What do I need to know first?

Hello & Welcome

Parents and Carers

This learning package has been developed for parents. But sometimes a baby is cared for by someone else.

If you are not the baby’s parent but it has been decided that you will be the baby’s main carer, then you will be learning about this assessment tool. The word ‘parent‘ is used throughout this learning package but it also means ‘carer‘.

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The Congenital Heart Assessment Tool has been created to help parents to assess their baby at home after the first stage of complex heart surgery and medical care. It is good for parents to assess their baby because it means they are looking and checking to make sure everything is fine. It also means looking and checking to see if there are any problems.

This learning package has been created to explain this assessment tool. Explaining this tool is an important part of preparing you to take your baby home.

Your baby’s cardiac (heart) healthcare professionals will give you other important information and explanations about taking your baby home.

Cardiac healthcare professionals need your help to identify any changes your baby is showing at home. You can help them to make the right decisions to keep your baby safe. And they will be able to help you to keep your baby safe.

This section will prepare you for learning about the Congenital Heart Assessment Tool.

It will answer the following questions:

What will I learn?
Will this information be easy to understand?
How shall I get ready?
How will I remember everything?
For how long will I need to use the Congenital Heart Assessment Tool?
Who developed the Congenital heart Assessment Tool?

What will I learn?

As you progress through this learning package you will learn about an assessment tool. This will help you care for your baby more confidently at home.You will be able to:

Find out why you need to use the Congenital Heart Assessment Tool.
Understand the Congenital Heart Assessment Tool and how to use it.
Find out what you will need as well as the Congenital Heart Assessment Tool.
Find out what help you will be be given to help you prepare to take your baby home.
Find out what happens if you need to make a telephone call to get help from a healthcare professional.
Find out how to you will keep a record about your baby’s health and well-being.
Understand more about your baby’s heart condition.

Will this information be easy to understand?

How is this learning package designed?

It has been decided that your baby will benefit from you being able to use the Congenital Heart Assessment Tool after leaving hospital. It is important to make sure the information you are given is clear and exactly what you need to know.

Like you, other parents who have babies with complex heart conditions want help to safely look after their babies at home. It is important for the information in this learning package to be understood and used by all parents.

To make sure all parents will be able to use this learning package it has been designed in a step-by-step manner, using plain language. It is important that jargon is not used. Jargon is special words used by professionals, such as healthcare or legal professionals.

It is hoped that this package will be produced in different languages. Therefore, using plain English language will make this easier to develop.

What is in each section?

Each section will answer some questions to make sure parents are given all the information they will need. Information will be provided by:

Clear written information to read.
Interactive ‘click on’ items.
‘Click on’ links to websites or webpages. This will allow you to look at more helpful information.
A summary of information.

There are 4 short videos for you to watch. These videos will give examples of a mother who is:

Given explanations about the Congenital Heart Assessment Tool.
Making a telephone call to a nurse at the Cardiac Centre.

Nurses have acted the parts of a mother and nurse.

Is there a lot for me to understand?

There are 8 sections.

Click on each of the 3 links below:

Section 1-6

You will need to complete sections 1 – 6.

This information will help you to use this assessment tool correctly and safely.

Do I understand my baby’s heart condition?
Why is there a need for a Congenital Heart Assessment Tool (CHAT)?
What is the CHAT?
How do I us the CHAT?
What else do I need to help me assess my baby?
What will happen if I need to make a telephone call?

Section 7

You can choose to look at section 7.

7. How do cardiac professionals know about the CHAT?

Some parents like to know more. For this reason, some extra information has been included.

This section explains how the Cardiac Heart Assessment Tool has been shared with healthcare professionals around the United Kingdom and worldwide. It gives a brief explanation about the professional conferences and poster presentations that have taken place during its development. There are also links to professional journal papers which give more detail.

Section 8

You can choose to look at section 8.

8. How can I give an opinion about this learning package?

What parents think about this learning package is very important to us.

We would value your opinion on this learning package because we want to make sure it is what parents need to help them understand and use the CHAT.

How shall I get ready?

