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.

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* 1. I live in

Connaught

Leinster - Dublin city or county

Leinster - outside Dublin

Munster

Ulster - ROI

Ulster - NI

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* 2. How did you hear about this survey?

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* 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.

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* 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.

Cappagh National Orthopaedic Hospital, Dublin

Cavan General Hospital

CHI/Children’s Health Ireland Crumlin

CHI/Children’s Health Ireland Tallaght University Hospital

CHI/Children’s Health Ireland Temple Street

CHI/Children’s Health Ireland Connolly Urgent Care Centre and OPD

Cork University Hospital Cork

Letterkenny University Hospital

Mayo University Hospital

Mercy University Hospital Cork

Midland Regional Hospital - Mullingar

National Rehabilitation Hospital Dublin

Our Lady of Lourdes Hospital, Drogheda

Portiuncula University Hospital Galway

Sligo University Hospital Sligo

South Infirmary Victoria University Hospital Cork

South Tipperary General Hospital Tipperary

St Luke's General Hospital, Kilkenny

University Hospital Galway

University Hospital Kerry

University Hospital Limerick

University Hospital Waterford

Wexford General Hospital Wexford

Maternity Hospital Public/Private - Please specify below

Other/additional information

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* 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.

Cappagh National Orthopaedic Hospital, Dublin

Cavan General Hospital

CHI/Children’s Health Ireland Crumlin

CHI/Children’s Health Ireland Tallaght University Hospital

CHI/Children’s Health Ireland Temple Street

CHI/Children’s Health Ireland Connolly Urgent Care Centre and OPD

Cork University Hospital Cork

Letterkenny University Hospital

Mayo University Hospital

Mercy University Hospital Cork

Midland Regional Hospital - Mullingar

National Rehabilitation Hospital Dublin

Our Lady of Lourdes Hospital, Drogheda

Portiuncula University Hospital Galway

Sligo University Hospital Sligo

South Infirmary Victoria University Hospital Cork

South Tipperary General Hospital Tipperary

St Luke's General Hospital, Kilkenny

University Hospital Galway

University Hospital Kerry

University Hospital Limerick

University Hospital Waterford

Wexford General Hospital Wexford

Other/additional information

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* 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.	Coming to the Emergency Department - what to expect, what to bring, what not to bring etc. Very important	Coming to the Emergency Department - what to expect, what to bring, what not to bring etc. Somewhat important	Coming to the Emergency Department - what to expect, what to bring, what not to bring etc. Least important	Coming to the Emergency Department - what to expect, what to bring, what not to bring etc. Not relevant to my experience/no comment	Coming to the Emergency Department - what to expect, what to bring, what not to bring etc. Adequate information easily available elsewhere on this topic - please specify in comment box
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 - Hospital specific content such as - Location, parking, hospital accommodation, services available etc. Very important	Preparing for a planned hospital admission/day surgery - Hospital specific content such as - Location, parking, hospital accommodation, services available etc. Somewhat important	Preparing for a planned hospital admission/day surgery - Hospital specific content such as - Location, parking, hospital accommodation, services available etc. Least important	Preparing for a planned hospital admission/day surgery - Hospital specific content such as - Location, parking, hospital accommodation, services available etc. Not relevant to my experience/no comment	Preparing for a planned hospital admission/day surgery - Hospital specific content such as - Location, parking, hospital accommodation, services available etc. Adequate information easily available elsewhere on this topic - please specify in comment box
Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc	Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc Very important	Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc Somewhat important	Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc Least important	Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc Not relevant to my experience/no comment	Preparing for a planned hospital admission/day surgery - Parent guide, questions to ask, what to expect, supporting your child etc Adequate information easily available elsewhere on this topic - please specify in comment box
Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc.	Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc. Very important	Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc. Somewhat important	Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc. Least important	Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc. Not relevant to my experience/no comment	Unexpected admission - Emergency admission, ICU, PICU, NICU - tips for parents/carers, parent guide, preparing for transfer to the ward etc. Adequate information easily available elsewhere on this topic - please specify in comment box
Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc	Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc Very important	Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc Somewhat important	Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc Least important	Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc Not relevant to my experience/no comment	Food and nutrition for you and your child - What to expect, questions to ask, special dietary requirements, paying for meals etc Adequate information easily available elsewhere on this topic - please specify in comment box
Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc.	Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc. Very important	Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc. Somewhat important	Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc. Least important	Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc. Not relevant to my experience/no comment	Preparing for an appointment/clinic - What to expect, how to prepare, supporting my child/siblings, what to bring, questions to ask etc. Adequate information easily available elsewhere on this topic - please specify in comment box
Shared care between hospitals - What to expect, communicating etc	Shared care between hospitals - What to expect, communicating etc Very important	Shared care between hospitals - What to expect, communicating etc Somewhat important	Shared care between hospitals - What to expect, communicating etc Least important	Shared care between hospitals - What to expect, communicating etc Not relevant to my experience/no comment	Shared care between hospitals - What to expect, communicating etc Adequate information easily available elsewhere on this topic - please specify in comment box
Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc.	Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc. Very important	Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc. Somewhat important	Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc. Least important	Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc. Not relevant to my experience/no comment	Hospital and volunteer play/recreation activities while in the hospital/clinic appointments, activity ideas etc. Adequate information easily available elsewhere on this topic - please specify in comment box
Financial supports and entitlements available	Financial supports and entitlements available Very important	Financial supports and entitlements available Somewhat important	Financial supports and entitlements available Least important	Financial supports and entitlements available Not relevant to my experience/no comment	Financial supports and entitlements available Adequate information easily available elsewhere on this topic - please specify in comment box
Accommodation and transport supports and services	Accommodation and transport supports and services Very important	Accommodation and transport supports and services Somewhat important	Accommodation and transport supports and services Least important	Accommodation and transport supports and services Not relevant to my experience/no comment	Accommodation and transport supports and services Adequate information easily available elsewhere on this topic - please specify in comment box
Connecting with other families with the same/similar diagnosis or experiences.	Connecting with other families with the same/similar diagnosis or experiences. Very important	Connecting with other families with the same/similar diagnosis or experiences. Somewhat important	Connecting with other families with the same/similar diagnosis or experiences. Least important	Connecting with other families with the same/similar diagnosis or experiences. Not relevant to my experience/no comment	Connecting with other families with the same/similar diagnosis or experiences. Adequate information easily available elsewhere on this topic - please specify in comment box
Finding organisations providing information about my child's diagnosis and supports available	Finding organisations providing information about my child's diagnosis and supports available Very important	Finding organisations providing information about my child's diagnosis and supports available Somewhat important	Finding organisations providing information about my child's diagnosis and supports available Least important	Finding organisations providing information about my child's diagnosis and supports available Not relevant to my experience/no comment	Finding organisations providing information about my child's diagnosis and supports available Adequate information easily available elsewhere on this topic - please specify in comment box
Supporting siblings	Supporting siblings Very important	Supporting siblings Somewhat important	Supporting siblings Least important	Supporting siblings Not relevant to my experience/no comment	Supporting siblings Adequate information easily available elsewhere on this topic - please specify in comment box
Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc	Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc Very important	Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc Somewhat important	Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc Least important	Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc Not relevant to my experience/no comment	Supporting the patient - support groups, talking to my child about their diagnosis, difficult conversations etc Adequate information easily available elsewhere on this topic - please specify in comment box
Child and Adolescent Mental Health and supports	Child and Adolescent Mental Health and supports Very important	Child and Adolescent Mental Health and supports Somewhat important	Child and Adolescent Mental Health and supports Least important	Child and Adolescent Mental Health and supports Not relevant to my experience/no comment	Child and Adolescent Mental Health and supports Adequate information easily available elsewhere on this topic - please specify in comment box
Making a complaint and advocating for my child	Making a complaint and advocating for my child Very important	Making a complaint and advocating for my child Somewhat important	Making a complaint and advocating for my child Least important	Making a complaint and advocating for my child Not relevant to my experience/no comment	Making a complaint and advocating for my child Adequate information easily available elsewhere on this topic - please specify in comment box
Preparing to transition to adult healthcare services	Preparing to transition to adult healthcare services Very important	Preparing to transition to adult healthcare services Somewhat important	Preparing to transition to adult healthcare services Least important	Preparing to transition to adult healthcare services Not relevant to my experience/no comment	Preparing to transition to adult healthcare services Adequate information easily available elsewhere on this topic - please specify in comment box
Grief and bereavement, end of life, hospice care, supports available	Grief and bereavement, end of life, hospice care, supports available Very important	Grief and bereavement, end of life, hospice care, supports available Somewhat important	Grief and bereavement, end of life, hospice care, supports available Least important	Grief and bereavement, end of life, hospice care, supports available Not relevant to my experience/no comment	Grief and bereavement, end of life, hospice care, supports available Adequate information easily available elsewhere on this topic - please specify in comment box
Supports at home - Respite, recreation and activities	Supports at home - Respite, recreation and activities Very important	Supports at home - Respite, recreation and activities Somewhat important	Supports at home - Respite, recreation and activities Least important	Supports at home - Respite, recreation and activities Not relevant to my experience/no comment	Supports at home - Respite, recreation and activities Adequate information easily available elsewhere on this topic - please specify in comment box
Caring for the carer - Wellbeing and mental health support and resources	Caring for the carer - Wellbeing and mental health support and resources Very important	Caring for the carer - Wellbeing and mental health support and resources Somewhat important	Caring for the carer - Wellbeing and mental health support and resources Least important	Caring for the carer - Wellbeing and mental health support and resources Not relevant to my experience/no comment	Caring for the carer - Wellbeing and mental health support and resources Adequate information easily available elsewhere on this topic - please specify in comment box

