The Impact of Covid-19

We would like to invite you to participate in our study about the experiences, concerns and support needs of people on dialysis and kidney transplant recipients who have been cocooning due to Covid-19.

Who can take part?
Any transplant recipient / person on dialysis aged 18yrs and over, living in Ireland, who has been advised or has chosen to cocoon due to Covid-19 can take part. We are equally interested in the views of people who decided to cocoon and those who did not (or who started cocooning and then gave it up).

How long will completion take?
Completion of this survey should not take longer than 20 minutes.

Do I have to take part?
No. It is entirely up to you whether you choose to take part, or not.

Is my participation anonymous and confidential?
You do not have to provide your name or contact details in order to complete the survey.

The information you give us will be kept confidential within the project team. We will store it on a password protected computer and will not sell it.

Can I withdraw my data from the study at a later date?
As the survey is completed anonymously, we cannot withdraw your data once you have entered it. Please note that partially completed surveys may also be used.

What will happen to the data?
We will share the results of the survey widely, including with health professionals and policy makers. We hope that this will help them to improve support for patients who are ‘cocooning’ and their families, now and in the future.

Once the survey has finished, the data will be stored on a password-protected computer at Donor House.

Are there any risks involved?
There are no risks to your health and personal safety from taking part in this study. You are free to omit any questions you do not feel comfortable answering.

If you would like to receive a copy of the survey results please be sure to include your email address at the end of the survey.

Who can I contact if I have any queries?
The research is being conducted by the Irish Kidney Association. You can contact the project coordinator; Colin White (colin@ika.ie)

Thank you for taking the time to consider participating in our research.

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* 1. By clicking the button below, you agree to take part in the survey and you acknowledge that: your participation in the study is voluntary; you are at least 18 years of age; you are aware that you may choose to stop filling in the survey at any time and for any reason, but that any answers you have already given may still be used.

Yes I consent to participate.

No, I do not wish to participate.

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* 2. Please describe your current treatment for end stage kidney disease.

Haemodialysis in a HSE Hospital

Haemodialysis in a satellite (contracted) unit

Home Haemodialysis

Peritoneal Dialysis (APD, CPD)

Transplant

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* 3. If you attend a hospital or satellite dialysis unit, did your transport change to help you adhere to social distancing?

Yes

N/A

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* 4. What is your current arrangement for your transport to and from dialysis?

I go by taxi as the only passenger

I go by taxi with other patient(s)

I go by public transport (bus, train, Luas)

I drive myself at no cost to the HSE

I drive myself and receive 30c per km from the HSE

I am driven by a family member at no cost to the HSE

I am driven by a family member and receive 30c per km from the HSE

Not applicable

I go by minibus with other patients (please indicate how many)

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* 5. Have any changes been made to your dialysis (e.g. treatment cancelled, time changed or have you moved to another centre)?

Yes

Not applicable

If Yes, please explain

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* 6. How easy or difficult have you found attending your usual dialysis treatment sessions and appointments while cocooning?

Extremely easy

Somewhat easy

Neither easy nor difficult

Somewhat difficult

Extremely Difficult

Not applicable

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* 7. If you are on peritoneal dialysis, home haemodialysis or transplanted, when did you start cocooning?

Date

Not applicable

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* 8. If you attend hospital or satellite dialysis you obviously cannot cocoon completely. However, when at home do you abide by the principles of cocooning?

Yes

Not Applicable

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* 9. What was your main reason for starting to 'cocoon'?

I was advised to cocoon by my consultant or GP

I was advised to cocoon by family or friends

I decided to cocoon after seeing/hearing government advice (For example, from the daily briefing by the Chief Medical Officer)

I decided to cocoon after reading information on a website for people living with end stage kidney disease

I decided to cocoon on my own initiative

Other (please specify)

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* 10. How difficult have you found each of the following recommended cocooning activities?

