Researching therapy provision for adults with cerebral palsy across Scotland
Thank you very much for your interest in Capability Scotland’s research into therapy provision for adults with cerebral palsy across Scotland
What is the purpose of this research?
We are interested in looking at therapy provision for adults with cerebral palsy across Scotland.For the purposes of this research, therapy provision will includeoccupational therapy, physiotherapyand speech and language therapy. The main aim is to research the therapy provision landscape for adults with cerebral palsy in Scotland.
Do you have to take part?
Participation is entirely voluntary and you can withdraw from the research at any time without having to give a reason for doing so and without any consequences.
What will you do in the research?
If you agree to take part you will be asked to complete an online questionnaire. This questionnaire will ask you about your experience of aging with cerebral palsy and therapy provision and will take around 20 minutes to complete. There are no right or wrong answers to any of the questions. Your responses will be kept confidential and will only be used for the purposes of this research.
Why have you been invited to take part?
We are looking to recruit adults21+ with a diagnosis of cerebral palsy from across Scotland.Please feel free to complete this questionnaire on behalf of an adult with cerebral palsy (please relate as closely as possible to the experiences, views and feelings of the individual).
What happens next?
If you are happy to continue and be involved in this research you will be asked to give you consent to confirm this. If, having read this information sheet, you would not like to be involved in thisresearch, thank you very much for your time.
Contact details:
Dr Elise Palmer (Campbell)
Capability Scotland
Berkeley House
285 Bath Street
Glasgow
G2 4JL
Tel: 0141 433 8723. Mobile: 07508 662 137
Email:
Researching therapy provision for adults with cerebral palsy across Scotland
Are you happy to take part in this research? By ticking 'Yes' you are saying that:
- You have read and understood the informationon the previous pageand the researcher has answered any questions.
- You understand thatyour participation is voluntary and thatyou arefree to withdraw from the research at any time, without having to give a reason and without any consequences.
- You understand thatyou can withdrawyour responses from the study at any time.
- You understand that any information provided will be confidential and you will not be named at any point.
☐Yes – I am happy to take part in this research
☐No – I do not want to take part in this research
Researching therapy provision for adults with cerebral palsy across Scotland
- We are looking for adults who are 21+ with cerebral palsy to take part in this research, please confirm that this applies to you:
☐Yes – I am 21+ and have a diagnosis of cerebral palsy
☐No – I am not 21+ and/or do not have a diagnosis of cerebral palsy
- Which of the answers below applies to you?
☐I am an adult with cerebral palsy
☐I am a family member/carer/support worker helping to and/or completing this survey on behalf of an adult with cerebral palsy (If you are completing this questionnaire on behalf of someone, please relate as closely as possible to the experiences, views and feelings of the individual)
Researching therapy provision for adults with cerebral palsy across Scotland
We would like to know a little bit more about you, please complete the following:
- Please enter your date of birth:
Day______Month______Year______
- What is your gender:
Male ☐
Female☐
- Which local authority area do you live in?
Aberdeen☐Aberdeenshire☐Angus☐
Argyll and Bute☐Clackmannanshire☐ Dumfries and Galloway☐
Dundee☐East Ayrshire☐East Dunbartonshire☐
East Lothian☐East Renfrewshire☐Edinburgh☐
Falkirk☐Fife☐Glasgow☐
Highland☐Inverclyde☐Midlothian☐
Moray☐Na h-EileananSiar (Western Isles)☐
North Ayrshire☐North Lanarkshire☐Orkney☐
Perth and Kinross☐Renfrewshire☐Scottish Borders☐
Shetland☐South Ayrshire☐South Lanarkshire☐
Stirling☐West Dunbartonshire☐West Lothian☐
- What are you living arrangements? Please tick which answer applies to you:
-I live alone☐
-I live alone but with supported care☐
-I live with my family☐
-I live in residential care☐
-Other☐
…………………………………………………………………………………………………..
- Have you been diagnosed with any of the following? Please tick which answers apply to you (more than one answer can be selected):
-Epilepsy☐
-Hearing impairment☐
-Learning disability☐
-Visual impairment☐
-Other☐
…………………………………………………………………………………………………………………………………………………………………………………………………….
Researching therapy provision for adults with cerebral palsy across Scotland
We would like to know about your experience of aging with cerebral palsy and therapy provision in Scotland in your adult life (21+). For the purposes of this research, therapy provision will include occupational therapy, Physiotherapy and Speech and Language therapy. Please also note that when ‘professionals’ are mentioned in the questions below this includes occupational therapists, physiotherapists, speech and language therapists, doctors and nurses.
