Parents and Carers of Children and Young People with Migraine Survey 2018 - UK Headache Network

The Migraine Trust is working with experts to develop a framework of optimal care for children with headache and migraine.

Research has shown that migraine can have a detrimental effect on the lives of children and young people. Migraine can, for example, impact upon self-esteem, school attendance, education, making friends and taking part in activities. In order to address this The Migraine Trust wishes to support children and young people, their parents and carers.

We have put together a survey to help us determine what support is required, the demand for such support and how best it should be structured. We invite parents and carers of children and young people with migraine to complete the questionnaire.

Your answers will be treated confidentially and insights taken from the overall results of the survey to be used publicly. United Kingdom residents only please.

The survey should take 10 minutes

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* 1. Where in the UK do you live?

Greater London

South East England

South West England

East of England

East Midlands

West Midlands

Yorkshire and the Humber

North East England

North West England

Northern Ireland

Scotland

Wales

Channel Islands or the Isle of Man (Crown Dependencies)

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* 2. How old is the child or children with migraine for whom you care ?

Under 5 years old

5 - 11 years old

11-16 years old

16 years old +

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* 3. What is your child's gender?

Male

Female

Prefer not to say

Prefers to be described as

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* 4. What headache condition does your child live with?

Migraine

Tension type headache

Other (please specify)

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* 5. Has your child had a formal diagnosis of their condition

Yes

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* 6. How long has it taken for your child to get a formal diagnosis of their condition?

less than a month

less than three months

less than 6 months

less than a year

not yet received a diagnosis

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* 7. What symptom does your child experience when having a headache or migraine (please tick all that apply)

Nausea

Vomiting

Low mood

Poor concentration

Tiredness

Abdominal cramps

Light sensitivity

Noise sensitivity

Smell sensitivity

Dizziness

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* 8. How does your child's headache or migraine affect you and your family?

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* 9. Which areas of your child's life are affected by headache or migraine? Please rank in terms of your greatest concern

	Very concerning	Concerning	Somewhat concerning	Rarely a concern	Not a concern at all
School attendance	School attendance Very concerning	School attendance Concerning	School attendance Somewhat concerning	School attendance Rarely a concern	School attendance Not a concern at all
Learning and educational attainment	Learning and educational attainment Very concerning	Learning and educational attainment Concerning	Learning and educational attainment Somewhat concerning	Learning and educational attainment Rarely a concern	Learning and educational attainment Not a concern at all
Sitting tests and exams	Sitting tests and exams Very concerning	Sitting tests and exams Concerning	Sitting tests and exams Somewhat concerning	Sitting tests and exams Rarely a concern	Sitting tests and exams Not a concern at all
Making friends	Making friends Very concerning	Making friends Concerning	Making friends Somewhat concerning	Making friends Rarely a concern	Making friends Not a concern at all
Participation in sports	Participation in sports Very concerning	Participation in sports Concerning	Participation in sports Somewhat concerning	Participation in sports Rarely a concern	Participation in sports Not a concern at all
Self-confidence	Self-confidence Very concerning	Self-confidence Concerning	Self-confidence Somewhat concerning	Self-confidence Rarely a concern	Self-confidence Not a concern at all
Social activities with friends and family	Social activities with friends and family Very concerning	Social activities with friends and family Concerning	Social activities with friends and family Somewhat concerning	Social activities with friends and family Rarely a concern	Social activities with friends and family Not a concern at all
Mental health	Mental health Very concerning	Mental health Concerning	Mental health Somewhat concerning	Mental health Rarely a concern	Mental health Not a concern at all
Other	Other Very concerning	Other Concerning	Other Somewhat concerning	Other Rarely a concern	Other Not a concern at all

Other (please specify)

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* 10. How would you rate you rate the information of headache or migraine from the following sources? ( Please rank all those that apply)

	Very Good	Good	Acceptable	Poor	Very Poor	Not used
The Migraine Trust website	The Migraine Trust website Very Good	The Migraine Trust website Good	The Migraine Trust website Acceptable	The Migraine Trust website Poor	The Migraine Trust website Very Poor	The Migraine Trust website Not used
The Migraine Trust information and advocacy service	The Migraine Trust information and advocacy service Very Good	The Migraine Trust information and advocacy service Good	The Migraine Trust information and advocacy service Acceptable	The Migraine Trust information and advocacy service Poor	The Migraine Trust information and advocacy service Very Poor	The Migraine Trust information and advocacy service Not used
Family	Family Very Good	Family Good	Family Acceptable	Family Poor	Family Very Poor	Family Not used
Friends	Friends Very Good	Friends Good	Friends Acceptable	Friends Poor	Friends Very Poor	Friends Not used
GP	GP Very Good	GP Good	GP Acceptable	GP Poor	GP Very Poor	GP Not used
Nurse	Nurse Very Good	Nurse Good	Nurse Acceptable	Nurse Poor	Nurse Very Poor	Nurse Not used
Neurologist	Neurologist Very Good	Neurologist Good	Neurologist Acceptable	Neurologist Poor	Neurologist Very Poor	Neurologist Not used
Forums	Forums Very Good	Forums Good	Forums Acceptable	Forums Poor	Forums Very Poor	Forums Not used
Blogs	Blogs Very Good	Blogs Good	Blogs Acceptable	Blogs Poor	Blogs Very Poor	Blogs Not used
Social media	Social media Very Good	Social media Good	Social media Acceptable	Social media Poor	Social media Very Poor	Social media Not used
Teachers	Teachers Very Good	Teachers Good	Teachers Acceptable	Teachers Poor	Teachers Very Poor	Teachers Not used
School	School Very Good	School Good	School Acceptable	School Poor	School Very Poor	School Not used
Internet	Internet Very Good	Internet Good	Internet Acceptable	Internet Poor	Internet Very Poor	Internet Not used
NHS Choices	NHS Choices Very Good	NHS Choices Good	NHS Choices Acceptable	NHS Choices Poor	NHS Choices Very Poor	NHS Choices Not used
Pharmacy	Pharmacy Very Good	Pharmacy Good	Pharmacy Acceptable	Pharmacy Poor	Pharmacy Very Poor	Pharmacy Not used
Other	Other Very Good	Other Good	Other Acceptable	Other Poor	Other Very Poor	Other Not used