	Extremely easy	Moderately easy	Neither easy nor difficult	Moderately difficult	Extremely difficult	N/A
Not leaving my home at all	Not leaving my home at all Extremely easy	Not leaving my home at all Moderately easy	Not leaving my home at all Neither easy nor difficult	Not leaving my home at all Moderately difficult	Not leaving my home at all Extremely difficult	Not leaving my home at all N/A
Not attending any family gatherings	Not attending any family gatherings Extremely easy	Not attending any family gatherings Moderately easy	Not attending any family gatherings Neither easy nor difficult	Not attending any family gatherings Moderately difficult	Not attending any family gatherings Extremely difficult	Not attending any family gatherings N/A
Strictly avoiding contact with people who have symptoms of Covid-19	Strictly avoiding contact with people who have symptoms of Covid-19 Extremely easy	Strictly avoiding contact with people who have symptoms of Covid-19 Moderately easy	Strictly avoiding contact with people who have symptoms of Covid-19 Neither easy nor difficult	Strictly avoiding contact with people who have symptoms of Covid-19 Moderately difficult	Strictly avoiding contact with people who have symptoms of Covid-19 Extremely difficult	Strictly avoiding contact with people who have symptoms of Covid-19 N/A
Spending as little time as possible with other people living in my home	Spending as little time as possible with other people living in my home Extremely easy	Spending as little time as possible with other people living in my home Moderately easy	Spending as little time as possible with other people living in my home Neither easy nor difficult	Spending as little time as possible with other people living in my home Moderately difficult	Spending as little time as possible with other people living in my home Extremely difficult	Spending as little time as possible with other people living in my home N/A
Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area)	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) Extremely easy	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) Moderately easy	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) Neither easy nor difficult	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) Moderately difficult	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) Extremely difficult	Avoiding contact with other people in shared spaces inside my home (eg. kitchen, bathroom and sitting area) N/A
When in contact with people in my home keeping 2m away from them	When in contact with people in my home keeping 2m away from them Extremely easy	When in contact with people in my home keeping 2m away from them Moderately easy	When in contact with people in my home keeping 2m away from them Neither easy nor difficult	When in contact with people in my home keeping 2m away from them Moderately difficult	When in contact with people in my home keeping 2m away from them Extremely difficult	When in contact with people in my home keeping 2m away from them N/A

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* 11. How easy or difficult have you found each of the following recommended cocooning activities?

	Extremely easy	Moderately easy	Neither easy nor difficult	Moderately difficult	Extremely difficult	Not applicable
Eating meals alone	Eating meals alone Extremely easy	Eating meals alone Moderately easy	Eating meals alone Neither easy nor difficult	Eating meals alone Moderately difficult	Eating meals alone Extremely difficult	Eating meals alone Not applicable
Having cooking utensils, cutlery and crockery that only I use	Having cooking utensils, cutlery and crockery that only I use Extremely easy	Having cooking utensils, cutlery and crockery that only I use Moderately easy	Having cooking utensils, cutlery and crockery that only I use Neither easy nor difficult	Having cooking utensils, cutlery and crockery that only I use Moderately difficult	Having cooking utensils, cutlery and crockery that only I use Extremely difficult	Having cooking utensils, cutlery and crockery that only I use Not applicable
Regularly washing my hands with soap and water for 20 seconds	Regularly washing my hands with soap and water for 20 seconds Extremely easy	Regularly washing my hands with soap and water for 20 seconds Moderately easy	Regularly washing my hands with soap and water for 20 seconds Neither easy nor difficult	Regularly washing my hands with soap and water for 20 seconds Moderately difficult	Regularly washing my hands with soap and water for 20 seconds Extremely difficult	Regularly washing my hands with soap and water for 20 seconds Not applicable
Encouraging others in my home to follow advice recommended for people who are cocooning	Encouraging others in my home to follow advice recommended for people who are cocooning Extremely easy	Encouraging others in my home to follow advice recommended for people who are cocooning Moderately easy	Encouraging others in my home to follow advice recommended for people who are cocooning Neither easy nor difficult	Encouraging others in my home to follow advice recommended for people who are cocooning Moderately difficult	Encouraging others in my home to follow advice recommended for people who are cocooning Extremely difficult	Encouraging others in my home to follow advice recommended for people who are cocooning Not applicable
Finding somewhere inside or just outside my home to have a smoke (if applicable)	Finding somewhere inside or just outside my home to have a smoke (if applicable) Extremely easy	Finding somewhere inside or just outside my home to have a smoke (if applicable) Moderately easy	Finding somewhere inside or just outside my home to have a smoke (if applicable) Neither easy nor difficult	Finding somewhere inside or just outside my home to have a smoke (if applicable) Moderately difficult	Finding somewhere inside or just outside my home to have a smoke (if applicable) Extremely difficult	Finding somewhere inside or just outside my home to have a smoke (if applicable) Not applicable
Avoiding cigarette or cigar smoke inside or just outside my home	Avoiding cigarette or cigar smoke inside or just outside my home Extremely easy	Avoiding cigarette or cigar smoke inside or just outside my home Moderately easy	Avoiding cigarette or cigar smoke inside or just outside my home Neither easy nor difficult	Avoiding cigarette or cigar smoke inside or just outside my home Moderately difficult	Avoiding cigarette or cigar smoke inside or just outside my home Extremely difficult	Avoiding cigarette or cigar smoke inside or just outside my home Not applicable

