Exploring physical activity in people living with rare neurological conditions

Survey for family members and/or carers

Participant Information Sheet (PIS)

You are invited to participate in a research study being conducted by Prof Monica Busse (Cardiff University), Dr Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH), Dr Valentina Buscemi, Prof Annette Boaz, Prof Helen Dawes, Prof Thomas Jaki, Prof Fiona Jones, Prof Jonathan Marsden, Prof Rebecca Playle, Prof Mike Robling, Prof Lynne Rochester, Prof Lorna Paul, Rachel Breen, Elizabeth Randell.

 

Project Summary

The PARC (Physical Activity for people with Rare neurological Conditions) programme development work is currently gathering information prior to developing the PARC intervention for the next stage of funding. The PARC intervention will be a self-management program to support physical activity for people with rare neurological diseases, including ataxias (e.g. Friedreich’s ataxia), hereditary spastic paraparesis, Huntington’s disease, neuromuscular diseases (e.g. polyneuropathies, myasthenia and muscular dystrophies), motor neurone disease, atypical Parkinsonisms. With this survey, we would like to hear from you and understand your opinion regarding your experience of supporting your family member in being physically active and possible barriers or challenges you may have faced in doing this.

 

What will I be asked to do?

This research is a survey based on multi-choice and open questions. The survey is also divided in two parts: About you (e.g. age) and About physical activity (e.g. questions on whether and how you support your family member or the person you care for to be physically active). Your consent to participate is given after reading this Participant Information Sheet and clicking on the ‘I agree to take part in this study’ button at the bottom of the page.

 

How much of my time will I need to give?

The online survey will take about 15 minutes to complete.

 

What specific benefits will I receive for participating?

Participating in the study will provide you with the opportunity to reflect on your experience of supporting your family member (or the person you care for) to be physically active, and barriers that you may have faced in doing this in your daily life.

 

Will the study involve any discomfort for me? If so, what will you do to rectify it?

Participation is unlikely to involve any discomfort for you. However, if you do start to feel uncomfortable at any stage of the study, you will be free to take a break or terminate the online activity at any time without repercussion.

 

How do you intend to publish the results?

Please be assured that only the researchers will have access to the raw data you provide and that all your data will be non-identifiable. The findings of the research will be published in peer-reviewed journals and presented at seminars and conferences.

 

Can I withdraw from the study?

Participation is entirely voluntary: you are not obliged to be involved and, if you do participate, you can withdraw at any time without giving any reason and without any consequences.

 

Can I tell other people about the study?

Yes, you can tell other people about the study by providing them with the research manager’s contact details (below). They can contact the research manager to discuss their participation in the research project and obtain an information sheet.

 

What if I require further information?

Please contact Dr Valentina Buscemi should you wish to discuss the research further before deciding whether or not to participate. Email: valentina.buscemi@nhs.net

 

What if I have a complaint?

This study has been approved by the Research Ethics Committee of School of Medicine, Cardiff University. The Approval number is 19/60. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Dr James White, Senior Lecturer in Public Health, Cardiff University, e-mail address: whitej11@cardiff.ac.uk. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.

1. 

I confirm that I have read the information for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily.

I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason.

I agree to take part in this study.

Yes  
2. 

About you:

What is your relationship with the person living with a rare neurological condition?

Partner or spouse  
Parent  
Friend  
Paid carer  
Othe family member  
Other (please specify)   
3. 

What is your gender? 

Prefer not to say   
Please, specify   
4. What is your age?
Prefer not to say   
Please, specify   
5. Which region do you live in?
South East England  
South West England  
Greater London  
Wales  
East Midlands  
West Midlands  
East of England  
North East England  
North West England  
Scotland  
Northern Ireland  
Yorkshire & the Humber  
6. 

Which of the following best represents your ethnic heritage?

Asian  
Black  
Chinese  
Mixed  
White  
Unknown  
Other, please give details   
7. Which is the neurological condition of the person you care for?

 

Ataxia (e.g. Friedreich’s ataxia, cerebellar ataxia, episodic ataxia, idiopathic ataxia)  
Hereditary spastic paraparesis  
Huntington’s disease  
Neuromuscular disease (e.g. myasthenia gravis, muscular dystrophy, myositis, polyneuropathies, mitochondrial disease)   
Motor neurone disease  
PSP (progressive supranuclear palsy)  
MSA (multiple systems atrophy)  
CBD (corticobasal degeneration)  
I don’t know  
Other, please specify   
8. 

What age was the person you care for when they noticed their first symptoms?

Can't remember  
Please, specify   
9. Which best describes the level of mobility of the person you care for?

