Parent Sickle Cell Survey

1.Where did your child last receive care for their sickle cell condition?
Please just think about pre-booked visits, not emergency care.
2.How long ago was this?
3.Did the healthcare staff that you saw know enough about sickle cell disorder?
4.Did healthcare staff talk to you in a way that you could understand?
5.Did healthcare staff talk to your child in a way that they could understand?
6.Did healthcare staff answer your questions clearly?
7.Were healthcare staff sympathetic and understanding?
8.Could your child choose whether to have you (the parent/carer) with them at this appointment?
9.When did your child last receive urgent or emergency care for their sickle cell disorder?
10.When your child last had emergency care for their sickle cell disorder, what did you and your child first do for help?
Please select ONE only. If you went to more than one then please select the one you went to FIRST.
11.Why did you decide to do this first?
Please tick ALL that apply
12.Did the emergency healthcare staff that you saw know enough about sickle cell disorder?
13.Were the emergency healthcare staff sympathetic and understanding?
14.Did the emergency staff help ease your child’s pain?
15.Within the last year, has your child stayed on a hospital ward, either overnight or on a day unit (e.g. to receive treatment)?
This does NOT include outpatient/clinic appointments
16.Was the ward that your child stayed on suitable for their age?
17.In your opinion, were there enough doctors and nurses on duty to care for your child on the hospital ward?
18.Do you have enough information about your child’s sickle cell condition?
19.Which of the following do you use to find out information about sickle cell disorder?
Please tick ALL that apply
20.Do healthcare staff give enough information to others (such as school, college or place of work) about your child’s condition and how it affects them?
21.Do you have enough information about different treatment options (such as bone marrow transplant and blood transfusions)?
22.Are you involved enough in decisions about your child’s condition and different treatment options?
23.Do you have enough information about when and how to use your child’s medication(s)?
24.Do you (and your child) have enough information about coping with pain?
25.Do your child’s friends know enough about sickle cell disorder and understand the condition?
26.Do you have information about support groups for your child’s condition (e.g. Sickle Cell Society or local support groups)?
27.Do you have the chance to meet other parents of children with Sickle Cell Disorder, for support?
28.Have you and your child been offered the chance to see a counsellor or psychological services for support with their condition?
29.Do you ever have to repeat your child’s story to different members of healthcare staff?
30.Overall, how well do you think your child’s sickle cell disorder is looked after by healthcare staff?
31.Does sickle cell disorder cause your child difficulty with any of the following?
Please tick ALL that apply
32.How old is your child (in years)?
33.Is your child male or female?
34.Who was the main person who completed this questionnaire?
35.Please provide us with the FIRST part (i.e. OX3, OX17) of your postcode:
(This is to help us see if there are differences in care around the country)
36.Please describe in three words how living with sickle cell disorder makes you
and your child feel.
37.Is there anything that is particularly good about the care your child receives
for their sickle cell disorder?
38.Is there anything about the care your child receives for their sickle cell
disorder that could be better?