VOLITION
Shared decision-making for people living with multiple long-term conditions
VOLITION
Shared decision-making for people living with multiple long-term conditions
Invitation and brief summary:
You are being invited to participate in a research study that aims to help people over the age of 65 living with more than one long-term health condition be more involved in decision-making about their health care.
Before you decide whether to participate, please take time to read the following information carefully. Please, feel free to ask us if you would like more information or if there is anything that you do not understand.
Purpose of the research:
The aim of this research is to understand how good a leaflet we have created is in helping patients from various backgrounds take an active role in making health care decisions with their GP about their health.
We hope the findings from this study will help improve care and encourage a more joint relationship between patients and healthcare providers.
Why have I been approached?
We want to speak to around twenty participants from various backgrounds and different regions of the country to help us check the leaflet we have created.
To take part, you must be someone:
Participants may bring their formal or informal carer (e.g. relative / friend neighbour) to join the conversation. Carer’s insights can provide valuable additional perspectives as well as support to the participant during interviews – please click here for the carer’s information sheet.
*The long-term health problems should include two or more of: angina or long-term heart problem; arthritis or long-term joint problem; asthma or long-term chest problem; blindness or severe visual impairment; cancer in the last five years; deafness or severe hearing impairment; diabetes; epilepsy; high blood pressure; kidney or liver disease; long-term back problem; long-term mental health problem; long-term neurological problem.
What would taking part involve?
Taking part in this study involves filling out a consent form and participating in a ‘think aloud’ interview.
Consent form
We will provide you with a short written or online form that asks you to confirm that you understand what is involved and to agree to participate in the study. We will collect some personal information from participants, including names and contact details to be able to arrange an interview. This information will be kept confidential.
We will also collect demographic information such as age, gender, ethnicity, and geographic location to help us interpret our findings. We will not report any information that could identify you as an individual.
Think aloud interviews
During the interview, you will be asked to share your thoughts and reactions to the leaflet we have created as you look at them. This interview can take place online through Microsoft Teams or in-person at a location such as a community centre. We will also ask some questions to understand how well these materials meet their purpose and how they could be improved.
The interviews will be audio-recorded and then typed up word-for-word for analysis. Any identifiable information such as your name will be changed to an alternative name (pseudonym). This helps keeps people’s identities safe. We will delete this data within six months of the end of the study.
What are the possible benefits of taking part?
There are no immediate benefits to taking part in this research, but we hope that this study will help improve how people are involved in decision-making about their health care in the future.
What are the possible disadvantages and risks of taking part?
We do not expect any disadvantages to taking part in the research. However, if anyone feels uncomfortable, we can stop the interview and set up another in the future if desired.
What will happen if I don’t want to carry on with the study?
Everyone has the right to leave the study at any time without needing to give a reason. Just tell the researchers, who are listed at the bottom of this document.
If you withdraw before your interview data has been anonymised, we will remove all personal identifiable information and destroy your data. However, if you choose to withdraw after your data has been anonymised, we will keep only the anonymised data that cannot be linked back to you.
How will my information be kept confidential?
The University of Exeter processes personal data for the purposes of carrying out research in the public interest. The University will endeavour to be transparent about its processing of your personal data and this information sheet should provide a clear explanation of this. If you do have any queries about the University’s processing of your personal data that cannot be resolved by the research team, further information may be obtained from the University’s Data Protection Officer by emailing informationgovernance@exeter.ac.uk. or at Information Governance | Information Governance | University of Exeter
| Data collection and storage | Interviews will be audio-recorded and typed up within one month an estimate period of under one month. During the recruitment process, we will collect personally identifiable information from participants, including names, contact details, and basic information such as age, gender, cultural background, and the area where they live. To ensure the safety of participants’ identities, alternative names will be used during the analysis. We will not keep personal information after the project finishes, which is around 6 months. Anonymised research data will be stored securely on password-protected servers at the University of Exeter and will only be accessible to the research team. |
| Future use of data | We will keep the anonymised data for ten years after the project ends. We would like this anonymised research data to be available for future studies. |
| Communication | An overview of the findings will be shared through the project website and via the community groups who helped facilitate this research. |
| Opting out | If you want to opt out of the study or have any concerns, please contact us using the details at the bottom of the page. |
Will I receive any payment for taking part?
Participants, interpreters and carers will receive a £30 thank you payment through a choice of bank transfer or shopping voucher. Participants may have personal tax responsibilities for any payments received, and it is their responsibility to inform HMRC if applicable.
What will happen to the results of this study?
The results of this project will be shared through academic publications and conference presentations. The outcomes may also be used in future training sessions with GPs, focusing on materials that enhance shared decision-making practices.
Who is organising and funding this study?
The sponsor for this study is the University of Exeter. The research team is led by Jo Butterworth and the study is funded by the National Institute for Health Research. This study is part of the VOLITION project, which aims to undertake feasibility testing of an intervention aimed at facilitating the involvement of older patients with more than one long-term health problem in shared decision-making about their healthcare during GP consultations. Andrew Palmer is responsible for leading the recruitment and data collection within this project.
Who has reviewed this study?
This project has been reviewed by the Health and Life Sciences Research Ethics Committee at the University of Exeter Medical School (UEMS) (Reference Number 11249357).
Contact for any questions or requests regarding your participation in this research
In the event of queries or requests you may contact me using the following contact information.
Please email J.E.Butterworth@exeter.ac.uk or a.palmer6@exeter.ac.uk
To contact the UEMS Research Ethics Committee please email: uemsethics@exeter.ac.uk
You can also contact the University Research Ethics and Governance Team if you wish to make a complaint or comment please email cgr-reg@exeter.ac.uk, or
Dr Antony Walsh
Head of Research Governance, Ethics and Compliance
University Corporate Services, University of Exeter
G14, Lafrowda House, St Germans Road, Exeter, EX4 6TJ
DD: 01392 726621 email A.Walsh3@exeter.ac.uk
Thank you for your interest in this project.