Research - Treatment for fatigue and sleep difficulties following stroke

Hi Lucy, I would be happy to pass this information on to our stroke support group. I'm wondering what the participants can expect in the hour with the neuro psychologist ? And then what to expect with an hour with a researcher ? 

I live in Bathurst NSW .

I participated in a Memory Skills Study through Mona's last year. It was pretty full on in the puzzles and memory area. I was okay with it because it's been many years since my stroke. 

I know it's not been long for others in the group and there is so much they are managing already so if I was to let them know about this I'd want to make sure there is support for how they are finding being a part of the study and that they know what exactly the study is aiming to find and how that will transfer into treatment.

I know that's a lot of questions but I recall what if was like just to be asked to do stuff without acknowledging I had no words to ask questions with. Very disempowering as a young  silent but inquisitive woman. 

I look after our team of Determinators (that's the name of our Stroke Support Group)

Thank you Sue

Hi Lucy, I would be happy to pass this information on to our stroke support group. I'm wondering what the participants can expect in the hour with the neuro psychologist ? And then what to expect with an hour with a researcher ? 

I live in Bathurst NSW .

I participated in a Memory Skills Study through Mona's last year. It was pretty full on in the puzzles and memory area. I was okay with it because it's been many years since my stroke. 

I know it's not been long for others in the group and there is so much they are managing already so if I was to let them know about this I'd want to make sure there is support for how they are finding being a part of the study and that they know what exactly the study is aiming to find and how that will transfer into treatment.

I know that's a lot of questions but I recall what if was like just to be asked to do stuff without acknowledging I had no words to ask questions with. Very disempowering as a young  silent but inquisitive woman. 

I look after our team of Determinators (that's the name of our Stroke Support Group)

Thank you Sue

Hi Sue,

Thanks so much for your reply and for being willing to pass this information on to the Determinators! I think it is very important to ask questions and I am glad that you did, I will give you as much information as I can about what to expect in this study.

In the hour sessions with a neuropsychologist, what you do depends which group you are allocated to. In general, each session focuses on education and strategy building for a particular aspect related to sleep and fatigue. In the cognitive behaviour therapy group, the focus is specifically on sleep and fatigue, and in the health education therapy group, it is more focused around aspects of health that impact sleep and fatigue and how to improve those e.g. exercise, diet, stress etc. Both interventions follow manuals that have been specifically created for this study, so there is a set structure to follow which is guided by the neuropsychologist. 

In the research appointments, the first session is a 2 hour session which involves an interview about sleep and fatigue issues, as well as answering questionnaires about symptoms and doing a memory task. The other 3 sessions only take about 20-30 minutes, and involve just answering the same questionnaires about your symptoms and what you liked/didn't like about the therapy.

There are also 4 x 2 week periods (at the same time as the research appointments) where we ask participants to fill out some online surveys about their symptoms and wear a device that measures sleep patterns, and a pedometer to measure how many steps you take each day.

I know it might sound like a lot to manage in one study, however so far we have found that participants have been able to engage with the demands very well. Of course the study is completely voluntary, and if people are finding it too overwhelming they are in not way obligated to continue, however we hope this does not become the case!

In general, the aim of the study is to see which treatment is more effective for improving sleep and fatigue symptoms following stroke, with the ultimate goal of translating it into real life clinical practice, to provide to people who experience these ongoing and persistent difficulties. We aim to provide as much support as we can in this study and are always available to answer any questions or concerns that participants may have. 

The brochures for this study are available on the link I provided in the my initial forum post - you are more than welcome to share that with the Determinators as well as the information I have given you today.

Looking forward to hearing from you.

Lucy

To anyone considering participating in this study I highly recommend it. I took part a couple of years ago and found the session with the neuropsych so beneficial

Toni

To anyone considering participating in this study I highly recommend it. I took part a couple of years ago and found the session with the neuropsych so beneficial

Toni