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Greetings / Kia ora / Kia orana / Malo e lelei / Talofa lava

In 2021 more than 1,600 of you completed our State of Caring survey – an amazing number! We are so grateful to every family carer who took the time to respond.

It’s incredibly important for us to be able to use your responses in our policy, campaigning and advocacy work. Last year, we used your responses to advocate for positive change for all carers and they also helped Carers NZ and the Carers Alliance shape our priorities in areas like how to protect carers’ physical, mental, and financial wellbeing. These insights led to our wecare.nz campaign and our briefing to Incoming Ministers, to ensure focus on your important role and what you need to stay well and keep going.

We’re repeating this survey every two years to build a picture about how Aotearoa’s family carers are faring over time. This year’s survey focuses on several areas including health, employment and finances. Your feedback will enable us to be more focused in our work and communicate to decision makers what really matters to you. Knowing the issues carers face in 2024 and beyond couldn't come at a more important time.

This is the most extensive survey into carers’ experiences in NZ, so it may take around 20-30 minutes to complete. You might want to grab a cuppa and get comfy! We know how busy carers are, so don’t worry if you don’t get to the end – we'll receive your responses even if you don’t finish. You can also skip questions if you don’t have much time. However, the more information you give us, the better we can build a good picture about how caring affects different people. We are really keen to hear about your experiences – good or bad – in as much detail as possible, as this helps us understand what it is like to be a family carer.

At the end of the survey. you can leave your contact details (optional) to enter our draw for 20 $100 retail vouchers, and to receive our survey report when it's available.

Any comments you provide will not be identified as yours unless you give us permission to contact you, and we get agreement from you to do so. This survey is confidential, and your personal details will never be passed onto a third party. We will publish the anonymised results of this survey later this year.

Please note that State of Caring is only for people who provide care and support for someone in your family, friends, whānau or āiga who is frail, unwell, or has a disability or health condition. It’s not for those who work in the care sector.

We are very grateful to each and every person who takes the time to complete the survey.

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 frail, unwell, injured, or has a health condition or disability.

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* 2. If yes, how many people are you currently supporting? Otherwise skip to Question 3.

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* 3. If you cared for someone in the past but are no longer doing so, when did you stop caring?

About you in your caring role
The rest of the survey is worded for those who are currently caring for a friend or family member. 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.

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* 4. Where in NZ do you live?

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

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* 6. How long have you been caring for the person/people you currently care for? If you are no longer caring, please indicate how long you cared for the person/people you supported.

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* 7. For about how many hours a week do you / did you provide care?

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* 8. If you share caring with another person/people how many hours a week do they provide care?

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* 9. Who do you care for? (Select all that apply)

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

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* 11. How would you describe their health 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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* 12. How old are you?

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* 13. What is your gender?

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

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* 15. What type of care or support do you provide? (select all that apply)

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* 16. Where does the person / people you care for live? (select all that apply)

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* 17. If relevant, how far away from you does the person / people you are caring for live? (select all that apply)

Assessing your needs as a carer

In your role as a carer, you may have been involved or completed several needs assessments. These could include ACC special needs assessments and/or a disability needs or older person's assessment. These assessments should 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).

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* 18. Did you feel your most recent assessment/s include questions about your needs as a carer?

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* 19. To what extent did you feel any of the needs assessment processes you have been involved in 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 child to adult services
Your ability to be paid for at least some of your caring work

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* 20. 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?

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

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* 21. 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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* 22. 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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* 23. Have you or the person you care for been impacted by any other emergency in the last 12 months such as extreme weather, extended loss of power, earthquake?

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

Support with caring
We'd like to hear more about the kinds of support that carers are getting or not getting.

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* 26. Please let us know whether you or those you support have access to any of the following.

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

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* 28. 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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* 29. If you have experienced changes to services in this past year was this because? (please tick all that apply)

Funding support

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

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* 31. Types of funding received by the person or people I support and / or me to support my caring role. (select all that apply)

Resident family carers payment
We are particularly interested in understanding more about the resident family carers payment, for those who receive payment for at least some of their caregiving for a family member. We are aware of many other ‘payments/benefits' that are available but are specifically interested in your feedback about the resident family carers payment.

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* 32. Do you currently receive a resident family carers payment for the care you provide?

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* 33. If you do NOT receive this payment, are you aware that as a carer you may be eligible for this funding?

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* 34. If you DO receive this payment, do you feel the amount you are paid is fair and reflects the level of care you provide?

