Brain Tumour Ireland’s parent survey – August 2022

Brain Tumour Ireland

Brain Tumour Ireland is conducting a Survey for Parents of children who have been
diagnosed with a brain tumour.
Access the Survey here.


Why Are We Doing This Survey?
Brain Tumour Ireland has long been aware of the gaps in services for children diagnosed with
a brain tumour. In particular, these services can be hard to access once the child has left the
hospital setting. We have heard many stories from parents feeling they have to fend for
themselves to access appropriate rehabilitation services, educational support, financial
support etc. that would benefit their child’s recovery and help reintegrate them back into
school and other peer group settings.


We would like to capture as much information as possible from you as parents/guardians
about the lived experience when accessing vital services for your child. We want to have a
better understanding of where the gaps in services and information are so that we can
advocate on your behalf for better and more timely services.


How We Developed The Survey.
The survey questions we ask will give us the type of information we need in order to get a
better understanding of the services available to children following a brain tumour diagnosis.
We have really benefited from the input of Prof. Irwin Gill, Consultant Paediatrician with
a special interest in Neurodisability, Temple Street Hospital, Dr. Sarah Curry, Consultant
Paediatric Oncologist, Crumlin Hospital, Prof. Frances Horgan, Assoc. Professor of
Physiotherapy, RCSI, Dr. Ailish Malone, Lecturer in Physiotherapy, RCSI and Dr. Paul Carroll,
National Rehabilitation Hospital (NRH).
We engaged the services of Amárach Research the leading market research company to
design, implement and host the survey.


The Logistics.
This survey is not short. The information that we are collecting is vital to understanding the
needs of parents and children. We have worked with Amárach Research to make it as easy
and as user friendly as possible.
The survey will take approx. 20-25 minutes to complete and you will be able to pause the
survey and come back to it later, as long as you do this on the same device (laptop, phone
etc.).


We would welcome both parents/guardians to take the survey as we know the experience
can be different for both. Once the data from the survey has been collected, you will have the
option to receive a summary of the results should you wish. We would emphasise of course that
Brain Tumour Ireland has no access to individual responses and we will only get a report of
aggregate findings from Amárach.
Finally, we would ask that you share this survey with other parents or families that you know
would like to contribute to this important project. The closing date for this survey is Friday
26th August.

You can access the survey by clicking this link.
Many thanks for taking the time to share your experience as a parent/guardian of a child
with a brain tumour diagnosis. All of your support enables us to extend our services.

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