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* 11. How would you rate the current support and advice available for parents/carers with a child that lives with headache or migraine

	Very good	Good	Acceptable	Poor	Very poor	Not sure/ unable to say
Lifestyle	Lifestyle Very good	Lifestyle Good	Lifestyle Acceptable	Lifestyle Poor	Lifestyle Very poor	Lifestyle Not sure/ unable to say
Diet	Diet Very good	Diet Good	Diet Acceptable	Diet Poor	Diet Very poor	Diet Not sure/ unable to say
Mental Health	Mental Health Very good	Mental Health Good	Mental Health Acceptable	Mental Health Poor	Mental Health Very poor	Mental Health Not sure/ unable to say
School	School Very good	School Good	School Acceptable	School Poor	School Very poor	School Not sure/ unable to say
Pharmacist	Pharmacist Very good	Pharmacist Good	Pharmacist Acceptable	Pharmacist Poor	Pharmacist Very poor	Pharmacist Not sure/ unable to say
Employer	Employer Very good	Employer Good	Employer Acceptable	Employer Poor	Employer Very poor	Employer Not sure/ unable to say

Other (please specify)

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* 12. Which healthcare professional do you see most often?

GP with a special interest in either headache or children

Neurologist

Nurse

Pharmacist

Mental Health professional

Physiotherapist

Other (please specify)

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* 13. Do you have a healthcare professional who is your main person to contact for support and advice in between appointments? If so who is this person

Our family doesn't have a healthcare professional to contact for advice between appointments

Nurse

General Pediatrician

Pediatric Neurologist

Pharmacist

Mental health professional

Physiotherapist

Other (please specify)

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* 14. If your child sees multiple healthcare professionals, do you feel that they communicate your child's problems and treatments to each other effectively?

Yes

Not sure

Other

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* 15. How does your child manage their headache or migraine (please check all that apply)

Lifestyle - diet

Lifestyle - exercise

Lifestyle - sleep

Medication

Holistic therapy

Other (please specify)

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* 16. Is your child's school aware that your child has headache or migraine?

Yes

Don't know

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* 17. How many days in total has your child been absent from school in the last full academic year due to their headache and migraine?

1- 5 days

2 school weeks

3 school weeks

4 school weeks

5 school weeks

half a term

a full term

Full school year

Other (please specify)

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* 18. Does your child's school have a medical conditions policy

Yes

Don't know

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* 19. Does your child's school have an individual healthcare plan in place for your child?

Yes

Don't know

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* 20. Is your child's individual care plan reviewed at least annually

Yes

Don't know

They don't have an individual healthcare care plan

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* 21. How would you rate your child's school's support to make sure your child is able to be involved in school life like their peers?

Very good

Good

Acceptable

Poor

Very poor

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* 22. Is there anything else you would like us to know any managing migraine as a parent or carer of a child with headache or migraine?

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* 23. Would you be interested in attending a full day event in London on Friday 20th July 2018 to help develop a pathway of optimal care for children with young people living with headache or migraine?

Yes

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* 24. If you are willing for us to contact you to discuss the project and event in more detail please leave your contact details.

Name

Email Address

Phone Number

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* 25. We are a charity that funds research, provides evidence-based information, campaigns for and supports people affected by migraine in the UK. We'd like to keep you informed about this work, latest news, events and ways you can fundraise or support The Migraine Trust. We'll never sell or pass on your details and you can change your preferences at any time. For more details you can view our Privacy Policy at www.migrainetrust.org

If you would like to keep in touch with The Migraine Trust, please indicate below how we may contact you and provide the relevant contact details.

Name

Company

Address

Address 2

City/Town

State/Province

ZIP/Postal Code

Country

Email Address

Phone Number

Thank you for taking the time to answer these questions. Your answers will help us to better understand the support children and young people with migraine need. If you feel that your child with migraine would be interested in sharing their views in a similar survey. Please visit [link to web page]

For more information about The Migraine Trust or to contact us, please visit our website - www.migrainetrust.org

The Migraine Trust is a registered charity in England and Wales (no 1081300) and Scotland (SCO42911).