Parent Carer Questionnaire


CONFIDENTIAL

What is this study about?

This is part of a big study that hopes to learn how heath services work together to support children and young people with cerebral palsies and their families.

Information is being collected across th UK.

We are very keen to hear what is working well for you and your child or young person. We also would like to know what is not working so well, so that we can highlight this recommend how to improve services in the future.

Who should complete this form?
Please complete this form if your child or young person is:
  • 0-25 years old
  • Has a diagnosis of cerebral palsy (this may be called by a different name, for example: Hemiplegia, Diplegia, Quadriplegia, Tetraplegia etc.)
At the end of the questionnaire we ask some questions about your child/young person’s condition and how it affects them. This is because we want to learn about the whole range of services for disabled children and young people, from those who can join in with the things they wantto do to those who depend on other people for all of their care and support.

As well as choosing the answers that fit best for your child/young person, you can choose to add your own comments if you can or would like to. All of your responses will be kept private.

Please share this questionnaire with other parent carers of children and young people with cerebral palsies too, so that they can have the chance to have their say.

Click submit at the bottom once you have answered the questions.
   
We would like to know if the health services your child/young person receives work for them and you, or not.

Please think from your point of view about health services that your child/young person receives now or has received in the past, and tell us:
1. Up to three things that are going well?  
a.
b.
c.
   
2. Up to three things that could be improved?  
a.
b.
c.
   
We know that your child/young person’s health and wellbeing is affected by other services too, such as equipment, education, social care, voluntary organisations and independent services.

Please think about these other services that your child/young person receives or has received and tell us:
3. Up to three things that are going well?
a.
b.
c.
   
4. Up to three things that could be improved?
a.
b.
c.
   
5. We would like to know from which team your child/young person receives most of their healthcare. Please select one of the following options:
 
   
6. This question is about whether the professionals working with your child/young person listen to them and to you and take account of their views and your views in all decision-making about them and their health care.
a.
Please choose one of the following options:
 
b.
Please also choose one of the following options:
 
   
7. This question is about how your child/young person receives their healthcare. Choose one of the following options:
 
   
8a. When you have a health concern about your child/young person, which part of the health service is your first point of contact when the concern is:
i. Urgent?
ii. Not urgent?
   
8b. If you have used any of the following services, how confident are you that any urgent health needs (e.g. long or difficult seizures, serious breathing problems, injuries) will be fully addressed by the:
  Not at all confident Extremely confident
GP team
Paramedic 999 ambulance
Emergency Department (A&E)
Specialist Nurse
Paediatrician
Other (please specify)
Comments:
   
8c. If you have used any of these services, how confident are you that your child/young person’s usual health needs (e.g. pain, constipation etc.) will be fully addressed by the:
  Not at all confident Extremely confident
GP team
Emergency Department (A&E)
Specialist Nurse
Paediatrician
Other (please specify)
Comments:
   
9a. Has your child/young person moved from children’s to adult services?
 
   
9b. If YES, how well did this work for you?
  Not at all well  Extremely well
 
   
9c. Is the care you receive in adult services:
 
Comments:
   
To help us to make the best sense of your responses, we would like to know about the impact of your child/young person’s cerebral palsy.
10. Please choose only ONE option that best describes your child/young person’s movement abilities:
 





   
11. Please choose which of the following issues also affect your child/young person (choose all that apply):
 












   
12. Please indicate where your child/young person receive most of their education?
 
   
13a. Which COUNTRY does your child/young person live in?
 
   
13b. In which COUNTY do they live?
 
   
14. How old is your child/young person?     
   
15. Would you be willing to be contacted again about this work, to consider taking part in further surveys or focus groups?
 
(If you are willing to be contacted again about this work, such as to take part in further surveys or focus groups, please contact us at cp@ncepod.org.uk.)
   
A big thank you for taking the time to answer these questions. We will make sure that all answers are taken into account as we continue the project. All answers will feed in to the final report.