Refresh study: Fatigue management for people with Parkinson's

Welcome

"Life is full of challenges, but with the right support and knowledge, we can navigate through them. This program is designed to empower individuals with Parkinson's to take control of their energy levels and live life to the fullest."

Sarah Alageel, PhD Candidate, University of East Anglia, and Lead Researcher of the ReFresh Study

ReFresh Study: Fatigue Management in People with Parkinson's

Fatigue is a common problem in Parkinson's disease, impacting daily life and overall well-being. Our research study will evaluate an online course in fatigue management for people with Parkinson's. The ReFresh Online Fatigue Management Program, has been designed specifically for people with Parkinson's. Our program is adapted from existing successful treatment programs for fatigue. It is to be delivered conveniently online. The program uses techniques such as cognitive behavioural therapy (CBT), energy conservation (EC), and exercise.

Who can take part in this research study?

We want to recruit 40 adults with Parkinson's disease who also struggle with fatigue.

One of the fatigue management recommendations is to undertake 30 minutes of exercise three times a week. If you have any concerns about taking on such an exercise program (particularly if you have another health condition that may increase risk, such as lung or heart disease) we recommend you talk to your GP or clinical team about what exercise is appropriate for you before you start this research project.

What do I do next?

Wondering how to proceed? If you're ready to participate, simply get a brief overview of the study. Once you're ready, fill in the survey.

Alternate formats

Need the information in a different format, e.g. hard copy or large print? Feel free to contact us, and we'll be happy to assist.

Next Steps

Once we have your survey, we will email you, telling you which one of two groups you have been put in by chance (also known as randomisation).

These groups are:

1.Online ReFresh fatigue management group.

These participants will be sent an email with a link to the online program and will take part in the six sessions, over 6 weeks (see below for more details). They will then complete an end point survey at 12 weeks.

If you are put in the ReFresh group, then over you'll embark on a journey of learning and self-discovery through our online sessions completed over 6 weeks. Each session, lasting approximately 25 minutes, is tailored to equip you with valuable tips and techniques for effective fatigue management. Additionally, we encourage you to dedicate three 30-minute sessions each week to exercise, a vital component of your well-being journey.

Your progress will be saved, allowing flexibility in your schedule. After each session, you'll engage in a brief homework assignment and a short survey, with each session building upon the last. By the end of session 6, you'll possess the tools needed to take control of your energy levels.

2.Wait list group (control group)

These participants will be sent an email telling them they are wait-listed. After they have completed the end point survey at 12 weeks, they will be sent a link at 16 weeks to the online program which they can take part in if they wish (this will not be tracked or assessed).

We will email you to tell you which group you are in.

Welcome Video

Watch the overview video below to gain a comprehensive understanding of the program. Your journey toward effective fatigue management and enhanced well-being starts here.

Start your survey!

Additional Resources and Support

We understand that managing fatigue in Parkinson's can be a complex journey, and additional support may be beneficial. Here are some trusted resources you can explore for further assistance:

Parkinson's UK Helpline:
- Parkinson's UK is a leading charity offering support and conducting research for Parkinson's disease.
- Helpline: Call their free, confidential helpline at 0808 800 0303 (available Monday to Friday, 9 am to 6 pm, and Saturdays from 10 am to 2 pm).
- Email: Reach out via email at hello@parkinsons.org.uk.
MIND - For Better Mental Health:
- MIND is a mental health charity providing valuable information, support, and services.
- Visit their MIND Information and Support Page for a range of guides and resources.

Acknowledgements

Heartfelt Thanks to Our Lay Advisors

We extend our sincere gratitude to the incredible individuals who have served as Lay Advisors for the ReFresh Online Fatigue Management Program. Your valuable contributions, insights, and dedication have been instrumental in shaping this program into a valuable resource for individuals with Parkinson's.

We would also like to express special thanks to those Lay Advisors who generously shared their photos to be featured on our website. Your openness and willingness to be visual ambassadors have added a personal touch to our program, making it more relatable and encouraging for others.

The success of this program is a testament to the collaborative spirit and expertise that each Lay Advisor brought to the table. We are deeply appreciative of your time, commitment, and passion for making a positive impact.

Thanks to Ana Aragon

We would like to express our sincere gratitude to Ana Aragon, Occupational Therapist, 1960 - 2023, for her expert advice and invaluable contributions to our team. Ana's insights and dedication significantly enriched our work on the ReFresh project, leaving a lasting impact that we will always cherish.

Parkinson's UK

We extend our sincere appreciation to Parkinson's UK for generously allowing us to feature their exercise videos in our ReFresh Program. These videos, produced by 1fitLife, are a valuable addition to our initiative, supporting individuals with Parkinson's in managing fatigue through engaging and effective exercises.

MS Society's FACET program

The ReFresh Online Fatigue Management Program is an adaptation of the FACETS Program, which was designed for people with Multiple Sclerosis and funded by the MS Society. We are hugely grateful for the FACET team's the pioneering work and the opportunity to adapt their program for the benefit of individuals with Parkinson's.

Particular thanks go to Sarah Thomas, as well as her co-authors ·Peter W. Thomas, ·Roger Baker, ·Paula Kersten, ·Rosemary Jones, ·Angela Davies Smith, ·Vicky Slingsby, ·Alison Nockt, ·Charles Hillier, ·Kathleen T Galvin.

We also acknowledge the respective organisations that have played a vital role in the creation and validation of the FACET program;

Clinical Research Unit, School of Health and Social Care, Bournemouth University, UK

Person Centred Research Centre, School of Rehabilitation and Occupation Studies, Auckland University of Technology, New Zealand

MS Research Unit, Bristol and Avon MS Clinical Centre, UK

Dorset MS Service, Poole Hospital NHS Foundation Trust, UK

Faculty of Health and Social Care, Hull University, UK

Their pioneering work and support have made this program possible, and we're excited to adapt and extend these valuable resources to individuals with Parkinson's.