Participant information sheet
1. Study title.
The management and protection of body shape for adults with a profound and multiple
learning disability: A Delphi consensus study exploring physiotherapist’s perceptions
of current and best practice.
2. Invitation to participate.
You are being invited to take part in a research study that is being undertaken as part
of a professional doctorate program. Before you decide to participate it is important
that you understand why the research is being done and what it will involve. If there is
something that is not clear or you feel you need more information then please contact
me for clarification. Please make sure you read the following information carefully
before making your decision.
3. Why and how have I been chosen?
All Physiotherapists who are members of the Chartered Society of Physiotherapy and
the Association of Chartered Physiotherapists for People with a Learning Disabilities
(ACPPLD) are being asked to participate in this study. The researcher considers that
by being a member of the ACPPLD you are interested and keen to contribute to the
development of the physiotherapist’s role within the field of learning disabilities and the
protection of body shape.
4. What is the purpose of the study?
The effect of a posture management programme on posture and function and the
potential to prevent deformity in children is well documented (Gough.2009). This
approach to managing body shape distortion in immobile adults with a profound and
multiple learning disability has been gathering pace over the last decade. However,
there is minimal evidence as to the efficacy of these programmes and what
physiotherapists consider to be best practice.
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Therefore the purpose of this study is to explore and identify what constitutes current
and best practice for physiotherapists involved in the 24 hour management and
protection of body shape for immobile adults with a profound and multiple learning
disability, and contribute knowledge as to the efficacy of this approach as part of the
physiotherapists ‘tool box’.
5. Do I have to take part?
There is no obligation for you to take part, it is entirely up to you as to whether you
decide to participate or not. You will be required to sign a consent/assent form,
confirming your intentions. By signing and returning this form you are either
consenting/assenting to participate in the whole Delphi process.
You will be free to withdraw from the study at any stage without giving a reason. If you
inform the researcher of your withdrawal after the 1st Delphi Round then your data
submitted to date will still be used as part of the study. However, if you withdraw within
the stated timescale, of 48hours or 2 days immediately after submission of your
responses to the 2nd or subsequent Delphi Rounds, then your data will not be used as
part of the study. Unfortunately, if the researcher receives notification of your
withdrawal after this time your data up to that point will be used as part of the study.
Your participation in this study is entirely your decision, and should you decide not to
participate or to withdraw from the study at a later date, there will be no penalty.
6. What will happen to me if I take part?
The success of this study is dependent on the commitment of all participants,
therefore it is important that you fully consider the time required to participate.
The study will be using the Delphi approach, which consists of a series of
questionnaires or rounds, usually three, which you will be required to respond to within
stated deadlines, over a period of approximately 6 months. The time required to
complete each questionnaire will vary from person to person. However, it is
anticipated that each round should take no longer than 30 minutes, with the exception
of the first round as you will be commenting on statements and expressing opinions on
topics related to the protection of body shape. As this study is seeking your opinion
there is no right or wrong answer.
The questionnaires are aimed at achieving a consensus on what constitutes current
and best practice in the protection of body shape for adults with a profound and
multiple learning disability. You will receive anonymised feedback of all the
participants’ responses between each round.
Within two weeks of the deadline for returning the signed consent/assent form you will
be sent, via email, the link for the first round Delphi questionnaire. This first
questionnaire will consist of three sections; section 1 will collect some demographic
data, in section 2you will be asked to give your opinions, using free text, on different
aspects of protecting body shape, and finally section 3 will ask about current and best
practice in the protection of body shape. The subsequent Delphi rounds will require
you to rank statements, using a likert scale, relating to the practice of protecting body
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shape, that have been generated from all participant’s responses to the previous
rounds. At each stage you will be given a timescale in which to complete and return
the questionnaire.
Please take note of the following points:
 Your participation is entirely voluntary.
 You may withdraw from the study at any time without giving a reason.
 You will remain anonymous to the other participants throughout the Delphi
process and only the researcher will be able to identify you.
 All the information that you provide will be treated in line with the NHS
Confidentiality Code of Practice (2003). You will not be identifiable by any of the
other participants when the results of the study are reported
 All information will be handled and stored in accordance to the requirements of
the data Protection Act 1998. The information gathered will only be available to
the researcher and her supervisory team.
 All information and data relating to this study will be kept indefinitely.
 Should the findings of the study be published in a professional journal or
presented in any format at conferences then your details will remain
anonymous.
7. What if something goes wrong?
The researcher is not aware of any complications or risks to you should you choose to
participate in this study. However, should you feel unhappy about any stage of the
process and wish to seek clarification or make a complaint then please contact either
the researcher or a member of the supervisory team, contact details are at the end of
this information sheet.
8. Will my taking part in this study be kept confidential?
If you consent to take part in this study, your name will only be known to the
researcher and will not be disclosed to any other participant or revealed in any reports
or publications that result from the study. You will remain anonymous at all times to
the other participants throughout the study and will only be identifiable to the
researcher. All information will be handled and stored in accordance to the
requirements of the data Protection Act 1998.
However, if any abusive or unprofessional behaviours or actions be disclosed and/or
discovered then confidentiality will be breached and the supervisor of the research
study will be informed (in the first instance) and if deemed appropriate further actions
may be taken.
9. What happens when the research study stops?
The study will provide a greater understanding of physiotherapists’ current practice in
the assessment and management of body shape deformity in adults with a profound
and multiple learning disability. The results will also be used to inform the development
of best practice guidelines to assist with the standardization and benchmarking of
physiotherapists’ clinical practice in this area. The findings will also be sent for
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publication in relevant professional journals and may also be presented at
conferences.
10. Who is organising and funding the research?
The research is part of a professional doctorate programme that the researcher is
undertaking at Teesside University. The researcher is an employee of Tees Esk and
Wear Valleys NHS Foundation Trust.
The principle investigator is:
Jenny Tinkler, Clinical Specialist in Complex Needs, Physiotherapy.
11. What are the possible benefits of taking part?
I cannot promise that the study will help you as an individual, but the information that
is gathered will help determine best practice and provide some guidance in the
protection of body shape for adults with a profound learning disability.
12. Who has reviewed this study?
The study was approved by the Ethics Committee of Teesside University onthe 26 th
June 2013 and was registered with the Research and Development Department of
Tees Esk and Wear Valleys NHS Foundation Trust on the 7th November 2013.
13. Further information.
If you would like further information regarding any aspect of this study then please
contact either myself:
Jenny Tinkler, Clinical Specialist in Complex Needs, Physiotherapy.
Shannon House,
Mandale Business Park,
Durham.
DH1 1TH.
Email: jenny.tinkler@nhs.net.
Or if you would prefer you can contact a member of the supervisory team, who are:
Dr Josette Bettany-Saltikov by email at J.B.Saltikov@tees.ac.ukand
Dr Marie Gressman by email at M.Gressman@tees.ac.uk
Thank you for taking the time to read this information.
November2013.
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