You are invited to take part in a research study. To help you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.

What is the purpose of this study?

Acquired Brain Injuries (ABI) can have a significant impact on the individual and people in their lives. Family members and friends often take on the role of caregiver in various ways. Caregivers play a key role in the rehabilitation and daily life of people who have suffered from an acquired brain injury. Studies have shown that being a caregiver can be stressful, and in some cases, can be associated with anxiety and depression. The purpose of this study is to investigate what factors influence wellbeing and distress in people who provide care for someone with an acquired brain injury. Knowing more about these factors could improve interventions to support caregivers in the future.

Why have I been invited to take part?

You have been invited to take part in this study because you are a caregiver of someone with an acquired brain injury. Acquired brain injuries are injuries to the brain that occurred after birth. Here are some examples of common acquired brain injuries, although this list is not conclusive:

Traumatic Brain Injury (TBI) – An injury to the brain caused by a trauma to the head (head injury). There are many possible causes, including road traffic accidents, assaults, falls and accidents at home or at work.

Stroke – Disruption of blood supply to part of the brain, leading to brain injury. There are two types of stroke: Ischemic stroke (a blood clot in a blood vessel causes a blockage of blood flow) and Haemorrhagic stroke (a weakened blood vessel bursts, causing blood to leak into the brain).

Infectious brain disease – For example, Meningitis (a bacterial, viral or fungal infection that can cause inflammation of the protective membranes) or Encephalitis (an inflammation of the brain, caused by infections or autoimmune cause).

Brain tumour – An abnormal mass of tissue inside the skull. Tumours can be cancerous (malignant) or non-cancerous (benign). The effects of a brain tumour are dependent on the size and location of the tumour and how much it has spread.

Anoxic/Hypoxic Brain Injury – An injury to the brain caused by starvation of oxygen. Some possible causes include choking, cardiac or respiratory arrest, drug overdose, near drowning or poisoning. 

Brain Aneurysm – A brain or cerebral aneurysm is where the wall of an artery or blood vessel in the brain is weakened, causing it to swell into a blister-like shape. As aneurysms grow, they put pressure on the surrounding tissue, which can cause a variety of symptoms.

You can take part in this study if you are:

1) an unpaid caregiver over the age of 16 who can understand written English,

and;

2) caring for a person that:

  • Is over the age of 16
  • Has suffered from an acquired brain injury of any kind (e.g. traumatic brain injury, stroke, sub- arachnoid haemorrhage, anoxia, aneurysm, infectious or metabolic disease or mixed ABI) that occurred after the age of 16.
  • Has been discharged from hospital (in relation to the ABI) for more than 3 months

Does not have a diagnosis of a degenerative or progressive neurological condition or disease (e.g. any type of dementia, multiple sclerosis, Parkinson’s disease, motor neuron disease or recurrent brain tumours)

Do I have to take part?

No, it is up to you to decide whether or not to take part. You can withdraw your consent at any time and without giving a reason. However, once you have submitted your questionnaires we are no longer able to withdraw your data as we will not be able to identify any specific questionnaires at that point. Deciding not to take part or withdrawing from the study will not affect the healthcare that you or the person you care for receive, or your legal rights.

Will my taking part be kept confidential?

Yes. All the information we collect is anonymous. We do not ask for your name or any other information that could identify you from your answers.

What will happen if I take part?

If you decide to take part in this study you will first be asked to complete a consent form by ticking boxes indicating that you have understood this information and that you agree to take part. You are then invited to answer some questions about yourself and the person you care for, which are followed by eight questionnaires.

These questionnaires will involve questions about your experience of caring for someone with an acquired brain injury. They will also ask about your own wellbeing, health, stress and how you deal with things.

It should take no more than around 30-40 minutes to complete the whole study. If you are completing paper copies of the questionnaires, you are asked to either send back the set of questionnaires using the pre-paid envelope or hand it back to the health profession or charity that invited you to take part in the study. If you are taking part online, your answers will be submitted electronically after you have completed the last questionnaire.

What are the possible benefits of taking part?

There are no direct benefits of taking part in this study. However, it is our hope that the results from this study can inform and influence healthcare and support for caregivers in the future.

What are the possible disadvantages of taking part?

We do not believe there are any disadvantages or risks from taking part in this study. However, we understand that the questionnaires will take time out of your already busy day to complete. Further, some of the questionnaires will ask you about your mental health and you might find this distressing. Please remember that you can withdraw at any time whilst you complete the questionnaires. If you do feel upset during or following completion of the questionnaires there are organisations and telephone numbers provided below which you are advised to contact. You are also advised to get in contact with your GP should you experience any persistent distress from participating.

 NHS24 - CALL 111 (urgent health advice out of hours)

Samaritans - CALL 116 123 (24 hours free helpline providing emotional support

What will happen to the results of the study?

The research team will aim to publish the results of this study as a thesis and as an article in a peer-reviewed journal. All data will remain anonymised and you will not be identified from any published results of this study.

 f you would wish to find out about the results you can go to the link provided on the debrief sheet at the end of the study, or contact a member of the research team below. Alternatively, you could contact the service or organisation where you saw the study advertised.

Who has organised and reviewed the study?

This study has been organised and sponsored by the University of Edinburgh. All research within the NHS is looked at by an independent group of people called a Research Ethics Committee. A favourable ethical opinion was obtained from the Research Ethics Committee (HSC REC B) and NHS management approval has also been obtained.

Researcher contact details

If you have any further questions about the study or the information above please contact the research team consisting of Nils Rickardsson (email: [email protected]) and Dr David Gillanders (email:[email protected]).

How do I take part?

Please follow the link below to the study page

 https://edinburgh.onlinesurveys.ac.uk/abicarer