- Has a professional/s ever discussed or informed you about possible changes for individuals with cerebral palsy as they get older?
Yes☐
No☐
- Would you say that you have experienced changes with age that are related to your cerebral palsy (e.g. reduced mobility)?
Yes☐go to question 2i.
No ☐go to question 4.
2i.Please select which of the following changes you have experienced and/or provide additional information under other (more than one answer can be selected):
Breathing☐
Contractures☐
Fatigue☐
Mobility☐
Musculoskeletal☐
Pain☐
Scoliosis☐
Speech☐
Other:☐
……………………………………………………………………………………………………………………………………………………………………………………………………
- Have you wanted to access therapy in your adult life to help you with these changes? (occupational therapy, physiotherapy, speech and language therapy)
-No☐go to question 6.
-Yes and I have been successful☐go to question 4
-Yes and I have been unsuccessful☐go to question 3i
-Yes. I have been successful with accessing some aspects of therapy but unsuccessful with accessing other aspects of therapy☐ go to question 3i
3i.You stated above that you have wanted to access therapy in your adult life to help you with changes, but have been unsuccessful. Please select which of the following statements best describes your experience and/or provide additional answers under other (more than one option can be selected):
I am not sure where to access the therapy provision I need☐
The therapy input I need is not provided in the public sector☐
It is too expensive to access the therapy input I feel I need☐
Health professionals have been unsure where to refer me to for therapy input☐
Health professionals do not think I need therapy input☐
Other☐
………………………………………………………………………………………………………………………………………………………………………………………………
- Please select which of the following services you have accessed since turning 21:
I have not accessed any therapy☐go to question 6
Occupational therapy☐go to question 5
Physiotherapy☐go to question 5
Speech and language therapy☐go to question 5
- Please select which of the below statements best describes your experience of therapy provision in your adult life (21+):
Very good☐
Good☐
Adequate☐
Poor☐
Very poor☐
5i. Based on your experience of therapy provision in your adult life (21+), please select which of the following statements you would agree with (more than one option can be selected):
-I have received therapy in my adult life to help with changes related to my cerebral palsy and I am happy with the level of input ☐
-I have received therapy in my adult life to help with changes related to my cerebral palsy and I am happy with the quality of input ☐
-I have had to fight to receive therapy input in my adult life☐
-Professionals have good knowledge about cerebral palsy☐
-Professionals do not have good knowledge about cerebral palsy☐
-Professionals have referred me to the services that I needed☐
-Professionals are not sure where to refer me☐
-The organisation and signposting to inform me about therapy provision is good ☐
-The organisation and signposting to inform me about therapy provision is poor ☐
-Professionals communicate well with me☐
-Professionals are unsure how to communicate with me and do not understand my needs ☐
- Please read the following quote from The Alliance:
‘Self-management is about people living with long-term conditions being in the driving seat. It supports people to live their lives better, on their terms. Self-management supports and encourages people living with long-term conditions to access information and to develop new skills to find out what’s right for their condition and, most importantly, right for them’.
Has a health professional ever talked to you about self-management?
Yes☐go to question 6i
No☐go to question 6ii
6i.You have indicated that a health professional has spoken to you about self-management. Did you find this useful?
Yes☐go to question 7
No☐go to question 7
6ii. You have indicated that a health professional has never spoken to you about self-management. Would this be something that you would be interested in for the future?
Yes☐
No☐
- Can you suggest how therapy provision in Scotland for adults with cerebral palsy may be developed? Please selectwhich of the following statements that you agree with and/or provide additional answers under other (more than one option can be selected):
-Therapy provision for adults with cerebral palsy is good and does not need to be developed ☐
-Increase service provision☐
-More individual control of care plan and where funding is spent☐
-Clearer/improved transition pathways☐
-Better signposting to adult services that are available☐
-Make referral pathways clearer☐
-Provide more information about possible age related changes that can occur for adults with cerebral palsy and signs to watch out for ☐
-Provide training to help professionals understand about the communication needs of adults with cerebral palsy ☐
-Provide a review service where a specialist who understands about cerebral palsy ensures that you are receiving the appropriate care ☐
-Other (please specify):☐
- Any additional comments about your experience of therapy provision in Scotland would be welcomed:
......
END OF QUESTIONNAIRE
Thank you very much for taking the time to complete this questionnaire, we really appreciate your feedback.
For further information about Capability Scotland’s research into therapy provision for adults with cerebral palsy across Scotland, please visit the link below:
You can also contact Elise Palmer, Research Assistant, if you have any further questions:
Dr Elise Palmer (Campbell)
Email:
Phone: 0141 433 8723
Mobile: 07508 662 137