completing the survey.
Your Identity *
What is your age? *
What type of sickle cell disease do you or your child live with?
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What is your resident status?
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Were is your place of residence?
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Occupation
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How was your employment status before the pandemic?
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Did you have to change your employment status during the Covid-19 Pandemic?
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How has Covid-19 affected you economically?
Did you lose your employment during the pandemic?
Did you get any financial assistance from the government during the Covid-19 lockdown?
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In which referral center (or hospital) are you being treated?
Are you paying more attention to your health during this Covid-19 period compared to previous seasonal flu periods? (Check box)
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If yes to above, how have you been paying more attention?
How can you describe the covid-19 pandemic in four words? The first (1) being the most important or significant and the last (4th) the least important
List 1 to 4 things that were hard for you to bear during this period of Covid-19. The first (1) being the hardest and the last (4) the least hard
How did you spend the isolations period?
Did you use the mask the whole period in Lockdown?
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Do you have difficulty breathing with the mask?
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During this Covid-19 period, did you take any personal measures that you did not take before?
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If yes to above, what measure did you take?
Did you or your child had 1 or more vaso-occlusive crisis during lockdown? Yes or no? If yes, how did you manage this or these crisis? Or did you finally go to the hospital?
Approximately how many painful attacks did you or your child have requiring hospitalization prior to lockdown in the last year: 0 1 2 3 4 5 6 7 8 9 10 >10 (or more than 10)
Approximately how many painful crisis were you or your child having at home (other than those requiring you to go to hospital) before lockdown in the last year March 10, 2019-March 10, 2020: 0 1 2 3 4 5 6 7 8 9 10 >10 >15 >20
In the period of lockdown, how many painful attacks have you or your child had to manage at home: 0 1 2 3 4 5 6 7 8 9 10
In this case, on average how many days did the crisis last: 0.5 (half day) 1 2 3 4 5 6 7 >7 days
Have you or your child taken (or are you still taking) other medications for fear of becoming infected with the new coronavirus? Or herbal tea? Or vitamins to strengthen you? If so, which ones?
Did you or your child have to do your hospital appointments during the lockdown?
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If yes to above, did you do your appointments over Telehealth?
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If yes to above, how was your telehealth experience?  What did you love about it, what did you dislike about it?
Would you prefer Telehealth appointments in the future?
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How has been your mental health during the Covid-19 period? Did you experience any of the following?
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If you have been stressed, anxious, distressed, what have you done to manage the situation?
Did you spend lockdown all by yourself?
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If you live with your family, has lockdown been:
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Did you do any physical activity before lockdown?
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If you did: 1. how many times a week? 2. what activities? 3. For how many minutes?
If you did, were you able to do it during lockdown? If yes, how (number of times per week, activities and approximate minutes)?
If you didn't, did you consider doing it during lockdown?
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If you don't do any physical and sports activities at all, what are the reasons for this limitation?
If you don't participate in physical activity and sports at all, would you like to now?
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If you are interested in physical activities and sports, what activities would you choose? The first one being the one you would most like to do.
Were you infected with COVID-19?
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Were you required to do a Covid-19 test due to being exposed to someone with the virus?
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Are you connected to any Australian Sickle Cell Advocacy Inc Support Group?
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If no, would you like us to send you information on the group in your area?
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Have you receive the ASCA Covid-19 Emergency Kits yet? *
1 point
If your answer is no to the above or you have not heard about this, would you contact you Haematologist or our office to collect one? *
1 point
Do you have anything to add to the survey?
Finally would you like to receive the results of this survey?, if yes please provide either your number or an email address. Thank you for your time.
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