 

Walks with no assistance (or aid) as far as he/she/they need to  
Walks with no assistance (or aid), but distance is limited  
Walks with assistance (or aid) as far as he/she/they need to   
Walks with assistance (or aid), but distance is limited  
Uses a wheelchair always  
Uses a wheelchair sometimes  
Other, please give details   
10. Which aids for walking does the person you care for use? Select all that apply

 

Walks with the aid of orthotics, splints, braces or supports   
Walks with 1 stick  
Walks with 2 sticks  
Walks with 1 elbow crutch  
Walks with 2 elbow crutches  
Walks with rollator frame  
Walks with another person  
Walks with a pushchair or buggy  
Wheelchair that he/she/they propel with hands  
Electric scooter  
Powered wheelchair  
Wheelchair that someone else pushes  
Functional Electrical Stimulation  
He/she/they are unable to leave his/her/their bed  
He/she/they do not use any mobility aids  
Other, please give details   
 If you ticked more than one, please state which of the above represents their primary form of assistance and why.
11. 

About physical activity

Does the person you care for participate in physical activity (e.g. engaging in house chores, work, recreational activities or exercising) regularly (i.e. more than once a week)? Please, see definition of physical activity above at the beginning of the survey.

Yes (please go to question 12)   
No (please go to question 14)  
Sometimes (please go to question 12)   
12. 

If he/she/they participate in physical activity, what do they do? Please, give details of type of activity, for how long and how often.

 Please, give details of: 1. Type of exercise or activity; 2. How long they do it for (minutes); 3. How often (how many times per week)
13. 

Does the person you care for do physical activity independently?

Yes (please, go to question 15)  
No (please, go to question 14)  
Sometimes (please, go to question 14)  
14. 

If not, can you describe what type of assistance he/she/they need in order to be physically active (e.g. help of a person or carer, walking aid, reminders such as apps, facility adaptations etc.)

 Please provide details in this box:
15. 

Please, tick the options on the table (ranging from strongly disagree to I don’t know) that most suits your opinion for each item:

 Strongly disagreeDisagreeNeither disagree or agreeAgreeStrongly agreeI don't know
He/she/they are not interested in being physically active
I need to encourage the person I care for to be physically active
I have enough knowledge on the benefits of physical activity for the person I care for
I have had the opportunity to discuss physical activity and its benefits with a health care professional
I’m able to follow the advice about physical activity/exercise from health care professionals
I am confident about how to support the person I care for to be physically active successfully
I know how to support the person I care for to be physically active safely
I feel I have enough resources (e.g. knowledge, equipment, access to facilities, time) to be able to support the person I care for to be physically active
The person I care for can easily access exercise facilities
I know where to seek support if I need to, in order to help the person I care for to be physically active
I can access support quickly if I need to, in order to be able to help/assist the person I care for to be physically active
I feel well supported by community services to be able to help/assist the person I care for to be physically active
I have enough time to support the person I care for to be physically active
 Please give more information or comment here if needed:
16. Is the support you receive to help/assist the person you care for to be physically active usually from: (select all that apply)
General practitioner   
Local neurologist  
Local therapists (e.g. physiotherapy, occupational therapist)   
Local nurse  
Local exercise trainers  
Specialist neurologist  
Specialist therapists (e.g. physiotherapy, occupational therapist working in hospital)  
Specialist nurse  
I have not received any type of support  
Other (please specify)   
 Please give more information on WHERE you access support to help the person you care for to be physically active, and HOW OFTEN you receive this support.
17. 

Where do you go to seek more information on physical activity and exercise for the person you care for? Select all that apply

Web pages  
Community initiatives  
Peers  
Health care specialists  
Gym and exercise trainers   
Charity website and publications  
Research reports  
Guidelines (e.g. NHS guidelines)  
Courses and conferences  
Other, give details    
18. 

Do you experience challenges or difficulties in supporting the person you care for to be physically active?

Yes (please go to question 19)   
No (please go to question 21)  
19. If you do experience challenges in supporting the person you care for to be physically active, please DESCRIBE THESE CHALLENGES.
 Please, give details in this box:
20. 

If you do experience challenges, please describe WHAT YOU WOULD NEED in order to be able to better support the person you care for to be physically active.

 Please, give details in this box:
21. 

What solutions have you found in order to be able to support the person you care for to keep being physically active (i.e. what has worked so far)?

 Please, give details in this box:
22. Please describe the type of physical activity or exercise you think has benefitted the person you care for?
 Please, give details in this box:
23. Where do you access financial resources to help to cover the costs to support the person you care for to be physically active?
NHS  
Charities   
Local funding schemes  
Self-funded (e.g. private group class)  
He/she/they don't need financial support to engage in physical activity  
Other, please give details   
24. How do you monitor how active is the person you care for? Select all that apply
I don’t monitor his/her/their activity, but I think it's important  
I don’t believe monitoring is necessary  
Monitoring using online applications (Apps)  
Smart-watches and step counters (e.g. Fitbits)  
He/she/they are regularly monitored by health care professionals (e.g. nurse or physiotherapist)  
Monitoring using diaries, log books or attendance records   
Other, give details   
25. 

What have been the POSITIVE  effects of being physically active for the person your care for (in your opinion)?

 Please, give details in this box:
26. 

What have been the NEGATIVE effects of being physically active for the person your care for (in your opinion)?

 Please, give details in this box: