Participant Information Sheet
Date Information Sheet Produced: 13 April 2023
Project Title
Co-designing a mini, Aotearoa Osteoarthritis booklet
An Invitation
My name is Dr Daniel O’Brien, and I am a senior lecturer in the physiotherapy department at AUT university. I have a specific interest in the management of osteoarthritis (OA) and between 2020 and 2022 I led a study with the aim of developing an OA Guidebook for New Zealanders living with the disease. This book has now been published Aotearoa Osteoarthritis Guidebook While developing the guidebook, many people suggested we also create a short version, which just included the essential information. So, this is what we are doing now.
What is the purpose of this research?
The purpose of this study is to develop an short OA booklet that is responsive to the needs of New Zealanders living with the disease. Once completed this booklet will be used to support the education and behaviour change of people living with OA, and it will be freely available to all New Zealanders. Furthermore, the findings of this mahi may be used for academic publications and presentations.
How was I identified and why am I being invited to participate in this research?
You have been identified because you either commonly treat or support people living with OA, or are living with OA yourself. If you are someone who lives with OA, you will have been contacted by Arthritis New Zealand because you are a member of their local support group. You are being invited to participate in this study because we would like to hear your thoughts and ideas about what would need to be included in a short OA booklet and what it should look like.
How do I agree to participate in this research?
Your participation in this research is voluntary (it is your choice) and whether or not you choose to participate will neither advantage nor disadvantage you. You are able to withdraw from the study at any time. If you choose to withdraw from the study, then you will be offered the choice between having any data that is identifiable as belonging to you removed or allowing it to continue to be used. However, once the findings have been produced, removal of your data may not be possible.
Should you wish to participate in the study, please contact the lead researcher Dr Daniel O’Brien (dobrien@aut.ac.nz). He will take your contact details and register you for the codesign workshop.
What will happen in this research?
This study will be conducted in two phases. The first will use a co-design workshop methodology. The workshop will take place on Tuesday 23th May at Arataki Community Centre and will run for 2 hours from 10-12 noon (we will stop in the middle for a short meal which will be provided). The workshop will be facilitated by Dr Daniel O’Brien and Blake Francis from AUT. They will lead a series of talks that ask the participants to discuss, write and draw their thought and ideas about what would make a good booklet. The discussion may be audio recorded and transcribed for later analysis and photographs of the process may be taken to inform the data analysis.
If you choose to take part in this first workshop, you will be asked to share your views on what information you would like in an education resource and how you would like this information presented. This will take place as a group discussion with other people.
During the workshop, we will ask you to tell us what information you would like in an education resource. We will show you some cards describing topics that we think would be useful to include in the education resource to see if you agree or can think of other topics. This will help us understand how best to create the education resource and what to include. We will also ask you some background information about yourself such as age, ethnicity, whether English is your usual language of conversation and what are your experiences of living with OA or
supporting or treating people who are To respect the privacy of others involved in the discussions, it is important you do not share what other people have said at the workshop with people who are not involved in this project.
After this workshop, we will make up a paper prototype of the education resource based on the views expressed in this first workshop. Following the co-design workshop, a communication design, with support from the design team will take the data collected from the workshop and develop a prototype of the booklet. The second phase of the study involves a copy of this prototype being posted to you with a short questionnaire asking about your thought about the prototype, i.e. what do you like and what can be improved? Once completed you will be asked to return the survey to the research team via prepaid envelope.
What are the discomforts and risks?
We do not anticipate any discomforts or risks associated in participating in this research.
How will these discomforts and risks be alleviated?
Should you have any concerns during or after participating in the research, you can contact the primary research on 021815717 or at dobrien@aut.ac.nz.
What are the benefits?
There may be no direct benefit to you as a result of participating in this research beyond the knowledge that you are helping to develop an educational resource that may help people living with OA.
How will my privacy be protected?
All of the conversations and communications that occur during the co-design workshop and survey will be treated with the upmost confidentiality by the research team and the other participants. Should you wish to, you can be acknowledged as a participant of the co-design workshop that led to the development of the OA booklet (see consent form). This acknowledgement will appear in all publications and presentations of the work
What are the costs of participating in this research?
The only cost is your time. The co-design workshop will take approximately 2 hours, and the survey and prototype feedback will take approximately 1 hour.
What opportunity do I have to consider this invitation?
You will have 2 weeks to consider this invitation.
Will I receive feedback on the results of this research?
All participants will be provided with a one-page summary of the study findings (should they want one). Additionally, when the booklet is completed, all participants will be provided with a PDF copy.
What do I do if I have concerns about this research?
Any concerns regarding the nature of this project should be notified in the first instance to the Project Supervisor, Dr Daniel O’Brien, dobrien@aut.ac.nz, phone 09 921-9999 ext. 8707.
Concerns regarding the conduct of the research should be notified to the Executive Secretary of AUTEC, ethics@aut.ac.nz , 921 9999 ext 6038
Whom do I contact for further information about this research?
Please keep this Information Sheet and a copy of the Consent Form for your future reference. You are also able to contact the research team as follows:
Researcher Contact Details:
Dr Daniel O’Brien, dobrien@aut.ac.nz, phone 09 921-9999 ext. 8707.
Project Supervisor Contact Details:
Dr Daniel O’Brien, dobrien@aut.ac.nz, phone 09 921-9999 ext. 8707.
Approved by the Auckland University of Technology Ethics Committee on 4th November 2019, AUTEC Reference number 19/402