Research in CICU

A guide for families and carers

The Sydney Children's Hospital, Randwick conducts research in CICU.

Research in any speciality helps us find out what the best treatment and care is, and how to deliver that to our patients and their families.

We conduct research in a variety of ways in our unit. This includes collecting information from your child鈥檚 charts and notes, observing how procedures and activities are done,  or how a particular medication is given. The type of research done will depend on the scope of the study.

The Children鈥檚 Intensive Care Unit has dedicated medical and nursing staff to manage the research studies on each unit. 

Does everyone have to participate in research?

No, it is ok for you to decide not to join a study. 

Your child鈥檚 care will not be affected by your decision. Some children may not be able to participate in a study because of some treatments they are having

The research process

We collect data (such as blood results, heart rate, temperature, fluids in and out) every day from patient observation charts and medical records. 

The study protocol determines how long we do this; it may be a specific time frame or until a particular number of patients have been enrolled. At regular times during the study and at the end, we review and interpret the data from all the children in the study. 

We then generate a report when all the data has been analysed 鈥� this is available to all families who request it. 

Depending on the results of the study, we may make changes to how we treat and care for patients in the future. 

Enroling your child into a research study

If your child is eligible for a study, one of the research team will come and talk to you after your child is settled into CICU.

They will explain what the study is about and provide some written information. If you have any questions they will be able to answer them of find out more information for you. 

Consent

You can take time to decide if you would like your child to participate in the study. If you decide to enrol your child, someone will come to see you with a written consent form for you to sign.

Depending on the study, we may ask you to complete a survey about your child and there may be an opportunity for you to assist your child in specific studies, if you wish.

Nothing further will be required of you. Your child will not be required to do anything extra than receive the care we give.

Changing your mind

Even if you sign the consent form, it is still ok to change your mind later and withdraw your child from the study. Your child鈥檚 care will not be affected by your decision.

For some studies, if your child is eligible for a study and we feel that you are too distressed or if you are not at the bedside, we will commence the study and speak to you after about 鈥榗onsent to continue鈥�.

This means asking you if we can keep you child on the study. It is still ok for you to say no at this time.

How we use your child's information

All data is entered into a secure online database using unique codes given to each child 鈥� no personal information will be shared. All paper forms used will be stored in a locked secure cabinet within a locked office.

The data from the study is collected and put with the data of all other children in the study. The results can then help guide us in providing the best possible care.

Data (such as blood results, heart rate, temperature, fluid in and out) is collected every day from their observation charts and their medical records for a certain amount of time that is determined by the study protocol, this can be a specific time frame or until a particular number of patients have been enrolled.

At regular times during the study and at the end, the data from all of the children in the study is reviewed and interpreted. When the data has been analysed a report of the results is then generated and available to all families who request it. 

Depending on the results of the study, changes may be made in how we treat and care for patients in the future.

It is okay to change your mind later and withdraw your child from the study, even if you have signed the consent form. 

Your child鈥檚 care will not be affected by your decision.

The research team

CICU has dedicated medical and nursing staff to manage the research studies on each unit. 

Depending on the study, there may be other people involved in helping the team such as physiotherapists, occupational therapists, pharmacists, speech therapists, dieticians, social workers and child life therapists.

The CICU research team

Phone: 0499 616 448

Researchers:

  • Dr. Puneet Singh 鈥� Primary Investigator
  • Vicky Smith 鈥� Clinial Nurse Consutant
  • Claire Collins 鈥� Research Co-ordinator