State of Caring Survey 2021

Greetings / Kia ora / Kia orana / Malo e lelei / Talofa lava
If you provide care and support for someone in your family, whanāu or aiga who is unwell or has a health condition or disability, thank you for sharing your experiences in this survey. What we learn will be used to better understand family carers - what they do, how they feel about their role, what support they receive or would like to receive, and how their own supports and wellbeing can be improved. We will repeat this survey regularly to bring recognition and improvements for carers in the media, in society, and with government. The survey is for those helping to support someone in their family - not those who work in the care sector :) 

In the survey, we'll be asking you to tell us what life is like now and what needs to change. This is the biggest survey into family, whānau and aiga carers' experiences in NZ. It will take 20-30 minutes to complete - so grab a cuppa and get comfy! At the end of the survey you can leave your contact details (optional) to enter our draw for 10 $100 retail vouchers, and to receive our survey report when it's available. Busy? Skip questions if you don't have much time, but answering with the tick boxes is very much appreciated. The more information you give us, the better we can build a good picture of how caring affects different people, so if you have more time, please do use the comment boxes! Your details will never be shared with a third party. We are so grateful to each and every person who takes the time to complete this survey. We will publish the first State of Caring New Zealand report in late 2021.
Content warning: questions may trigger strong emotions about mental health, anxiety, money, and support services.

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* 1. Are you currently  caring for someone in your family, whānau, or aiga? This support may be for someone who is unwell, or has a health condition or disability.

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* 2. If relevant, when did you stop caring? Otherwise skip to Question 3.

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* 3. The rest of the survey is worded for those who are currently caring. However we would really like to hear about your past experiences, so please do complete the rest of the survey to reflect your experiences while caring.

Where in NZ do you live?

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* 4. What kind of an area do you live in?

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* 5. How long have you been caring ?

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* 6. For about how many hours a week do you provide care?

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* 7. How many people do you care for who are unwell or need support due to a disability, injury, frailty, or for other reasons?

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* 8. Who do you care for? Please tick all that apply.

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* 9. How old is the person / people you support? Please tick all that apply.

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* 10. How would you describe their condition or disability? If you care for more than one person, please answer for the person you provide most support for. Please tick all that apply.

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* 11. How old are you?

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* 12. What is your gender?

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* 13. Ethnicity Please mark the space or spaces which apply to you.

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* 14. What type of care or support do you provide? Please tick all that apply.

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* 15. Where does the person / people you care for live? Please tick all that apply.

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* 16. If relevant, how far away from you does the person / people you are caring for live? Please tick all that apply.

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* 17. Needs Assessment and Service Coordination
Did your friend or family member's most recent needs assessment include questions about your needs as a carer? 


Having a needs assessment is how New Zealanders often access publicly funded services like respite, home help, and other community supports. An assessment should also look at how you are managing in your caring role, and what help you might need to keep caring (e.g. having breaks from caring, suitable equipment, accessible housing and modifications etc). We'd like to understand how well you feel heard and supported in your friend or family member's needs assessment.

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* 18. Needs assessment for the person / people you support
In more detail, to what extent did you feel the needs assessment process for your family / whānau member took your needs as a carer into account?

  This was not considered in the needs assessment This received some consideration but not enough This was thoroughly reflected in support allocated after the assessment N/A
Your ability and willingness to provide care 
Feeling able to say no to doing tasks you don't feel able or trained to do (or don't want to do)
The support you need to look after your own mental and physical health alongside caring
The support you need to juggle care with employment
The support you need to juggle care with training or education 
Your ability to maintain relationships with family and friends
Your ability to to have regular breaks from caring
Your ability to have time to yourself 
The suitability of your housing for continuing your caring role 
The equipment you and your family member need to manage mobility and support needs
Support needs for the person or people you care for in  case of an emergency
If relevant, the support you need as the person(s) you care for transition from children's to adult services
Your ability to be paid for at least some of your caring work

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* 19. In your view, would it be a good idea for family carers to have their own needs assessment, as happens in countries like the United Kingdom?

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* 20. Support for emergencies 
We're gathering evidence to push for more support to help carers plan for emergencies.

Have you had a conversation with a medical professional (e.g. a GP or nurse) about what will happen if the health of the person(s) you care for deteriorates or you can no longer continue to provide care?

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* 21. Has the person you care for been admitted to hospital in an emergency (i.e. had an unplanned admission) in the last 12 months?

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* 22. If yes, do you think the emergency admission could have been prevented by any of the following (please tick all that apply).

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* 23. If you became unwell suddenly, had an injury, or died, is there back-up for the person(s) you care for?

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* 24. Support with caring 
We'd like to hear more about the kinds of support that carers are getting or not getting. Please let us know whether you or those you support have access to any of the following. 

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* 25. How do you feel about the practical support you might get in the future?

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* 26. We'd like to hear if the level of care and support services you or the person you care for receives has changed or is changing. This could be increasing charges, the closure of services, or an increase in the number of hours of support the person care for is receiving.

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* 27. If you have experienced cuts or changes to services in this past year was this because (please tick any that apply)?

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* 28. Funding support
Do you or the person you care for receive funding to pay for necessary services, living costs, care items etc?

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* 29. Types of funding received by the person or people I support and / or me to support my caring role. Tick any that apply.

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* 30. Information for families, whānau and carers
Getting useful information is important for carers. We'd like to understand more about how you have found advice, information, and support. Tick any that apply.

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* 31. It's important to me to access advice and information in a language other than English.

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* 32. I prefer to get advice, information and support in these ways (tick any that apply).

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* 33. The Government's Guide for Carers: have you seen this resource and did you find it helpful? Tick any that apply.