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* 12. Have you consciously chosen not to follow any elements of the cocooning guidance?

Yes

I would prefer not to say

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* 13. If you answered yes to question 12, which element(s) and why?

eating meals alone

having to use my own cutlery, crockery, utensils

regularly washing my hands

encouraging others in my home to also follow the cocooning advice

finding somewhere to have a smoke

finding somewhere to avoid others smoking

Not applicable

Why

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* 14. During cocooning how easy or difficult do you find the following?

	Extremely easy	Moderately easy	Neither easy nor difficult	Moderately difficult	Extremely difficult	Not applicable
Being able to look after my children or other family members	Being able to look after my children or other family members Extremely easy	Being able to look after my children or other family members Moderately easy	Being able to look after my children or other family members Neither easy nor difficult	Being able to look after my children or other family members Moderately difficult	Being able to look after my children or other family members Extremely difficult	Being able to look after my children or other family members Not applicable
Being able to look after my pets	Being able to look after my pets Extremely easy	Being able to look after my pets Moderately easy	Being able to look after my pets Neither easy nor difficult	Being able to look after my pets Moderately difficult	Being able to look after my pets Extremely difficult	Being able to look after my pets Not applicable
Being able to undertake any other caring responsibilities I usually have	Being able to undertake any other caring responsibilities I usually have Extremely easy	Being able to undertake any other caring responsibilities I usually have Moderately easy	Being able to undertake any other caring responsibilities I usually have Neither easy nor difficult	Being able to undertake any other caring responsibilities I usually have Moderately difficult	Being able to undertake any other caring responsibilities I usually have Extremely difficult	Being able to undertake any other caring responsibilities I usually have Not applicable
Staying in touch with family and friends	Staying in touch with family and friends Extremely easy	Staying in touch with family and friends Moderately easy	Staying in touch with family and friends Neither easy nor difficult	Staying in touch with family and friends Moderately difficult	Staying in touch with family and friends Extremely difficult	Staying in touch with family and friends Not applicable
Keeping entertained	Keeping entertained Extremely easy	Keeping entertained Moderately easy	Keeping entertained Neither easy nor difficult	Keeping entertained Moderately difficult	Keeping entertained Extremely difficult	Keeping entertained Not applicable
Being able to continue working	Being able to continue working Extremely easy	Being able to continue working Moderately easy	Being able to continue working Neither easy nor difficult	Being able to continue working Moderately difficult	Being able to continue working Extremely difficult	Being able to continue working Not applicable

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* 15. During cocooning how easy or difficult have you found the following?