Suggestions for other information:

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* 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.

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* 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.

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* 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.

Hospital readiness - Preparing for coming to the hospital, supporting your child etc

Financial supports - Understanding the supports available and how to apply for them

Parent to parent networking - Opportunity to connect with and hear from other families

General info clinic - Opportunity to ask any questions you have about going to the hospital, accessing financial and other supports etc

Sibling Supports - Information session for parents/carers on how to support the siblings of child receiving hospital treatment

Sibshop - Support workshop for the siblings of a child receiving hospital treatment.

Parent/carer mental health and wellness

Financial wellbeing - Managing your finances, budgeting, preparing for the future

Knowing your rights, advocating for your child and making a complaint.

Preparing for your child/youth to transition to adult healthcare services

Suggestions for other sessions to include:

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* 10. Information session or workshop schedule preferences. If the time and topic suited, I would be most likely to attend:

Virtual information session - Monday to Friday

Virtual information Session - Weekend

I would prefer an on-demand recorded information sessions I could attend at my own convenience.

I would prefer in- person information sessions/workshops.

I would be unlikely to attend information sessions.

Not sure, need more information

Please provided additional suggestions, questions or feedback on proposed information sessions.

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* 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.

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* 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 opportunities to be involved in this project Yes	I would like to receive information about opportunities to be involved in this project No
I would like to receive information about upcoming family information sessions/workshops	I would like to receive information about upcoming family information sessions/workshops Yes	I would like to receive information about upcoming family information sessions/workshops No
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 be contacted about other opportunities (not related to this project) to provide feedback and perspectives based on your families hospital experiences Yes	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 No
I would like to receive the Children in Hospital Ireland quarterly newsletter	I would like to receive the Children in Hospital Ireland quarterly newsletter Yes	I would like to receive the Children in Hospital Ireland quarterly newsletter No

Please email address required if you selected yes:

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* 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.

Yes I would like more information

Please provide email or phone number if you selected yes.

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.

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

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* 1. I live in

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* 2. How did you hear about this survey?

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* 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.

Question Title

* 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.

Question Title

* 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.

Question Title

* 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:

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* 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.

Question Title

* 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.

Question Title

* 10. Information session or workshop schedule preferences. If the time and topic suited, I would be most likely to attend:

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* 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.

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* 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: