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What is Caring Forward?

Caring Forward in an online study developed by The Centre for Research in Family Health, located at the IWK Health Centre. The goal of the study is to learn more about the experiences of unpaid caregivers of acquired brain injury (ABI) survivors. In Canada, there is limited support for caregivers of ABI survivors. The long-term goal of our research is to create programs that support caregivers and improve well-being. 

What is an Acquired Brain Injury?

An acquired brain injury (ABI) is any damage to the brain that happens after birth, and that is not due to a genetic abnormality or hereditary disorder. Approximately 1.5 million people in Canada are living with a brain injury and over 160 000 people experience an ABI every year.

An Acquired Brain Injury may be due to: 

• A stroke

• A motor vehicle accident

• A concussion 

• A sport injury

• Domestic abuse

• Substance abuse

• An aneurysm

• Meningitis

• Vasculitis 

• Brain hemorrhage

• A fall

• Self-harm 

• Lack of oxygen

• A combat injury

• Assault

• Poisoning 

• A brain tumour

• Encephalitis

• Hydrocephalus 

• A surgical procedure

Who Can Participate?

We are seeking individuals who:

• Are an unpaid caregiver for someone with an acquired brain injury

  • • This person may be a child, a spouse, a parent, a sibling, a friend, or a relative

• Live in Canada

• Have access to a tablet, a smartphone, or a computer

• Are fluent in English 

• Are willing to fill out online questionnaires

If you meet these criteria, we'd like to hear from you! Click here to participate.

How Can I Participate in the Study?

Click here to sign-up for the Caring Forward study. You will answer a couple of questions, and then you will receive a brief phone call from a member of our research team. This call will be to clarify what the study is about, and to answer any questions you may have. 

What Will I Need to Participate?

You will need a tablet, a smartphone, or a computer with internet access. You will receive a link to the questionnaires via email. No additional software is needed!

Will my Loved One have to Answer Anything?

No, all questionnaires are directed to you, the caregiver.

Where does Caring Forward Take Place?

The core research team is located at the IWK Health Centre in Halifax, Nova Scotia, Canada. 

The study is done fully online. This means that you are able to take part from the comfort of your own home. 

What is the Time Commitment? 

You will receive a 30-minute questionnaire once every 6 months for up to two years. Once you receive a questionnaire, you will have 2 weeks to complete it. If you can't finish the questionnaire in one sitting, you can exit out and your progress will be saved so that you can return to it later. 

Will I be Able to Participate in Other Caregiver Programs?

If you agree to be contacted for future studies, you may be able to participate in other caregiver programs. If you are not selected to participate, you will receive access to the program material when the entire study is completed. 

What if I Decide to Stop my Participation?

You will receive a short email from us acknowledging that you have decided to stop your participation, and your data will be removed from the study. You can stop participating at any time.