	Extremely easy	Moderately easy	Neither easy nor difficult	Moderately difficult	Extremely difficult	Not applicable
Being able to take time off work if needed	Being able to take time off work if needed Extremely easy	Being able to take time off work if needed Moderately easy	Being able to take time off work if needed Neither easy nor difficult	Being able to take time off work if needed Moderately difficult	Being able to take time off work if needed Extremely difficult	Being able to take time off work if needed Not applicable
Managing financial commitments	Managing financial commitments Extremely easy	Managing financial commitments Moderately easy	Managing financial commitments Neither easy nor difficult	Managing financial commitments Moderately difficult	Managing financial commitments Extremely difficult	Managing financial commitments Not applicable
Being able to practice my religion (if any) as usual	Being able to practice my religion (if any) as usual Extremely easy	Being able to practice my religion (if any) as usual Moderately easy	Being able to practice my religion (if any) as usual Neither easy nor difficult	Being able to practice my religion (if any) as usual Moderately difficult	Being able to practice my religion (if any) as usual Extremely difficult	Being able to practice my religion (if any) as usual Not applicable
Getting food and other household essentials delivered	Getting food and other household essentials delivered Extremely easy	Getting food and other household essentials delivered Moderately easy	Getting food and other household essentials delivered Neither easy nor difficult	Getting food and other household essentials delivered Moderately difficult	Getting food and other household essentials delivered Extremely difficult	Getting food and other household essentials delivered Not applicable
Eating healthily	Eating healthily Extremely easy	Eating healthily Moderately easy	Eating healthily Neither easy nor difficult	Eating healthily Moderately difficult	Eating healthily Extremely difficult	Eating healthily Not applicable
Following any special diet required for my End Stage Kidney Disease	Following any special diet required for my End Stage Kidney Disease Extremely easy	Following any special diet required for my End Stage Kidney Disease Moderately easy	Following any special diet required for my End Stage Kidney Disease Neither easy nor difficult	Following any special diet required for my End Stage Kidney Disease Moderately difficult	Following any special diet required for my End Stage Kidney Disease Extremely difficult	Following any special diet required for my End Stage Kidney Disease Not applicable

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* 16. During cocooning how difficult or easy have you found the following?

	Extremely easy	Moderately easy	Neither easy nor difficult	Moderately difficult	Extremely difficult
Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received	Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received Extremely easy	Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received Moderately easy	Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received Neither easy nor difficult	Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received Moderately difficult	Getting any personal assistance (eg with washing, dressing and cleaning my home) I usually received Extremely difficult
Being able to maintain my usual level of physical activity or exercise	Being able to maintain my usual level of physical activity or exercise Extremely easy	Being able to maintain my usual level of physical activity or exercise Moderately easy	Being able to maintain my usual level of physical activity or exercise Neither easy nor difficult	Being able to maintain my usual level of physical activity or exercise Moderately difficult	Being able to maintain my usual level of physical activity or exercise Extremely difficult
Getting my medication/treatment and any related supplies/equipment as usual	Getting my medication/treatment and any related supplies/equipment as usual Extremely easy	Getting my medication/treatment and any related supplies/equipment as usual Moderately easy	Getting my medication/treatment and any related supplies/equipment as usual Neither easy nor difficult	Getting my medication/treatment and any related supplies/equipment as usual Moderately difficult	Getting my medication/treatment and any related supplies/equipment as usual Extremely difficult
Looking after my End Stage Kidney Disease as well as usual	Looking after my End Stage Kidney Disease as well as usual Extremely easy	Looking after my End Stage Kidney Disease as well as usual Moderately easy	Looking after my End Stage Kidney Disease as well as usual Neither easy nor difficult	Looking after my End Stage Kidney Disease as well as usual Moderately difficult	Looking after my End Stage Kidney Disease as well as usual Extremely difficult
Staying positive day to day	Staying positive day to day Extremely easy	Staying positive day to day Moderately easy	Staying positive day to day Neither easy nor difficult	Staying positive day to day Moderately difficult	Staying positive day to day Extremely difficult
Staying positive about the future	Staying positive about the future Extremely easy	Staying positive about the future Moderately easy	Staying positive about the future Neither easy nor difficult	Staying positive about the future Moderately difficult	Staying positive about the future Extremely difficult

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* 17. How, if at all, has cocooning affected your relationship(s) with those around you?

Overall better

Overall unchanged

Overall worse

Don't know

Prefer not to say

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* 18. To what extent do you agree with the following statements?

