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"Reducing risk for Aboriginal and Torres Strait Islander babies: trial of a safe sleep enabler to reduce the risk of sudden unexpected deaths in infancy in high risk environments."

Thank you for considering taking part in this research project.

This information gives you more details about the research project you are considering joining. Taking part in the research study is completely voluntary. It is okay to say no.

Introduction

A pilot study working with a small number of Aboriginal and Torres Strait Islander families has already happened. A pilot study gives the research team the chance to test the ideas (concepts) and methods (design) of the study with a small sample of participants. Pilot studies normally take place before the research team can go ahead with a similar, but larger research project.

The information given by the pilot study has been used to refine and improve processes for the larger project. The research project is now at the next stage where more families will be invited to take part.

Frequently asked questions (FAQs)

How many people or families will be involved in this study?

Around three hundred (300) Aboriginal or Torres Strait Islander families will be invited to take part in this research study.

What does “sudden unexpected deaths in infancy” mean?

‘Sudden Unexpected Death in Infancy’ is a term used by researchers when a baby dies suddenly and without warning. This is also called SUDI for short.

What situations increase risks for babies when they sleep?

Sleeping babies need to breathe. Babies sleeping alone in their own space as well as babies sleeping next to their parents can be at risk of dying if the sleeping place or situation is not safe. Any sleeping place or situation that makes it hard for a baby to breathe increases a baby’s risk of dying suddenly and unexpectedly while they sleep.

Babies can be put at more risk of dying because of problems with the place they are put to sleep.

  • Places like a couch, a chair or bean bag are not safe places for a baby to sleep.
  • It is risky for an adult or older child to fall asleep in an unsafe sleeping place with a baby.
  • A baby could be put at risk of dying by using too many sheets and blankets or by having soft toys or pillows in the place the baby is sleeping.

Babies can be put at more risk of dying because of things that people do around them while they sleep.

  • Smoking around a baby at any time can increase the risk of sudden infant death.
  • If baby shares a bed with a smoker the risk for the baby gets higher again.
  • If a baby shares a bed with someone who has been drinking (alcohol) or taking drugs the sleeping place is not safe for the baby. Drinking and drugs can make it harder for a person to wake up.

Babies can be at more risk of dying while they sleep when they share a bed with adults or older children. The babies who are most at risk are the very young (under 3 months), babies born early(premature), and babies born with a low birth weight.

What is a “safe sleeping space”?

A “pēpi-pod” is the term used in this research project to describe a safe infant sleeping space. The ‘pēpi-pod’ comes from New Zealand. “Pēpi” is a Maori word meaning ‘baby’.

Pēpi-pods gave families affected by the 2011 earthquake in Christchurch earthquake a safe sleeping place for their babies while keeping them close to their parents. Since then, pēpi-pods have been used successfully by many families in New Zealand who had babies at higher risk of dying suddenly and without warning.

A pēpi-pod helps a parent and baby to be close and safe when everyone is sleeping. The pēpi-pod gives a baby its own safe space when sleeping.

Why are we doing this research study?

The ‘pēpi-pod’ has worked for many families in New Zealand. We don’t know if the same idea to keep babies close and safe would be accepted by Aboriginal and Torres Strait Islander families in Queensland.

Official reports on the causes of death for babies under 12 months of age in Queensland show that Aboriginal and Torres Strait Islander babies die suddenly and unexpectedly at a rate much higher than the non-Indigenous population.

Removing risk factors from the baby’s sleep environment reduces the risk of a baby dying suddenly and unexpectedly. This study aims to help parents and their baby to be close during sleep while increasing the safety of the baby’s sleep environment.

What are my family’s responsibilities after joining the study?

Your family’s most important responsibility is to make sure your baby is safe whenever he or she is placed to sleep in the pēpi-pod, during the night and during the day.

When your baby is sleeping in the pēpi-pod you must follow the “Rules of Protection” for safe sleeping given to you when you took delivery of your pēpi-pod for the first time.

On the back, face clear, Only baby in here, Every sleep, everywhere, Always breathing smoke-free air, Drugs and drinking nowhere near, Own space, best care.

