Caregiver Survey

Section 1 of 10

About You

A few questions to help us understand who is caring for someone with a respiratory condition. All responses are anonymous.

Q1. How old are you?

Q2. What gender do you identify with?

Woman Man Non-binary / gender-diverse Prefer not to say

Q3. What is your relationship to the person you care for?

Q4. How long have you been a caregiver for this person?

Q5. Do you live with the person you care for?

Yes, we live together No, but I live close by (within 30 minutes) No — I travel a significant distance to help

Q6. Has being a caregiver affected your ability to work or maintain your own employment?

No — I work the same as I would otherwise Yes — I've had to reduce my hours or take leave Yes — I had to leave paid work entirely to care for them I've made a flexible arrangement that allows me to do both I was not working before becoming a caregiver I am retired

Section 2 of 10

The Person You Care For

These questions help us understand the health situation you're navigating every day.

Q7. What respiratory condition does the person you care for have? (Select all that apply)

Q8. How would you describe their ability to get around and do things on most days? Choose the option that best describes them — adapted from the mMRC Dyspnea Scale.

They can do most things without breathing limiting them much Breathing slows them down on hills or stairs, but they manage on flat ground They walk slower than others their age due to breathing, or have to stop after a short distance on flat ground They stop to catch their breath after walking about 100 metres (one block) on flat ground They are too breathless to leave the house, or breathless while dressing or undressing

Q9. What respiratory equipment does the person you care for use at home? (Select all that apply)

Q10. How many times has the person you care for been admitted to hospital or visited the emergency department for their respiratory condition in the past 12 months?

Q11. On a scale of 1–10, how would you rate the overall severity of their condition right now?

Very mildExtremely severe

Section 3 of 10

Your Caregiving Role

Tell us about the practical side of your caregiving role — the daily work most people never see.

Q12. How many hours per day do you typically spend on caregiving tasks?

Q13. Which of the following caregiving tasks are you regularly responsible for? (Select all that apply)

Q14. When you first took on the caregiving role, how well prepared did you feel?

Very prepared — I felt ready and had the information I needed Somewhat prepared — I understood the basics but had gaps Not very prepared — I was figuring things out as I went Not at all prepared — I was thrown in without guidance

Q15. Have discussions about advance care planning or end-of-life wishes ever taken place with the healthcare team? This includes conversations about resuscitation preferences, goals of care, or what the person would want in a crisis.

Yes — and we were meaningfully involved in those discussions Yes, briefly — but it felt rushed or incomplete No — we raised it but the team didn't engage fully No — it has never come up We don't feel this is relevant yet for our situation

Section 4 of 10

Equipment & Emergency Preparedness

Managing respiratory equipment at home — and knowing what to do in a crisis — is one of the heaviest parts of this role. We want to understand how supported you feel.

Q16. How confident are you in setting up, troubleshooting, and maintaining the respiratory equipment?

Not confident at allCompletely confident

Q17. Have you experienced any of the following equipment-related problems? (Select all that apply)

Equipment failure at a critical or frightening moment Insurance delays in approving or replacing equipment No training provided on how to use the equipment safely Supply shortages — running out of filters, masks, tubing, or oxygen Difficulty travelling or leaving home because of equipment No one to call when equipment problems arise outside office hours Difficulty getting the person to use equipment consistently None of the above

Q18. Do you have a written respiratory action plan or emergency plan in place — something that tells you exactly what to do if their breathing deteriorates?

Yes, and I feel confident using it Yes, but I'm not fully sure how to use it No — we've been told to call emergency services if something goes wrong No — nothing has been put in place I'm not sure if one exists

Q19. If the person you care for uses oxygen at home — how has that changed your daily life as a caregiver? If they don't use home oxygen, you can leave this blank or describe any other equipment that has had a major impact.

Section 5 of 10

Medication Management

Respiratory medications are often complex. We want to understand the real-world challenges of managing them.

Q20. What is your role in managing their medications?

I manage everything — ordering, organising, and administering I help with some of it — we share the responsibility They manage their own medications, but I help when needed They manage their medications independently

Q21. Roughly how many separate medications or devices does the person use daily — including inhalers, pills, nebulized treatments, and devices?

Q22. What are the biggest medication challenges you face? (Select all that apply)

Cost — medications are unaffordable or only partially covered Getting them to take medications as prescribed Managing distressing side effects Too many medications to reliably track Ensuring correct inhaler or nebulizer technique Keeping up with refills and prescription renewals Prior authorizations slowing access to needed medications No significant medication challenges

Section 6 of 10

Your Wellbeing

Your wellbeing matters as much as the person you care for. Please answer honestly — there are no wrong answers here. These questions draw on the Caregiver Strain Index and other validated caregiver burden measures.

Q23. Over the past month, how often have you felt each of the following?

