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New information service for families with a child in hospital or receiving hospital services in Ireland

Children in Hospital (CIH) Ireland is a charitable organisation that is developing a new information services for families with a child receiving inpatient or outpatient hospital care in Ireland. 

We are seeking input from families whose child is receiving or has received care in hospitals or hospital clinics throughout Ireland including emergency department visits, clinic appointments, day surgery, short or long term hospital admissions and families with a child with a life limiting diagnosis or who have lost a child.

This survey is anonymous however you may provide contact information at the end of the survey if you would like to stay involved in this exciting project or to receive information about our upcoming workshops and information sessions.

1.I live in
2.How did you hear about this survey?
3.Reason for treatment - Please give brief details of the diagnosis or reason for your child's required hospital care or services. Please do not include information that can identify hospital staff or your child.
4.Please indicate the hospital where your child mainly receives or received care or services  - hospital admission, day-surgery, urgent care/emergency department visit, clinic/specialist appointment etc.
5.If your child receives services or shared care from additional or local hospitals/clinics please indicate below all other locations your child receives hospital/clinic services.
6.Please rate the following options to help us understand what you think would be the most useful/important information to create or include in this new website.
Information related to:
Very important
Somewhat important
Least important
Not relevant to my experience/no comment
Adequate information easily available elsewhere on this topic - please specify in comment box
Coming to the Emergency Department  - what to expect, what to bring, what not to bring etc.
Preparing for a planned hospital admission/day surgery - Hospital specific content such as - Location, parking, hospital accommodation, services available etc.
Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc
Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc.
Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc
Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc.
Shared care between hospitals - What to expect, communicating etc
Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc.
Financial supports and entitlements available
Accommodation and transport supports and services
Connecting with other families with the same/similar diagnosis or experiences.
Finding organisations providing information about my child's diagnosis and supports available
Supporting  siblings
Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc
Child and Adolescent Mental Health and supports 
Making a complaint and advocating for my child
Preparing to transition to adult healthcare services
Grief and bereavement, end of life, hospice care, supports available
Supports at home  - Respite, recreation and activities 
Caring for the carer - Wellbeing and mental health support and resources
7.Please provide details of the most useful sources of information you received while in hospital or preparing for hospital/clinic that helped you to:
 - Feel prepared and know what to do and expect during various stages of your child's medical journey.
 - Best support your child and family.
 - Understand the supports and resources available from the government and other support organisations.
Please be as specific as possible about the source or name of the resources.
8.Please provide details of the information that would have been helpful but that you had most difficulty finding, that you were not able to find or that you did not know to look for at the time.
9.Family Information Sessions/Workshops  - We are developing a series of information sessions for families with a child receiving hospital care in Ireland. Please indicate the information sessions you might be interested in attending.
10.Information session or workshop schedule preferences. If the time and topic suited, I would be most likely to attend:
11.Please use this section to provide any other information related to your experience of accessing the information you needed. Please include any suggestions about information we can provide that might support families while their child is receiving hospital care.
12.This will be an exciting, fast moving project with a launch date planned for mid-2023. We have a range of opportunities available to suit all levels of commitment and interest if you would like to stay involved. Please check the boxes below and provide your email in the comment box if you would like to receive information about upcoming opportunities.
Yes
No
I would like to receive information about opportunities to be involved in this project
I would like to receive information about upcoming family information sessions/workshops 
I would like to be contacted about other opportunities (not related to this project) to provide feedback and perspectives based on your families hospital experiences
I would like to receive the Children in Hospital Ireland quarterly newsletter
13.Transitions from youth to adult healthcare - We have a number of upcoming projects and events related to youth transitioning to adult healthcare services. If you or your child would like to learn more about these opportunities to share your perspective and experience please select yes and provide a contact email below.
Thank you for completing this survey. Your input is important to us and will help ensure families with a child receiving hospital care in Ireland can find the information they need, when and where they need it.
Please contact project officer Helen Jones at helen@childreninhospital.ie should you have any questions or comments in relation to this survey.
Current Progress,
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