SBHI

National Survey

WHO SHOULD COMPLETE THIS SURVEY?

This survey is for anyone in Ireland who lives with spina bifida and/or hydrocephalus, or for anyone who has a child/ dependant who lives with spina bifida and/or hydrocephalus

Data Protection

The reason we are collecting your data is to allow us to perform statistical analysis upon it which will provide us with information needed to better understand how spina bifida and hydrocephalus affects people in Ireland today enabling us to ensure that we provide an appropriate service. For this reason your data will anonymised and shared with the University of Limerick for statistical analysis.

By signing this form you are agreeing to SBHI retaining the information shared in this survey on our secure database system for a period of 5 years. You have the right to contact us at any point to request removal of your personal data from our database.

If you feel that your data protection rights have been compromised at any point you have the right to lodge a complaint with the data protection commissioner.

Declaration

I agree that the information shared in this survey can be retained on the SBHI database.

I understand that my contact details may be used by SBHI to communicate relevant information tome.

I also understand that SBHI will never share my name or contact details with any third parties and that any information shared from this survey will only be done so anonymously.

  • Print name

  • Date

SBHI National Survey

Thank you for taking the time to complete this survey about spina bifida and hydrocephalus in Ireland today.

This is a very detailed survey and may take some time to complete, we really appreciate your contributions and the time you are giving to help us increase our level of understanding.

The results of this survey will be published without any reference to names and will help SBHI to plan according to the true needs of our service users and members.

All completed forms will be entered into a prize draw. There are three cash prizes to be won: €250, €150, and €100.

Please note: you can only complete this form if:

  • You are resident in the Republic of Ireland
  • You have spina bifida and/or hydrocephalus, or
  • Your child has spina bifida and/or hydrocephalus, or
  • Your dependant has spina bifida and/or hydrocephalus

The closing date for either the paper or online form is 2nd March 2018. The prize draw will take place on 5th March 2018.

As a service user or company member of Spina Bifida Hydrocephalus Ireland (SBHI), you are not required to complete this survey, this is a voluntary process. Please only complete the survey if you are comfortable to do so. Thank you.

The survey is divided into the following sections:

General questions

1-37

Adult only questions

38-61

Spina bifida specific questions

62-69

Hydrocephalus specific questions

70-106

General well-being questions

107-122

SBHI Services questions

123-135

GENERAL QUESTIONS (to be completed by all survey participants)

1. Are you completing this form with information about yourself or your child / dependant?



2. Name of the person filling out this form

3. Address of the person filling out this form

Eircode:

4. Email Address of the person filling out this form

5. Confirm Email Address of the person filling out this form

6. If you are completing this for someone else, what is your child’s / dependant’s name?

7. What is your / your child’s / dependant’s date of birth?

8. Are you / is your child / dependant


9. Do you / your child / dependant have any of the following – Please tick all that apply:





10. Have you / your child / dependant been diagnosed with any of the following (Please tick all that apply)?



11. Have you / your child / dependant been diagnosed with any of the following (Please tick all that apply)?



12. Are you aware that children who have spina bifida also have an increased risk of developing scoliosis and require this to be monitored?



13. Do you / does your child / dependant have scoliosis?



14. If yes, please tell us more about the diagnosis (or please state if they do not yet have a medical diagnosis)

15. If you / your child / dependant has scoliosis, are they on a waiting list for assessment or treatment?



16. Do you / does your child / dependant have a diagnosis of epilepsy?





17. If yes, how often do you / does your child/ dependant have seizures?





18. If yes, which regular or emergent (drugs in trial) medication to control seizure activity do you / does your child / dependant take?

19. How does epilepsy affect your / your child’s / dependant’s everyday life?

20. Do you / your child / dependant use a wheelchair:




21. To aid mobility, do you / does your child /dependant use (Please tick all that apply):





22. Do you / does your child / dependant experience pain?




23. If yes, where? (Please tick all that apply):



24. Did you go to / does your child / dependant go to… (Please tick all that apply):








25. What, if any, qualifications do you / does your child / dependant have? (Please tick all that apply):






26. If you faced any challenges in education, please tell us about these experiences and what, if any, supports you received

27. What are your main concerns about your own / your child’s / dependant’s physical health?

28. What are your main concerns about your own / your child’s / dependant’s mental health?

29. How many different specialists (consultants, nurses, etc.) do you currently see for your / your child’s / dependant’s conditions?

