Meaningful Conversations

Meaningful conversations between doctors and People with Disabilities.

What methods of support help People with Disabilities talk with doctors, and what barriers to meaningful communication might there be?
The following Questionnaire is about how People with Disabilities communicate with healthcare professionals.

If this applies to you, your input and advice would be really welcome. You don’t need to answer every question if you don’t want to, but every answer helps.

There is a "save" option at the bottom of the questions, next to "submit" if you would like to come back to this questionnaire at a later date.
What country do you live in?
How would you like to fill out this form?

As a Person with a DisabilityAs a Carer or family member of a Person with a DisabilityAs a Healthcare professional
How old are you?
What disability(s) do you have?
Is anyone helping you fill out this survey?

YesNo
How often do you visit a doctor?

Every WeekEvery MonthEvery 6 MonthsEvery YearLess often than a Year
Do you go to the doctor because of your disability?

I usually see my doctor to treat symptoms related to my disabilityI usually see my doctor because of complications directly related to my disabilityI usually see my doctor for other reasons, unrelated to my disabilityOther
What kind of things do you do before you visit a doctor?
Do you go by yourself when you visit a doctor?

YesSometimesNo
Who do you take with you when you visit a doctor?

FamilyPartnerFriendSupport WorkerTranslatorOther
Do you visit the same doctor every time you go?

Same doctor every timeSometimes the same doctor, and sometimes a different oneA different doctor every time
Have you ever talked to the doctor over the phone, or over a video-call?

Yes, oftenSometimesNot usuallyNever
How do you prefer to talk to your doctor?

Prefer to talk to my doctor in personPrefer to talk to my doctor over the phonePrefer to talk to my doctor video-call
Do you use a type of Sign Language?

YesSometimesNo
Do you ever use any types of devices to help you talk to your doctor?

YesNo
What types of devices do you use to talk to your doctor?
Is it ever hard to understand what the doctor tells you?

Yes, oftenSometimesNot usuallyNever
Do you like to use Easy-Read to help you learn confusing things?

YesNoNot sure what that is
Has your doctor ever given you Easy-Read?

YesNo
Does your doctor ever not understand what you are saying?

Yes, all of the timeOften, but not alwaysNot usuallyNever
If you and your doctor don't understand each other, what needs to change?

Me and my doctor should both try and fix the problemMy doctor should fix the problemI should fix the problemMy doctor thinks I should fix the problem, but I think they should fix the problemI don't think anyone needs to fix the problemOther
How do you like the doctor to explain confusing things to you?
What are some things that your doctor does to help make you feel comfortable?
What supports and comforts do you like to have when you visit your doctor?
What disability(s) does the individual you care for have?
What relationship do you have with the individual?

PartnerFamilyFriendSupport Worker / CarerTranslatorOther
Are doctor’s visits a big part of their life?

Yes, a lot of interaction with the healthcare sectorNo, only incidental visits
How often do they visit a doctor or any other specialist healthcare providers?

More than once a weekOnce a weekLess than once a week, but more than once a monthOnce a monthLess than once a month, but more than once every 6 monthsOnce every 6 monthsLess than once every 6 months
Are the reasons for their usual visits related to their disability?

They usually see their doctor to treat symptoms related to their disabilityThey usually see their doctor because of complications directly related to their disabilityThey usually see their doctor for other reasons, unrelated to their disabilityOther
What kind of things do you and they do before you visit a doctor? How do you and they prepare?
Is transport a big consideration when going?

YesNo
Do they use public transport?

YesNo
Do they use a mobility device? (Wheelchair, Powered wheelchair, Crutches, Frames, etc.) If so, what kind?
Do they go in by themselves when they visit a doctor, or do you go in with them?

I go in with them to talk to the doctorI stay in the waiting room, or outsideOther
Do they usually visit the same doctor?

Same doctor every timeSometimes the same doctor, but sometimes a different oneA different doctor every time
If yes, or sometimes, do you or they have a good relationship with the doctor?

YesNo
Has the individual ever spoken to the doctor over the phone, or on a video-call, instead of seeing them in person?

Yes, oftenSometimesNot usuallyNever
If they have before, do you or they prefer this to seeing them in person?

Prefer over the phonePrefer video-callPrefer in person
Do they use a type of Sign Language?

YesNoSometimes
Do they ever use any type of Augmentative or Alternative Communication device (AAC)?

YesNo
If yes, what devices do they use?
Do they ever have trouble understanding what the doctor is telling them?

Yes, oftenSometimesNot usuallyNever
Do they like to use Easy-Read to help learn complicated information?

YesNo
If yes, has their doctor ever provided information to them in Easy-Read?

YesNo
Does the doctor ever have trouble understanding what the individual is saying?

Yes, 100% of the timeOften, but not alwaysNot usuallyNever
If there is ever any trouble understanding each other when they talk with their doctor, who do you think is responsible for overcoming it?
What are some things that the doctor does to help make the visit more comfortable?
Are there any communication-specific issues that stand out when visiting a doctor?
Does the doctor, or any of the other staff in the office, provide support systems or accommodations to help make the visit go smoothly? How?
Do you find the need to debrief after a doctor’s visit?

YesNo
Are there things that need to be re-explained or discussed with the individual?

YesNo
What are some of the biggest barriers that you face when supporting the individual to access healthcare services?
Do you work in public or private healthcare?

PublicPrivate
What's your role within the healthcare sector?
Roughly, how many patients do you see a day?
Of those patients you see within a standard day, how many do you estimate live with a disability?
Are their reasons for seeing you related to their disability?

Usually for symptoms related to their disabilityUsually for complications that are a result of disabilityUsually for reasons unrelated to their disabilityOther
Have you ever fulfilled your role by providing over-the-phone care, or by using a video-call?

Yes, alwaysYes, sometimesNo, never
Do any positives or negatives stand out, in regard to communicating via phone or video-call?
Have you treated patients that use Augmentative or Alternative Communication (AAC)?

YesNoNot sure what that is
Have you treated patients that use text-to-speech, refreshable braille displays, or related devices?

YesNoNot sure what that is
Have you treated patients who prefer to use Easy-Read resources?

YesNoNot sure what that is
If so, were you able to find suitable resources to provide to your patients?

Yes, readily availableYes, but only limited resourcesNo, nothing that was applicableNo, none available at all
If a patient with an intellectual disability doesn’t understand a concept you are explaining to them, and they don’t have a carer/translator/support person with them to help, how would you ensure they receive information and adequate care?
Have you received any training or resources to help you talk with patients who may have a communication or intellectual disability?

Yes, bothYes, training onlyYes, resources onlyNo, I had to self-source informationNo, I have not received or self-sourced any information
On a scale of 1 to 10, how confident are you in being able to meaningfully communicate with patients who have a disability?

1

2

3

4

5

6

7

8

9

10

1 is Not confident at all, 10 is Very confident
On a scale of 1 to 10, how well-equipped is your office or workspace to assist you and your patients in communicating meaningfully, in the case they have a communication or intellectual disability?

1

2

3

4

5

6

7

8

9

10

1 is Very poorly equipped, 10 is Equipped for any situation
In your workplace, what technologies, tools, or devices are currently in place to help you communicate with your patients?
In your workplace, what systems, supports, or accommodations are currently in place to help you communicate with your patients?
Thank you so much for your time and effort!

If you would like to discuss any of your answers or would be willing to talk about the topic further, please feel free to email me at: kdun2491@uni.sydney.edu.au
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Meaningful conversations between doctors and People with Disabilities.