	Strongly agree	Moderately agree	Neither agree nor disagree	Moderately disagree	Strongly disagree
I am worried about the risks that Covid-19 poses to me	I am worried about the risks that Covid-19 poses to me Strongly agree	I am worried about the risks that Covid-19 poses to me Moderately agree	I am worried about the risks that Covid-19 poses to me Neither agree nor disagree	I am worried about the risks that Covid-19 poses to me Moderately disagree	I am worried about the risks that Covid-19 poses to me Strongly disagree
I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease	I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease Strongly agree	I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease Moderately agree	I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease Neither agree nor disagree	I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease Moderately disagree	I am worried about the number of deaths from Covid-19 amongst people with End Stage Kidney Disease Strongly disagree
I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity)	I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity) Strongly agree	I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity) Moderately agree	I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity) Neither agree nor disagree	I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity) Moderately disagree	I am worried about the number of deaths from Covid-19 amongst people with whom I share other personal characteristics (such as age, sex, ethnicity) Strongly disagree
Cocooning is necessary for me	Cocooning is necessary for me Strongly agree	Cocooning is necessary for me Moderately agree	Cocooning is necessary for me Neither agree nor disagree	Cocooning is necessary for me Moderately disagree	Cocooning is necessary for me Strongly disagree

Why do you think that cocooning is / is not necessary for you?

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* 19. Have you received information about Covid-19 and cocooning?

Yes

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* 20. If yes, please indicate all sources you have received information from:

General Practice

Usual hospital healthcare team(s)

Government briefing (Daily briefings or website)

HSE Website

Irish Kidney Association website

Irish Kidney Association phone

Irish Kidney Association social media

Other social media

Newspapers

Television

Online news services

Family and friends

Not applicable

Other (please specify)

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* 21. Please comment on how useful you found your source(s) of information and advice.

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* 22. To what extent do you agree with the following statements?

	Strongly agree	Moderately agree	Neither agree nor disagree	Moderately disagree	Strongly disagree
Information and advice about cocooning has been timely	Information and advice about cocooning has been timely Strongly agree	Information and advice about cocooning has been timely Moderately agree	Information and advice about cocooning has been timely Neither agree nor disagree	Information and advice about cocooning has been timely Moderately disagree	Information and advice about cocooning has been timely Strongly disagree
Information and advice about cocooning has been clear and concise	Information and advice about cocooning has been clear and concise Strongly agree	Information and advice about cocooning has been clear and concise Moderately agree	Information and advice about cocooning has been clear and concise Neither agree nor disagree	Information and advice about cocooning has been clear and concise Moderately disagree	Information and advice about cocooning has been clear and concise Strongly disagree
Information and advice about cocooning has been trustworthy	Information and advice about cocooning has been trustworthy Strongly agree	Information and advice about cocooning has been trustworthy Moderately agree	Information and advice about cocooning has been trustworthy Neither agree nor disagree	Information and advice about cocooning has been trustworthy Moderately disagree	Information and advice about cocooning has been trustworthy Strongly disagree
There has been enough information and advice about cocooning in general	There has been enough information and advice about cocooning in general Strongly agree	There has been enough information and advice about cocooning in general Moderately agree	There has been enough information and advice about cocooning in general Neither agree nor disagree	There has been enough information and advice about cocooning in general Moderately disagree	There has been enough information and advice about cocooning in general Strongly disagree
There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease	There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease Strongly agree	There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease Moderately agree	There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease Neither agree nor disagree	There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease Moderately disagree	There has been enough information and advice about cocooning specific to people living with End Stage Kidney Disease Strongly disagree
At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon	At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon Strongly agree	At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon Moderately agree	At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon Neither agree nor disagree	At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon Moderately disagree	At the start of 'lockdown' in Ireland there was enough information and advice for people who needed to cocoon Strongly disagree

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* 23. Have you received any practical support (e.g. with shopping, delivery of medications, getting to GP/hospital appointments, etc) whilst cocooning?

Yes

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* 24. Have you had to break cocooning in order to shop for groceries, to collect medications or essential supplies for your End Stage Kidney Disease?

Yes

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* 25. If you are currently unable to work because you are cocooning, have you received financial assistance?

Yes

Prefer not to say

Not applicable

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* 26. Overall, how would you rate the quality of support provided to people who are cocooning and their families from...?