30. Please tell us the specialist’s role, how often you see them, and where they are located.

Role

How often visited

Location

31. Do you / your child / dependent have any other health conditions? (Please specify)

32. Would you like to tell us anything about your / your child’s / dependant’s health, or make any other comments?

33. Do you / your child / dependant fall asleep unexpectedly or at inappropriate times?


34. What time do you / your child / dependant usually go to sleep at?

35. What time you / your child / dependant usually get up at?

36. Do you think you / your child / dependant are –




37. Do you / your child / dependant exercise –






This section is for ADULTS with spina bifida and/or hydrocephalus only. If you are not an adult, or if your child / dependant is not an adult, please move on to question 62 page 12.

38. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus, do you / they live with –




39. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus, are you / they on a housing waiting list?


40. If yes, how long have you / your adult child / dependant been on the housing waiting list?

41. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus, do you / they talk to family or friends –





42. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus, do you see friends –





43. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus, do you leave your home –





44. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they feel tired –




45. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they get washed and dressed –



46. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they need someone to assist with getting up in the morning?


47. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they need someone to assist with getting dressed?


48. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they need someone to assist with going to bed?


49. Do you / does your adult child / dependant work?



50. If yes, what do you / does your adult child / dependant work or volunteer as?

51. If yes, are you / they –





52. If no, have you / they ever worked?


53. If yes, where did you / did they work?

53. If yes, where did you / did they work?

54. Do you / does your adult child / dependant have a full driving licence?


55. If yes, do you / they drive –



56. If yes, do you / they drive –


57. If no, do you / your adult child / dependant have a vehicle under a benefit funded scheme?


58. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they drink alcohol? –





59. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they smoke cigarettes?


60. If yes, how many cigarettes per week?

61. If you / your child / dependant is an adult with spina bifida and/or hydrocephalus do you / they vape? –



SPINA BIFIDA SPECIFIC QUESTIONS, please only complete this section if you / your child / dependant has spina bifida…

62. Is your / your child’s / dependant’s lesion / repair site:





63. Have you / your child / dependant ever had cellulitis?



64. Have you / your child / dependant had skin breakdown?



65. How many operations have you / your child / dependant had on your:

  • Shunt

  • Bladder

  • Back

  • Bowel

  • Legs

  • Kidneys

  • Feet

66. Do you / your child / dependant have a latex allergy?



67. Have you / your child / dependant undergone a procedure relating to continence function?



68. If yes, please explain the procedure/s you / they have experienced…:

69. If no, do you think you / they will need a procedure at some point in the future?



HYDROCEPHALUS SPECIFIC QUESTIONS… please only complete this section if you / your child / dependant has hydrocephalus…

70. Were you / your child / dependant born with hydrocephalus?


71. If you / your child / dependant were not born with hydrocephalus, how old were you / they when you were first diagnosed with the condition?

72. If you / your child / dependant were not born with hydrocephalus, how long was there between you first telling your doctor you thought there was a problem, and getting the diagnosis of hydrocephalus?

73. Would you like to tell us about any problems you / your child / dependant had getting diagnosed with hydrocephalus?


74. If yes, please tell us more…:

75. Do you know what caused you / your child’s / dependant’s hydrocephalus?







76. Do you / your child / dependant have a shunt?


77. If yes, is it a…:




78. Is it programmable?



79. How old were you / your child / dependant when the first shunt was fitted?

80. How many shunts have you / your child / dependant had?

81. How long have you / your child / dependant had the shunt currently fitted?

82. Do you / your child / dependant see anyone regularly about your / their hydrocephalus?


83. If yes, who do you / your child / dependant see?





84. If yes, how often do you / your child / dependant see this person?

85. Are you / your child / dependant under your neurological service?


86. When was the last time you / your child / dependant were seen at your neurosurgical centre?

87. Would you / your child / dependant like to tell us of any problems you’ve had getting seen by a neurosurgical service, or getting referred back to them if you’ve / they’ve been discharged?

88. Have you / your child / dependant then attended your local ED (Emergency Department) with suspected shunt problems?


89. How happy were you / your child / dependant that they listened to your concerns?





90. Has anyone ever said your / your child’s / dependant’s shunt over-drains?


91. Has anyone said you / your child / dependant has slit ventricles?


92. Do you / your child / dependant have a Shunt Alert Card?


93. Do you / your child / dependant have a Medicalert type of bracelet (or pendant)?


94. Have you / your child / dependant ever had a ventriculostomy?




95. Has your / your child’s / dependant’s ventriculostomy been redone?



96. If yes, how many times?

97. Do you / your child / dependant have headaches?


98. If yes, how often on average would you / your child / dependant experience headaches?

99. If yes, are they mostly…:


100. Do you / your child / dependant see anyone medical for the headaches?


101. Have you / your child / dependant been told you have migraines?


102. If yes, were you / your child / dependant told by…:





103. Do you / your child / dependant have a visual impairment?



104. If yes, is it associated with your hydrocephalus?



105. Do you / your child / dependant have a hearing impairment?



106. If yes, is it associated with your hydrocephalus?



GENERAL WELL-BEING QUESTIONS… (to be completed by all survey participants)

107. A) Do you / your child / dependant have concerns about (tick as many as you need to)

B) Have you / your child / dependant noticed any changes in these recently or over the last few years?