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* 35. If you DO receive this payment, in your opinion is the best way for you to receive this payment? Please select the option that best applies to you

Taking wellbeing breaks / respite
As a family carer it is important that you feel able to have breaks from your caring role to support your own wellbeing. Whilst friends or family might have helped you take a break, in this section of the survey we are specifically interested in wellbeing breaks / respite that are funded or paid for.

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* 36. Over the last 12 months have you received funding to take a break and/or access respite items or services?

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* 37. If you answered yes, were you able to take enough of a break or did the funding you received cover purchases to adequately support your wellbeing as a carer?

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* 38. If you answered yes, were there enough paid respite or break options available to you and were you able to access the options that were right for you?

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* 39. If you did NOT receive funding to take a break and/or access respite support or services over the last 12 months, what were the reasons? (please select ALL that apply )

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.

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* 40. Do you or the person or people you care for use the internet for any of the following? (select all that apply)

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* 41. Do you or the person or people you care for use any of the following monitoring technologies? (select all that apply)

Money and finance

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* 42. Which of the following describe your financial situation. (select all that apply)

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* 43. If you are struggling to make ends meet, how are you coping? (select all that apply)

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* 44. Please indicate how much of your own income or savings you use 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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* 45. Thinking about cost of living increases, to what extent do you agree with the following?

  Very positive impact Somewhat positive impact No impact Somewhat negative impact Very negative impact
How are living cost increases impacting your physical and/or mental health?
How are living cost increases impacting your ability to manage financially?
How are living cost increases impacting your ability to afford care and support costs? (e.g. paying for equipment in the home, transport, technology, relief care, etc)
How are living cost increases impacting on your ability to plan for the future?
Your caring role

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

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* 47. 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 āiga? (select all that apply)

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* 48. If yes, what impact did this have on you? (select all that apply).

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* 49. Have you been affected by any of the following? (select all that apply).

Paid work and caring

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* 50. We would like to hear more from carers about their experiences of paid work and caring. Please select the situation that best fits you.

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* 51. What is your current employment situation? Please select the situation that best fits you

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* 52. If you are employed, is your employer aware that you have caring responsibilities and how supportive are they?

Preparing for retirement
This section asks questions about retirement. This means when you plan to stop paid work and/or reach an age when you eligible for superannuation i.e. at 65 yrs of age.

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* 53. How will you pay for your retirement? (select all that apply).

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* 54. Has your ability to plan and save for your retirement been affected by your caring responsibilities?

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

Loneliness and social connection
We want to understand your experiences of how caring can affect relationships and social isolation.

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* 56. How often do you experience feelings of loneliness?

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* 57. Have you ever felt lonely or isolated as a result of your caring role? (Select all that apply)

Health and wellbeing
Please tell us a bit about your own health and wellbeing.

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* 58. Please rate your physical and mental health?

  Very Good  Good  Fair  Bad Very Bad 
Physical health
Mental health
Life satisfaction
We'd like to be able to compare carers' wellbeing experiences with national wellbeing statistics.

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* 59. Overall, how satisfied are you with your life at the moment?

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

Depression and / or anxiety

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* 61. Are depression and / or anxiety a concern for you?

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* 62. Overall, how anxious did you feel yesterday

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.

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* 63. Do your caring responsibilities impact on the time you would like to spend on exercise / physical activity?

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.

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* 64. 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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* 65. Do you have a disability or health condition?

Carers and injuries

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* 66. Have you been injured in your caring role and did you seek treatment or make a claim with ACC?

COVID-19 experiences
We'd like to understand more about how the pandemic affected family carers

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* 67. Is COVID-19 a concern for you and your household?

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* 68. Have you had COVID-19 (at any time)?

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* 69. Has anyone you care for had COVID (at any time)?

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* 70. Pandemic support. Please select the most appropriate statement for you.

Almost there - final questions!

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* 71. Do you feel valued and supported in your caring role?

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* 72. Please tell us what we most need to focus on to help New Zealanders in caring roles. Suggest three things - or we welcome any comments to prioritise the support we give to carers.

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* 73. Please leave your details below if you'd like us to enter you into our draw for twenty $100 retail vouchers. Those who provide contact details will also receive our survey report later in the year.

Thank you for completing the second State of Caring survey - we are so grateful for your help so New Zealand can learn more and truly support its 1m+ family, whānau and āiga carers.

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