WHEW! YOU ARE OVER HALFWAY THROUGH THE SURVEY. THANK YOU FOR SHARING YOUR EXPERIENCES!

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* 34. Using technology to make caring easier 
Technology can provide reassurance for carers and independence for those they assist. From mobile apps to sensor systems, there are many products already available to help make life a little easier. 
Do you or the person or people you care for use any of the following technologies? Please tick all that apply.

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* 35. Money and finances
Caring can take a toll on finances - costs may rise, while incomes may reduce. 
The evidence you provide will help us campaign for improvements in financial support for carers.

Which of the following best describe your financial situation? Please tick all that apply.

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* 36. If you are struggling to make ends meet, how are you coping? Please tick all that apply.

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* 37. Do you regularly use your own income or savings to pay for care or support services, equipment or products for the person you care for? This could include GP and health visits, transport, cleaning, personal cares, transport, continence or medical supplies, special foods, therapies etc.

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* 38. Missing out on support 
For many people it takes time to recognise that they have taken on a caring role and that support is available to them as a 'carer'. We'd like to understand this better so we can build on our evidence that carers need more support from professionals like GPs or social workers and others like employers. 

Many people who take on caring responsibilities do not recognise themselves as carers. How long did it for you to realise that you had taken on a caring role?

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* 39. Do you feel you missed out on support as a result of not recognising you were providing care or support for someone in your family, whānau, or aiga? Tick all that apply.

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* 40. If yes, What impact did missing out on support have? Please tick all that apply.

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* 41. Have you been affected by any of the following? Please tick any that apply.

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* 42. Do you work outside of your caring role?
Given the challenges that can result form balancing paid work and caring, it is unsurprising that many carers find it tricky to do both.

It's important that carers who want to work, and are able to do so, get the right support - and if it simply isn't possible to combine work and care, that policy makers understand why. We would like to hear more from carers about their experiences of juggling work with caring. 

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* 43. What is  your current employment situation? Please tick one - if more than one applies tick whichever describes your main activity

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* 44. If you are employed, are you a member of a union?

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* 45. Is your employer aware that you have caring responsibilities and how supportive are they?

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* 46. Preparing for and / or coping financially in retirement 
We'd like to gather evidence of the long term impact that caring can have on the ability of people to prepare for retirement.
Share your experiences so we can campaign for better financial support for carers both before and during retirement. How will you pay for your your retirement? Please tick all that apply.

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* 47. How has your ability to plan and save for your retirement been affected by your caring responsibilities? 

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* 48. Looking to the future, what about planning for your own care needs?

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* 49. Loneliness and social connection
Carers NZ is a founding member of the Coalition to End Loneliness, with Age Concern and others. We know that carers often feel isolated and may not receive any support for their role. We want to understand your experiences of how caring can affect relationships and social isolation. How often do you feel lonely ?

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* 50. Have you ever felt lonely or isolated as a result of your caring role? Please tick all that apply.

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* 51. Health and wellbeing
Please tell us a bit about your own health and wellbeing.
We know that carers are more likely to have bad health than people who aren't caring and we'd like to gather more evidence to seek improvements in the way health professionals support carers with their own health. How is your health in general?

  Very good  Good  Fair  Bad  Very bad 
Physical health 
Mental health 

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* 52. Life satisfaction 
We'd like to be able to compare carers' wellbeing experiences with national wellbeing statistics. 
Overall, how satisfied are you with your life at the moment?

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* 53. Overall, how happy did you feel yesterday?

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* 54. Carers often experience depression or anxiety. We'd like to know more about this. Are depression or anxiety a concern for you? Tick any that apply.

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* 55. Overall, how anxious did you feel yesterday?

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* 56. Physical activity 
There's a wealth of evidence that some kind of regular physical activity from taking a walk to doing exercise makes us healthier and happier. But there are lots of reasons why many of us aren't as active as we should be.
We'd like to understand how caring responsibilities might make it harder to get or stay active, to make a case for more support and opportunities for carers. Are you able to do as much exercise as you'd like to do?

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* 57. We'd like you to think about all the activities you did in the last week that can be categorised into the following
Vigorous physical activity - activities that take hard physical effort and make you breathe much harder than is normal for you e.g. heavy lifting, aerobics or fast cycling.
Moderate physical activity - activities that take moderate physical effort and make you breathe somewhat harder than normal for you e.g. carrying light loads, bicycling at a regular pace, recreational swimming.
Light physical activities - activities that take light physical effort and you can breathe normally e.g. walking to travel from place to place and other walking you might do for recreation or other light exercise.
On how many days in the last 7 days did you do each type of physical activity for 10 minutes or more ?

  0 1 2 3 4 5 6 7
Vigorous physical activities 
Moderate physical activities 
Light physical activities 

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* 58. Those assisting others in their family, whānau, or aiga often have a health condition or disability themselves. We'd like to understand more about this to plan the right information and supports for carers. Do you have a disability or health condition?

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* 59. Carers often experience injuries while supporting someone else. We'd like to understand more about carers and injury. Have you been injured in your caring role and did you seek treatment or make a claim with ACC?

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* 60. Two last questions!
Do you feel valued and supported in your caring role? Tick all that apply. 

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* 61. Do you think New Zealand carers were well informed and supported by the Government and its agencies during the COVID-19 pandemic?

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* 62. Please tell Carers NZ and the Carers Alliance what they most need to focus on to help carers. Suggest three things - or we welcome any comments to guide our work planning for carers.

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* 63. Please leave your details below if you'd like us to enter you into our draw for 10 $100 retail vouchers. Those who provide contact details will also receive our survey report later in the year. 
Thank you for completing the first NZ State of Caring survey - we are so grateful for your help so New Zealand can learn more about its family, whānau, and aiga carers.

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