Statement	Never	Sometimes	Often	Almost always
Caregiving is physically tiring
There is not enough time for myself
I feel emotionally drained
I feel cut off from friends and family
Caregiving has put a strain on my finances
I worry about what will happen in the future
I feel like I have no choice but to keep going

Q24. Over the past 2 weeks, how often have you felt down, anxious, or unable to stop worrying due to your caregiving responsibilities?

Not at all Several days More than half the days Nearly every day

Q25. Rate your current overall caregiver stress level.

No stress at allExtreme stress

Q26. Have you personally experienced any of the following as a result of caregiving? (Select all that apply)

Q27. Have you ever received support specifically for your own wellbeing as a caregiver?

Yes, and it genuinely helped Yes, but it wasn't very accessible or helpful No, but I know where support is available No — I honestly don't know where to look No — I haven't had the time or bandwidth to seek it out

Section 7 of 10

Communication with the Healthcare Team

Caregivers often act as the bridge between the patient and the healthcare team — but that role isn't always recognised or supported.

Q28. How often do each of the following happen in your experience with the healthcare team?

Statement	Never	Sometimes	Often	Always
I am included in medical appointments as a partner, not just an observer
Providers explain things in plain language I can act on
My concerns and observations are taken seriously
Discharge instructions are clear and actionable — not just paperwork
I know exactly who to call and what to do in a breathing emergency
The team checks in on how I'm coping as a caregiver

Q29. Have you ever felt dismissed or ignored when advocating for the person you care for?

Never Once or twice Regularly — it's a pattern Almost always — I expect it now

Q30. After a hospitalisation, how well were you — as the caregiver — prepared to manage the transition home? If there has been no hospitalisation, please skip this question.

Not applicable — no hospitalisations Very well — I felt clear on what to do and had the support I needed Somewhat — I had some guidance but significant gaps Not well — we were discharged with minimal preparation Not at all — it was chaotic and I felt completely unsupported

Section 8 of 10

Access to Support & Your Biggest Challenges

We want to understand where caregivers are being left behind — and what would make the greatest difference.

Q31. What is the single hardest part of being a respiratory caregiver for you?

Q32. Which of the following have you struggled to access for yourself as a caregiver? (Select all that apply)

Respite care — someone to give you a real break Mental health or counselling support for yourself Financial assistance programs Connection with other caregivers who truly understand Reliable education about the condition you're managing Home health aides or visiting nurse support Palliative care or emotional support for both of you I've been able to access what I need

Q33. Has the financial cost of caregiving — time off work, out-of-pocket costs, equipment, medications — been a significant burden for your household?

No — we've been able to manage financially Somewhat — it's a noticeable strain but manageable Yes, significantly — we've had to make real sacrifices Severely — it has put us in financial hardship

Q34. How supported do you feel by the healthcare system in your role as a caregiver?

Completely invisible to the systemFully recognised and supported

Section 9 of 10

What You Wish Healthcare Understood

This is the most important section. Your words here go directly into the research Nevidra presents to healthcare teams, policymakers, and clinical educators. Speak freely.

Q35. What do you wish doctors, nurses, and respiratory therapists truly understood about what it's like to be a respiratory caregiver at home?

Q36. What one change in the healthcare system would make the greatest difference for caregivers like you?

Q37. How valued do you feel as a caregiver by the healthcare system?

Invisible to the systemFully valued

Section 10 of 10

Final Thoughts

Almost done. Thank you for staying with us through every question. This final space is yours.

Q38. Looking back, what would have helped you most when you first became a caregiver for someone with a respiratory condition? (Select all that apply)

Clear, plain-language education about the condition and what to expect A written action plan for breathing emergencies Hands-on training for all equipment they use Mental health support offered proactively — not something I had to find myself Connection with other caregivers in the same situation A single care coordinator who knew our whole story Guidance on financial assistance and insurance navigation Information about respite care options An honest conversation about the long-term trajectory and what to plan for

Q39. Is there anything else you'd like to share — something we haven't asked that you feel is important for the research team to understand?

Q40. Would you be willing to participate in a future interview or focus group about your caregiving experience? (Optional)

Yes, I'd be interested Maybe — I'd want to know more first No, but thank you for asking

Your caregiving experience
deserves to be heard.

About You

The Person You Care For

Your Caregiving Role

Equipment & Emergency Preparedness

Medication Management

Your Wellbeing

Communication with the Healthcare Team

Access to Support & Your Biggest Challenges

What You Wish Healthcare Understood

Final Thoughts

Thank you for sharing.

Stay connected with Nevidra

No problem at all.

Your caregiving experiencedeserves to be heard.

Your consent matters.

What you're agreeing to

Su consentimiento importa.

A lo que usted está de acuerdo

About You

The Person You Care For

Your Caregiving Role

Equipment & Emergency Preparedness

Medication Management

Your Wellbeing

Communication with the Healthcare Team

Access to Support & Your Biggest Challenges

What You Wish Healthcare Understood

Final Thoughts

Thank you for sharing.

Stay connected with Nevidra

No problem at all.

Your caregiving experience
deserves to be heard.