CPAP Support Materials Carers Survey

Baywater Healthcare is working on behalf of NHS England to create accessible information for people that use a device known as a CPAP machine. CPAP is a device that is used to treat patients with Sleep Apnoea – a type of breathing problem that happens when the person is asleep. We are working with NHS England to produce information about CPAP for people with a learning disability, autistic people, health care professionals, paid and unpaid carers.

We would like your help as a paid or unpaid carer to understand the difficulties experienced by people with a learning disability and/or autistic people who are prescribed CPAP.

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* 1. Can you please confirm if you currently work with a person/people prescribed CPAP who have a learning disability or are autistic?

Yes - people with a learning disability

Yes - autistic people

Yes - both

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* 2. Have you been given any materials which are in an accessible format for people who have a learning disability to help them understand why they need to use a CPAP machine?

Yes

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* 3. Have you been given any materials which are in an accessible format for autistic people to help them understand why they need to use a CPAP machine?

Yes

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* 4. How have you been given help to support the people you care for with their CPAP machine?

Leaflets or booklet

I/someone demonstrates to the patient

I/someone explains to the patient

Videos

Anything else (please state)

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* 5. If you been provided with support, do you find that people find some is more useful than others? Please rank the materials usefulness as reported to you by patients (1 most useful, 5 least useful):

	1	2	3	4	5
Leaflets or booklets	Leaflets or booklets 1	Leaflets or booklets 2	Leaflets or booklets 3	Leaflets or booklets 4	Leaflets or booklets 5
Demonstrations to the patient	Demonstrations to the patient 1	Demonstrations to the patient 2	Demonstrations to the patient 3	Demonstrations to the patient 4	Demonstrations to the patient 5
Explaining to the patient	Explaining to the patient 1	Explaining to the patient 2	Explaining to the patient 3	Explaining to the patient 4	Explaining to the patient 5
Videos	Videos 1	Videos 2	Videos 3	Videos 4	Videos 5

Something else – please list

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* 6. If we produce videos and offer signing, would your patients prefer:

British Sign Language (BSL)

Makaton

None

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* 7. What information and in what format would you find helpful for you and the people you care for?

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* 8. Usually, people are advised to use their CPAP machine every night. On average, how regularly do you find the people you care for use their CPAP therapy?

Every night

Most nights

Once a week

Occasionally

Never

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* 9. What do you believe are the barriers to using CPAP devices for the people you care for? (Tick all that apply)

They don’t understand how to use it

They don’t understand what it is for

They don’t like how it feels

They don’t like the noise

It makes their mouth feel dry

They don’t like the mask

It upsets other people when they use it

They or I am worried about the cost of running the machine

Anything else (please state)

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* 10. Do you understand the implications for patients if they do not use their CPAP machine as prescribed?

Yes

I am not sure

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* 11. If you answered yes to Q10, what do you understand the implications to be?

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* 12. What interventions or support have you found to be successful in supporting people with a learning disability and autistic people to use their CPAP machine as prescribed?

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* 13. What other support do you think would help these patient groups to use their CPAP device?

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* 14. What type of mask do the people you care for typically use?

Full face mask

Nasal mask

Nasal pillow mask

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* 15. What concerns do people report in relation to wearing their CPAP mask?

It is uncomfortable

It doesn’t fit

It makes them feel like they are suffocating

It comes off when they are asleep

Anything else

Thank you for taking the time to complete our survey.