	Poor	Quite poor	Neither poor nor good	Quite good	Very good
Government	Government Poor	Government Quite poor	Government Neither poor nor good	Government Quite good	Government Very good
HSE	HSE Poor	HSE Quite poor	HSE Neither poor nor good	HSE Quite good	HSE Very good
Local Council	Local Council Poor	Local Council Quite poor	Local Council Neither poor nor good	Local Council Quite good	Local Council Very good
Charities and patients' organisations in general	Charities and patients' organisations in general Poor	Charities and patients' organisations in general Quite poor	Charities and patients' organisations in general Neither poor nor good	Charities and patients' organisations in general Quite good	Charities and patients' organisations in general Very good
General Practice	General Practice Poor	General Practice Quite poor	General Practice Neither poor nor good	General Practice Quite good	General Practice Very good

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* 27. Who is currently living with you while you are cocooning?
Please indicate how many children and/or adults are currently living with you.

	Number
Partner	Partner Number menu
Children under 18	Children under 18 Number menu
Other family members	Other family members Number menu
Flat / House mate	Flat / House mate Number menu
Landlord	Landlord Number menu
Tenant / Lodger	Tenant / Lodger Number menu
Professional carer	Professional carer Number menu
Other	Other Number menu

Please write YES below if you live alone

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* 28. Please indicate which of the following best describes your current living situation?

I live in a house /apartment that I own or co-own (outright or with a mortgage)

I live in a privately rented house or flat

I live in a house or apartment owned by the local council or housing association

I live in residential care (nursing home)

I live in temporary accommodation

I live in temporary accommodation that I moved into as part of cocooning to protect myself

I am homeless but I have somewhere I can stay regularly while cocooning

I am homeless and do not have somewhere I can stay regularly while cocooning

Other (please specify)

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* 29. Please tell us...

	Yes	No	Prefer not to say
Do you have access to a room in your home where you could self isolate, if needed?	Do you have access to a room in your home where you could self isolate, if needed? Yes	Do you have access to a room in your home where you could self isolate, if needed? No	Do you have access to a room in your home where you could self isolate, if needed? Prefer not to say
Do you have access to a garden or other outside space while cocooning?	Do you have access to a garden or other outside space while cocooning? Yes	Do you have access to a garden or other outside space while cocooning? No	Do you have access to a garden or other outside space while cocooning? Prefer not to say

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* 30. Has anyone living in your home been leaving the house for work?

Yes

Not applicable, I live on my own

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* 31. Is anyone living in your home working directly with people who have/are suspected of having Covid-19?

Yes

Not applicable (I am living on my own)

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* 32. If yes, how does this affect your ability to cocoon?

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* 33. Do you think your current living situation increases the risk of you getting Covid-19?

Yes

Prefer not to say

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* 34. Is there anything else about your current housing situation that stops you from being able to cocoon effectively?

Yes

I would prefer not to say

If Yes, please describe

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* 35. Do you need to leave your home in order to receive dialysis or to have bloods taken?

Yes

Not applicable

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* 36. If Yes,

	Yes	No	Don't know
Do you think that having to do this increases your risk of getting Covid-19?	Do you think that having to do this increases your risk of getting Covid-19? Yes	Do you think that having to do this increases your risk of getting Covid-19? No	Do you think that having to do this increases your risk of getting Covid-19? Don't know
Have you chosen not to attend any routine treatment sessions because you are worried about your risk of doing so?	Have you chosen not to attend any routine treatment sessions because you are worried about your risk of doing so? Yes	Have you chosen not to attend any routine treatment sessions because you are worried about your risk of doing so? No	Have you chosen not to attend any routine treatment sessions because you are worried about your risk of doing so? Don't know

Not applicable (enter N/A)

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* 37. Have you had any scheduled consultations with your usual health care team while cocooning?

Yes

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* 38. If yes, how were these conducted? Tick as many as apply.

Face to face consultation

Remote Consultation (online / phone)

Not applicable

Other (please specify)

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* 39. How would you describe your level of contact with your usual healthcare team while cocooning?

More frequent than usual

About the same

Less frequent than usual

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* 40. Are there any teams or support services that you usually access to help you manage your health condition/s that you have been unable to access due to COVID-19?

Yes

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* 41. If yes, which? Tick as many as apply.

