Parent Sickle Cell Survey Question Title * 1. Where did your child last receive care for their sickle cell condition?Please just think about pre-booked visits, not emergency care. Overnight stay in hospital (inpatient) Day unit in hospital – e.g. for pain relief or blood transfusions Hospital outpatient or clinic appointment GP/ family doctor Other (please specify) Question Title * 2. How long ago was this? Within the last 6 months - Go to Question 3 More than 6 months ago - Go to Question 9 Can’t remember - Go to Question 9 Question Title * 3. Did the healthcare staff that you saw know enough about sickle cell disorder? Yes, definitely Yes, to some extent No Question Title * 4. Did healthcare staff talk to you in a way that you could understand? Yes, definitely Yes, to some extent No Question Title * 5. Did healthcare staff talk to your child in a way that they could understand? Yes, definitely Yes, to some extent No This was not necessary/ they weretoo young Question Title * 6. Did healthcare staff answer your questions clearly? I did not have any questions I did not have the chance to ask Yes, definitely Yes, sort of No Question Title * 7. Were healthcare staff sympathetic and understanding? Yes, definitely Yes, to some extent No Question Title * 8. Could your child choose whether to have you (the parent/carer) with them at this appointment? Yes No This was not needed/ my child is too young Question Title * 9. When did your child last receive urgent or emergency care for their sickle cell disorder? My child has never had urgent/emergency care - Go to Question 15 Within the last 6 months - Go to Question 10 More than 6 months ago - Go to Question 15 Can’t remember - Go to Question 15 Question Title * 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. Called a specialist sickle cell nurse - Go to Question 11 Treated at home without contacting anyone - Go to Question 15 Went to a GP - Go to Question 11 Went to A&E - Go to Question 11 Called 999 for an ambulance - Go to Question 11 Other - Go to Question 11 Question Title * 11. Why did you decide to do this first?Please tick ALL that apply I thought it would be quicker It was late in the evening/night and the only place that was open It was an emergency I thought there would be better care I did not know what else to do Other (please specify) Question Title * 12. Did the emergency healthcare staff that you saw know enough about sickle cell disorder? Yes, definitely Yes, to some extent No Question Title * 13. Were the emergency healthcare staff sympathetic and understanding? Yes, definitely Yes, to some extent No Question Title * 14. Did the emergency staff help ease your child’s pain? Yes, quickly enough Yes, but it could have been quicker No, they did not help ease the pain My child was not in any pain Question Title * 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 Yes, within the last year - Go to Question 16 No, not within the last year - Go to Question 18 Question Title * 16. Was the ward that your child stayed on suitable for their age? Yes, definitely Yes, to some extent No Question Title * 17. In your opinion, were there enough doctors and nurses on duty to care for your child on the hospital ward? All or most of the time Some of the time Rarely or never Question Title * 18. Do you have enough information about your child’s sickle cell condition? Yes, definitely Yes, to some extent No Question Title * 19. Which of the following do you use to find out information about sickle cell disorder?Please tick ALL that apply NHS or sickle cell centre website Sickle Cell Society Leaflets and other written information Ask NHS staff Google searches YouTube videos Ask friends and family None of the above Other (please specify) Question Title * 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? Yes, enough information Some but not enough information None, but I would like this This is not needed My child does not work/study Don’t know/not sure Question Title * 21. Do you have enough information about different treatment options (such as bone marrow transplant and blood transfusions)? Yes, definitely Yes, to some extent No, but I would like this This is not needed Question Title * 22. Are you involved enough in decisions about your child’s condition and different treatment options? Yes, definitely Yes, to some extent No, but I would like this I do not want or need to be Question Title * 23. Do you have enough information about when and how to use your child’s medication(s)? Yes, definitely Yes, to some extent No My child does not use medication Question Title * 24. Do you (and your child) have enough information about coping with pain? Yes, enough information Some but not enough information Very little or no information Question Title * 25. Do your child’s friends know enough about sickle cell disorder and understand the condition? Yes, they know enough They know some, but not enough They know little or nothing It is not needed / My child is too young Don’t know Question Title * 26. Do you have information about support groups for your child’s condition (e.g. Sickle Cell Society or local support groups)? Yes, enough information Some but not enough information None, but I would like this I do not want or need this Question Title * 27. Do you have the chance to meet other parents of children with Sickle Cell Disorder, for support? Yes, and I find this helpful Yes, but I do not find this helpful No, but I would like this I do not want or need this Question Title * 28. Have you and your child been offered the chance to see a counsellor or psychological services for support with their condition? Yes No, but we would like this No, but we do not need this Question Title * 29. Do you ever have to repeat your child’s story to different members of healthcare staff? Yes, and this bothers me Yes, but I do not mind No Question Title * 30. Overall, how well do you think your child’s sickle cell disorder is looked after by healthcare staff? Very well Quite well Not very well Question Title * 31. Does sickle cell disorder cause your child difficulty with any of the following?Please tick ALL that apply Everyday activities that people their age can usually do At work, in school, or training Access to buildings, streets or vehicles People’s attitudes to you and/or your child because of their condition Communicating, mixing with others, or socialising Any other activity No difficulty with any of these Question Title * 32. How old is your child (in years)? Question Title * 33. Is your child male or female? Male Female Non-Binary Transgender Male Transgender Female Other (please specify) Question Title * 34. Who was the main person who completed this questionnaire? The young person/patient The parent/carer of the young person/patient Both parent/carer and young person together Other Question Title * 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) Question Title * 36. Please describe in three words how living with sickle cell disorder makes youand your child feel. Question Title * 37. Is there anything that is particularly good about the care your child receivesfor their sickle cell disorder? Question Title * 38. Is there anything about the care your child receives for their sickle celldisorder that could be better? Done