A) Do you / your child / dependant have concerns about

Remembering facts

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Remembering to do things

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Planning and organising

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Concentrating

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Paying attention

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Getting started on something

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Getting something finished

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Doing more than one thing at once

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Getting to sleep

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Frequently feeling anxious or panicky

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Frequently feeling sad or low

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Blocking out unwanted noise

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Making friends

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Balance or dizziness

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




A) Do you / your child / dependant have concerns about

Controlling your bladder and bowel

B) Have you / your child / dependant noticed any changes in this recently or over the last few years?




108. If you have noticed changes, do you think they are linked to any of the following? (Please tick any that apply):








109. How much do you worry about

Health

  • Never

  • Sometimes

  • Often

  • All the time

Money

  • Never

  • Sometimes

  • Often

  • All the time

Getting older

  • Never

  • Sometimes

  • Often

  • All the time

Relationships

  • Never

  • Sometimes

  • Often

  • All the time

Housing

  • Never

  • Sometimes

  • Often

  • All the time

Big changes happening (e.g. moving house)

  • Never

  • Sometimes

  • Often

  • All the time

Stressful things happening

  • Never

  • Sometimes

  • Often

  • All the time

110. Do you / your child / dependant ever stay in bed all day because of low mood?






111. Do you / your child / dependant cry?






112. Do you / your child / dependant feel






113. If this applies, what makes you / them angry?

114. Do you / your child / dependant feel anxious?






115. Does anxiety stop you / your child / dependant from doing anything? If yes, what?

116. In general, how happy are you / your child / dependant?





117. How do you / your child / dependant feel about having spina bifida and/or hydrocephalus?

118. Have you / your child / dependant ever been diagnosed as having depression?



119. If yes, who gave this diagnosis?





120. If yes, what treatment were you / your child / dependant offered?

121. If yes, was this treatment successful?


122. Please explain how it was or wasn’t successful…:

YOUR EXPERIENCE OF SBHI SERVICES…(to be completed by all survey participants)

123. Have you / your child / dependant heard of the SBHI Peer Support Service?



124. If yes, have you / your child / dependant attended a Peer Support Session, or contacted the Peer Support Service for assistance?


125. If you / your child / dependant have experienced Peer Support, did you find the service to be…:



126. Please expand on your answer –

127. Are you / is your child / dependant able to access respite breaks?



128. If yes, how often did you / your child / dependant attend respite in the last 12 months?

129. If yes, who provided this respite –


130. If you / your child dependant attended Spina Bifida Hydrocephalus Ireland (SBHI) respite breaks (such as SHINE),please tell us what these breaks mean to you / your child / dependant:

131. Please select your / your child’s / dependant’s knowledge level of the following services:

Family Support Team

  • I / they have never heard of this service from SBHI

  • I / they have heard of this service, but I/they have never used it before

  • I / they have used this service before

Education Development Team

  • I / they have never heard of this service from SBHI

  • I / they have heard of this service, but I/they have never used it before

  • I / they have used this service before

Youth and Respite Team

  • I / they have never heard of this service from SBHI

  • I / they have heard of this service, but I/they have never used it before

  • I / they have used this service before

Resource Centre, Clonshaugh

  • I / they have never heard of this service from SBHI

  • I / they have heard of this service, but I/they have never used it before

  • I / they have used this service before

National Resource Centre, Clondalkin

  • I / they have never heard of this service from SBHI

  • I / they have heard of this service, but I/they have never used it before

  • I / they have used this service before

132. Did you / your child / dependant find the service to be…:

Family Support Team

  • No help at all

  • Unhelpfull

  • Helpful

  • Very helpful

Education Development Team

  • No help at all

  • Unhelpfu

  • Helpful

  • Very helpful

Youth and Respite Team

  • No help at all

  • Unhelpfu

  • Helpful

  • Very helpful

Resource Centre, Clonshaugh

  • No help at all

  • Unhelpfu

  • Helpful

  • Very helpful

National Resource Centre, Clondalkin

  • No help at all

  • Unhelpfu

  • Helpful

  • Very helpful

133. Please tell us about your / your child’s / dependant’s experience of SBHI services:

134. Have you ever fundraised for Spina Bifida Hydrocephalus Ireland (SBHI)?



135. Finally, is there anything else you / your child / dependant would like to tell us about living with spina bifida and/or hydrocephalus?

Notes

Please remember to refer to the question number you are expanding on