Before you start

Find a place where you feel comfortable and can learn this new information with minimal disturbances. This could be by your baby’s cot when your baby is asleep. Or maybe there is a quiet place on the ward.
You may wish to prepare a favourite drink. Maybe something to eat.
You might wish to write some notes in a notebook or on paper.
Please make sure you have your device speakers on. There are short videos to listen to.
If you are listening to this information in a public place you may like to use earphones.

You do not have to complete this learning package in one attempt:

You will be able to stop and start whenever you like.
You can come back again at other convenient times.
You will need to remember which section you were looking at so you can return to it at another time.

When you do this there are a few things to know:

When you come back to the learning package, it won’t remember which page you were last looking at.
On the front page click on the section you want.
Then scroll (move down) through that section to the place where you stopped.
Now you can restart where you left off.

How will I remember everything?

We know you might be worried about trying to remember everything, so you will be helped in other ways:

Before you go home there will be opportunities for you to talk to your baby’s cardiac healthcare professionals about this assessment tool.
The cardiac healthcare professionals will listen to you. They will respect what you say and what you ask. They understand the type of help you will need.
Being able to ask questions is very important. You will be encouraged to ask questions.
You may feel you need to ask questions more than once. This is normal and an important part of understanding new information.
You may wish to practice using the assessment tool with support from your baby’s cardiac health professionals.

For how long will I need to use the Congenital Heart Assessment Tool?

The care you give to your baby after the first stage of complex heart surgery and medical care is very important. Healthcare professionals will help you to do this. This is because it is a time when your baby is very fragile (delicate). There will be:

Continued recovery from the surgery.
Changes to your baby’s body after the improvements made by the first stage of surgery.
Natural changes to your baby’s growth and development in the first months after birth. This is the same for all babies.

The first surgery after birth will greatly help your baby, but it is only one stage of treatment that your baby will need. There will be a need to improve on the care given after birth. Your baby may need a second stage of surgery, depending on their heart problem – your cardiac healthcare professionals will tell you what your baby needs.

The second stage of surgery aims to improve your baby’s heart condition and make your baby stronger. After the second stage of surgery you will no longer need to use this assessment tool.

All babies are different. Your baby’s cardiac healthcare professionals will tell you what you will need to do for your baby after leaving the hospital. You will be given information about who to contact.

Should your baby’s cardiac healthcare professionals decide it would be good to use this assessment tool for a bit longer, they will tell you.

You will always be helped to keep your baby safe.

Who developed the Congenital Heart Assessment Tool?

The idea for the Congenital Heart Assessment Tool started in 2011. At first, this involved the Cardiac Centre at Birmingham Children’s Hospital NHS Foundation Trust (now Birmingham Women’s and Children’s NHS Foundation Trust) with support from the University of Coventry. Many health professionals from other cardiac centres, heart charities and professional bodies have also been involved. In 2013 the University of Worcester became involved.

Parent involvement from the start

Parents have told professionals what they need to help them to care for their babies at home. Parents have been using the tool and they have been helping professionals to understand how it should be improved. Parents play an important part and continue to be involved.

The following organisations and professionals have been involved in the development

Who developed this learning package?

This learning package for parents

has been funded by the

University of Worcester

2023.

Developers and contributors:

Development of this learning resource was kindly funded by the College of Health and Science Learning, Teaching and Learning Project Fund 2022-23, University of Worcester.

Developers:

Amanda Daniels, CHAT Learning Resource Content Developer, Associate Lecturer in Advancing Clinical Practice. University of Worcester.

Dr Kerry Gaskin, CHAT2 Project Lead, Associate Professor of Nursing. University of Worcester.

Gerry Beattie, Learning Technologist. University of Worcester.

Reviewers:

Suzie Hutchinson, Chief Executive, Little Hearts Matter.

Dr Jo Wray, Professor of Health Psychology, Senior Research Fellow. Great Ormond Street Hospital NHS Foundation Trust.

Anita Patel, Ward Manager. Birmingham Women’s and Children’s NHS Foundation Trust.

Kate Butler, Cardiac Nurse Specialist. Birmingham Women’s and Children’s NHS Foundation Trust.

“Thank you to the parents that have reviewed this learning package”.

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