Medical team (doctors)

Nursing team

Physiotherapy

Occupational therapy

Pain clinic

Dietitian

Speech and language therapy

Podiatry (chiropody)

Counselling

Social worker

Complementary therapy(ies)

Dermatologist

Not applicable

Other (please specify)

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* 42. If there have been any changes made to your usual care, do you think these have made your medical condition(s) worse?

Yes

Don't know

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* 43. Have you had to attend your general practice or a hospital (usual care team or accident & emergency/casualty department) ?

Yes

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* 44. If yes, did you delay seeking help, even when you knew your condition was getting worse?

Yes

Not applicable

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* 45. Hows does your physical activity during cocooning compare with how it was previously?

More active

About the same

Less active

Don't know

Prefer not to say

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* 46. How important do you consider being physically active to be for the management of your health condition?

Extremely important

Moderately important

Slightly important

Not at all important

Not applicable

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* 47. How does your mood during cocooning compare to how it was before?

Better

About the same

Worse

Don't know

Prefer not to say

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* 48. Have you received any help or support for your mental/emotional well-being during cocooning?

Yes from my usual healthcare team

Yes from sources I found myself

No but I would have liked to have been offered this

No and I have not needed or wanted this

Don't know

Prefer not to say

Other (please specify)

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* 49. With restrictions being relaxed, are you still cocooning?

Yes as much as I was initially

Yes but a little less than I was initially

Yes but much less than I was initially

No I have stopped cocooning

If no, why have you stopped cocooning?

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* 50. If you are still cocooning, how long are you going to continue to do so?

I am going to stop in the next day or two

Until I am told to stop by my medical team

Until there is a vaccine

For however long it takes for me to feel safe

Other (please specify)

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* 51. What will you do if there is a recommendation that you should carry on cocooning beyond when you were planning to stop?

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* 52. How concerned are you about the following?

	Extremely concerned	Moderately concerned	Slightly concerned	Not at all concerned	Don't know	Not applicable
that there is still a risk to my health from Covid-19 when I stop cocooning	that there is still a risk to my health from Covid-19 when I stop cocooning Extremely concerned	that there is still a risk to my health from Covid-19 when I stop cocooning Moderately concerned	that there is still a risk to my health from Covid-19 when I stop cocooning Slightly concerned	that there is still a risk to my health from Covid-19 when I stop cocooning Not at all concerned	that there is still a risk to my health from Covid-19 when I stop cocooning Don't know	that there is still a risk to my health from Covid-19 when I stop cocooning Not applicable
that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Extremely concerned	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Moderately concerned	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Slightly concerned	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Not at all concerned	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Don't know	that support for people who are cocooning (from government or other sources) will cease to exist once the 'lockdown' is lifted Not applicable
that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Extremely concerned	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Moderately concerned	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Slightly concerned	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Not at all concerned	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Don't know	that people with End Stage Kidney Disease will no longer be recognised as extremely vulnerable to Covid-19 once the 'lockdown' is lifted Not applicable
that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable)	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Extremely concerned	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Moderately concerned	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Slightly concerned	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Not at all concerned	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Don't know	that people in my home returning to work may increase my risk of being infected by Covid-19 (if applicable) Not applicable
that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable)	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Extremely concerned	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Moderately concerned	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Slightly concerned	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Not at all concerned	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Don't know	that when children in my home return to school it may increase my risk of being infected by Covid-19 (if applicable) Not applicable
that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Extremely concerned	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Moderately concerned	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Slightly concerned	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Not at all concerned	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Don't know	that my employer / university / college will no longer support me cocooning once 'lockdown' is lifted Not applicable

Question Title

* 53. How concerned are you about the following?

	Extremely concerned	Moderately concerned	Slightly concerned	Not at all concerned	Don't know	Not applicable
that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'.	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Extremely concerned	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Moderately concerned	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Slightly concerned	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Not at all concerned	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Don't know	that my employer/university/college does not understand the difference between 'social distancing' and 'cocooning'. Not applicable
that I will no longer be able to work from home once 'lockdown' is lifted (if applicable)	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Extremely concerned	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Moderately concerned	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Slightly concerned	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Not at all concerned	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Don't know	that I will no longer be able to work from home once 'lockdown' is lifted (if applicable) Not applicable
that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable)	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Extremely concerned	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Moderately concerned	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Slightly concerned	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Not at all concerned	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Don't know	that I will regularly need to use public transport (train / bus / Luas) to get to work when I am no longer cocooning (if applicable) Not applicable
that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal'	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Extremely concerned	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Moderately concerned	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Slightly concerned	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Not at all concerned	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Don't know	that I will need to carry on my cocooning whilst my family / friends / colleagues return to the 'new normal' Not applicable
that my health condition(s) will worsen if I have to carry on cocooning much longer	that my health condition(s) will worsen if I have to carry on cocooning much longer Extremely concerned	that my health condition(s) will worsen if I have to carry on cocooning much longer Moderately concerned	that my health condition(s) will worsen if I have to carry on cocooning much longer Slightly concerned	that my health condition(s) will worsen if I have to carry on cocooning much longer Not at all concerned	that my health condition(s) will worsen if I have to carry on cocooning much longer Don't know	that my health condition(s) will worsen if I have to carry on cocooning much longer Not applicable
that my overall physical well-being will worsen if I have to carry on cocooning much longer	that my overall physical well-being will worsen if I have to carry on cocooning much longer Extremely concerned	that my overall physical well-being will worsen if I have to carry on cocooning much longer Moderately concerned	that my overall physical well-being will worsen if I have to carry on cocooning much longer Slightly concerned	that my overall physical well-being will worsen if I have to carry on cocooning much longer Not at all concerned	that my overall physical well-being will worsen if I have to carry on cocooning much longer Don't know	that my overall physical well-being will worsen if I have to carry on cocooning much longer Not applicable
that my mental health will worsen if I have to carry on cocooning much longer	that my mental health will worsen if I have to carry on cocooning much longer Extremely concerned	that my mental health will worsen if I have to carry on cocooning much longer Moderately concerned	that my mental health will worsen if I have to carry on cocooning much longer Slightly concerned	that my mental health will worsen if I have to carry on cocooning much longer Not at all concerned	that my mental health will worsen if I have to carry on cocooning much longer Don't know	that my mental health will worsen if I have to carry on cocooning much longer Not applicable

Question Title

* 54. How do you think the government should manage the 'exit strategy' for people who are cocooning?

treat them the same as everyone else when relaxing the 'lockdown'

relax cocooning but slowly and gradually

relax cocooning for now but be ready to re-introduce it quickly if needed

not begin to relax cocooning until there is a sustained low level of Covid-19

not begin to relax cocooning until a vaccine has been found

Other (please specify)

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* 55. Is there anything you would like to add regarding 'cocooning' or your experiences?

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* 56. We’d like to continue by asking you some more questions about yourself. We understand that Covid-19 seems to be affecting some people differently from others and that particular personal circumstances have made cocooning harder for some people than others.

You don’t have to tell us anything that you don’t want to.

What is your age?

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* 57. What gender do you identify as?

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* 58. What is your marital status?

Single

Married

Co-habiting with a partner

Separated

Divorced

Prefer not to say

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* 59. Do you have any children (under 18 years old) living at home, including foster children?

Yes

Prefer not to say

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* 60. Do you have any other medical conditions?

Yes

Prefer not to say

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* 61. Which of these best describes your current situation?

In employment (including self employment)

not in employment (furloughed)

not in employment (on benefits)

Student

Retired

Other (please specify)

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* 62. What is the highest level of education you have obtained?

No formal qualifications

Junior cert or equivalent

Leaving cert or equivalent

Degree level

Professional or vocational qualifications

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* 63. What county do you live in?

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* 64. How would you describe where you live?

City

Town

Rural

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* 65. Are you an informal (unpaid) carer for someone else?

Yes

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* 66. Are you personally in receipt of paid social care, such as carers, support workers or personal assistants?

Yes

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* 67. If yes, has this been impacted by COVID-19?

Yes

Not applicable

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* 68. If you would like to receive a copy of the results of this survey please give us your email address below. Your email will not be used for any other purpose.

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* 69. Thank you so much for participating in our survey, this is the end of the survey.

Please contact the Irish Kidney Association if this survey has raised any questions or issues for you that you would like addressed. colin@ika.ie

(Just click the next button one more time and you will exit the survey)

The Impact of Covid-19