You must make sure that everyone who places your baby down to sleep uses the “Rules of Protection” for safe sleeping in pēpi-pods.

An important part of the research study is to spread the word about safe sleeping spaces for babies to your family and friends so that the whole community can share the messages about safe sleeping. At first, it will take about 30-60minutes for you to join the study and learn how to use the pēpi-pod. Each month you will be asked some questions about your baby and how you have used the pēpi-pod. These questions will take about 5-10minutes to answer each time. Your answers will be used to determine how useful the pēpi-pod and safe sleeping education has been and to improve services for families with young babies.

How long will you be needed to take part in the study?

If you take part in the study and use the pēpi-pod for your baby we will ask your family to be involved for around six months depending on the length of time your baby stays in pēpi-pod.

Will my family or my baby be at risk of harm of discomfort?

It is important that the “Rules of Protection” that were given during your family’s safety briefing when you picked up the pēpi-pod are used whenever your baby is placed to sleep in the pēpi-pod. If the rules of protection are followed the risk of SUDI will be much less. However,a baby can still die suddenly and unexpectedly, even if all safe sleeping advice is followed.

Can my family stop taking part in the study?

Your family can choose to leave the study at any time without penalty or the need to explain. The decision to continue to take part is voluntary. The decision to leave the study will not have any effect on any future treatment or contact you have with the research team or with the local health service/s working with the research team.

Does my family have to give the pēpi-pod back if we choose to leave the study?

If you choose to leave the project without using the pēpi-pod, everything must be returned to the research team so that another family can be offered the pēpi-pod.

If you choose to leave the study after you have used the pēpi-pod, you have the option of keeping the pēpi-pod as long as all the parts of the pēpi-pod package are still safe to use.

What are the costs of taking part in this study?

Your family does not have to pay any money to the research team to receive a pēpi-pod sleep space and safe sleeping education.

Will my family receive payment for taking part in this study?

Your family will not receive any money or any other form of compensation for taking part in this study.

Will my family’s study information be kept private?

Information about you gathered by health care workers and midwives caring for you and your family will be used to decide your eligibility to take part in the study, and will be shared with the research team. This information will be kept private and stored in a secure location by the research team who are bound by strict codes of confidentiality. Research data gathered during the study may be published in a scientific journal in the future; however, all information that could identify your family and your baby would be removed. At the completion of the study, you will have access to a written summary of the project results through your participating health service, at your request. A summary of your own data may also be provided by the project team, upon request.

Who can answer my questions about the study?

This is a joint project between your health service, the University of the Sunshine Coast (USC) and Children’s Health Queensland Hospital and Health Service (CHQHHS). The University of the Sunshine Coast Human Research Ethics Committee (USC HREC A/14/558), Children's Health Services Human Research Ethics Committee (CHQ HREC/13/QRCH/103/AM01), Townsville Hospital & HS HREC (HREC/14/QTHS/161) and Royal Brisbane & Women’s Hospital HREC (HREC/14/QRBW/191) have approved this study.

If you would like to discuss any matters concerning policies, conduct of the study, your rights as a participant, or make a complaint, you can raise them with the Chief Investigator.

If you wish to make a confidential complaint, with someone not directly involved in the study, you may contact the Chairperson, Human Research Ethics Committee at the University:

c/- Research Ethics Officer,
Office of Research,
University of the Sunshine Coast,
Maroochydore DC QLD 4558

Tel: +61 7 5459 4574
Email: humanethics@usc.edu.au

OR the Co-ordinator of the Children’s Health Services Ethics Committee on phone +61 7 3069 7002. If this phone is unattended, please leave a message and your call will be answered as soon as possible.

More information

If you have further questions about this study please contact:

Chief Investigator
Professor Jeanine Young,
University of the Sunshine Coast

Tel: +61 7 5456 5898
Mobile: +61 7 0438 903 511
Email: jyoung4@usc.edu.au

Download the Family Information Sheet Pēpi-pod Program® (PDF 368KB) 

* For PDF documents you must have the free Adobe Acrobat Reader, which can be downloaded from the Adobe Download page.

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