This survey is focussed on the education and information about spotting symptoms of adrenal crisis and emergency/‘sick day’ management of your child’s adrenal insufficiency.

Question Title

Click on this link if you would like more information about the project or how we use the information you share.

Click on <a href="https://figshare.com/s/a19e949dc78a192996ff" rel="nofollow" target="_blank">this link</a> if you would like more information about the project or how we use the information you share.

Question Title

* Please tick the box below to confirm that you

- have read the study information,

- are happy to take part by filling out the survey

- know that you will not be able to take your answers back once you click submit at the end of the survey.

Tell us a little bit about you first (so we know a little bit about who has answered the survey)

Question Title

* How old is your child?

Question Title

* How long has your child been diagnosed with adrenal insufficiency?

Question Title

* What is your child’s underlying diagnosis?

Question Title

* Does your child have any other health conditions?

Question Title

* Does your child have any learning difficulties or neurodivergence e.g. Autism, ADHD, dyslexia?

Question Title

* Does your child take any other hormone replacement therapy? e.g. desmopressin, growth hormone

Education about Emergency/Sick Day management

Question Title

* What education have you had about emergency or ‘sick day’ management for your child’s Adrenal Insufficiency? e.g. what content did it include?

Question Title

* Was this education/information delivered to.....

Question Title

* Were you educated on what is an adrenal crisis?

Question Title

* Was there a demonstration of how to inject hydrocortisone?

Question Title

* Was there an opportunity to practice how to inject hydrocortisone?

Question Title

* Who delivered this education? (tick all that apply)

Question Title

* How was the education delivered? (tick all that apply)

Question Title

* How easy was it for you to understand the information?

Question Title

* Did anyone check with you whether you had understood the information delivered?

Question Title

* Do you think the education gave you the knowledge and skills needed to manage your child’s sick days?

Question Title

* Do you think the education gave you the confidence to manage sick days or emergency episodes?

Question Title

* Do you think the education gave you the knowledge to spot signs of adrenal crisis in your child?

Question Title

* What could have improved the content of the education?

Question Title

* What could have improved the delivery of the education?

Question Title

* Have you had any refreshers or updates to this education?

Current Knowledge

Question Title

* How would you rate your current level of knowledge about sick day rules and management?

Question Title

* How would you rate your current level of confidence in managing sick day dosing and management?

Question Title

* Do you know your child’s sick day doses?

Question Title

* Do you know when to give sick day doses?

Getting Information

These questions are about where would you look or go to for information about emergency/sick day management for adrenal insufficiency.

Question Title

* When my child was first diagnosed......

Question Title

* Now....

Question Title

* What information about sick day rules or emergency management do you think is important for parent/carers to know?

Question Title

* Is there any information about sick day rules or emergency management you would like to know?

Question Title

* What would be your preferred way to gain information about sick day rules?

Sharing Information

Question Title

* Who do you share information with about the management of your child’s emergency episodes or sick days? (tick all that apply)

Question Title

* What information do you share with these people?

Question Title

* Are there any resources which would help you share information with school/college/teachers?

Question Title

* Have you experienced any problems with health care staff knowing about adrenal insufficiency sick day management?

Thank you so much for taking part in this survey.

If you would like to take part in a group discussion (online or face to face) about what good education and information (content and delivery) should look like for families, then please contact Lucy on brayl@edgehill.ac.uk

If your child is aged 10-16 years and you are happy for them to also share their opinions about information and education then please tick the box to show you are happy for them to take part and then click ‘next section’, this will save your responses and open the next section for them to complete.

Question Title

* If your child is also sharing their ideas

Question Title

Please see this sheet for the contact details of support organisations

Please see this sheet for the contact details of support organisations

T