Survey - Further information...

Why is the SBHI National Survey 2018 so important?

At the end of January 2018 we launched our National Survey, a piece of research which has been fully funded by the Hospital Saturday Fund (HSF).

The purpose of this survey is to gather as much information as possible about spina bifida and/or hydrocephalus in Ireland today. Once we have this data we can then form new campaigns, set new strategic aims, and demonstrate the needs of both members and service users, and the supports provided by SBHI. In a climate of uncertainty around funding for these unique services, information from those affected is essential.

The response from participants so far…

So far, we have had over 120 surveys completed and returned to us, either by post or through the online form. We are delighted with this response and we offer our sincere thanks to those who have taken the time to complete the survey.

Of course, we would love to hear from as many members and service users as possible and we are aware that some people have had queries around completing the survey. Therefore we have created this document to provide further clarity.  Please read the information below ahead of choosing whether or not to complete the survey – Thank you.

“It is very long. Why are there so many questions?”

We are aware that the form is very long, there are over 100 questions, and we appreciate that this requires a commitment of time and effort on your part.

The reason the survey is so long is because we do not have the resources to send out lots of different surveys over a number of months or years. We are working to have accurate data which shows what living with spina bifida and/or hydrocephalus in 2018 is like; we can only achieve this through a voluntary process of completing the survey.

The production and postage of the survey is expensive and we are very thankful that this was funded by the HSF. However, it means that we only have one key opportunity to gather this information and need to ask lots of questions about several key topics. We don’t want anyone to feel overwhelmed by the questions, so please just contact your Family Support Worker if you would like assistance in completing the form.

“Some of the questions are very personal, why are these questions here?”

This is a very valid question to ask.

We are conscious that there are questions of a personal nature in the survey, and that some of the questions may be difficult to answer for some. This is why we offer the support of the Family Support Workers in completing the form.

The reason for the questions being included is because SBHI needs to be able to explain our purpose to our various funders. It is not acceptable for this to be justified on feelings of how things are, we must back up our claims with anonymised statistics. Anonymised means taking away personal information including name and contact details.

“Why do I have to fill out my name and contact details?”

Another really good question, especially when so many surveys are anonymous.

There are a few reasons for this:

  1. We want to be able to confirm that those completing the survey are resident in Ireland. If this was an open process, the integrity of the data could be compromised.
  2. We want to be able to email all those who take part with the results of the survey once the data has been analysed. We appreciate that you are sharing with us, and we want to be able to do the same in response.
  3. All those completing the survey with contact details are entered into a prize draw. If you are the winner, we want to be able to let you know.

“What if I really don’t want to complete my name and contact details?”

If you still want to complete the form and do not want to submit your name and contact details, you are welcome the send in the paper version of the form and leave these fields blank.

We will process your responses, however when the information is analysed your surveys may be quantified in a specific way to account for there being no contact information.

“Is this process confidential?”

Yes, every part of the SBHI service is governed by strict confidentiality and the National Survey is no exception. There is no staff member who operates outside of this expectation. Protecting you and your information is always a primary part of our professional service.

All surveys are in the first instance registered by a senior member of staff and then stored in a secure location.

The information is then anonymised before being sent on to our partners in the University of Limerick (UL) for analysis. This partnership is governed by a Memorandum of Understanding which is an agreement between SBHI and UL, and includes securities around confidentiality.

“What if I’m uncomfortable about completing the survey?”

If you have any concerns at all about completing the survey, please do not complete it. As stated in the correspondence sent with the paper survey and in the online version, this is a voluntary process – you should only take part if you are comfortable to do so.

“What if I want to talk about some of the issues raised in the survey?”

If you complete the survey, or even if you read the questions and do not complete the survey, and you want to speak to someone within SBHI about any issues you have two main options:

  1. You can contact SBHI during our working hours which are Monday to Friday, 9am-1pm and 2pm-5pm. The number is 01 457 2329 and the email is and you will be passed on to the most suitable member of staff as soon as they are available.
  2. Outside of these hours we offer the SBHI Peer Support Service. The number to contact Peer Support is: 087 631 7470 or email:

"I submitted my form online but there was no confirmation, did it go through?"

We initially had some issues with the confirmation message not coming through. This has now been sorted and all those submitting the survey online will receive a confirmation message.

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