Improving access to Breast Cancer care for South Asian communities in London
The project examines how we could improve access to breast cancer care pathways for South Asian people living with and beyond breast cancer and their families/carers.
We want to magnify people living with and beyond breast cancer and their families/carers' voices, who may feel not involved in the main care narrative.
We plan to do this by inviting you into as many steps as possible within this project as 'experts by experience' and providing a safe space to share knowledge and make decisions.
Together, we will:
- explore the challenges South Asian people living with and beyond breast cancer and their families/carers face around accessing care and why; and
- create and design solutions together, led by you and fellow participants to promote better access to cancer care from diagnosis.
We invite expressions of interest from:
- Individuals (aged 18 to 65) who are of South Asian descent living with or beyond breast cancer; and/or
- Family members and carers (aged 18 to 65) of South Asian descent, caring for someone living with or beyond breast cancer
You must also:
- Have experience of using NHS cancer care support and/or other support (e.g. community, personal); and
- Live in London (United Kingdom)
The research team will also recruit healthcare professional participants to join the participatory workshop from a non-VOICE platform.
What will I be asked to do?
Individuals will participate in an online interview, and workshop split into three sessions on different days (each session lasting 1-3 hours), i.e., total of 6-7 hours participation.
Phase 1: Interview
Participants will be first invited to an individual interview session where we will talk about your own, or the person you care for, experiences of cancer diagnosis and any positives and negatives of your experiences. Findings from this interview will be used for the next part of the project.
Phase 2: Design Workshops
The online workshops will involve a group of participants (persons living with and beyond breast cancer, family members and carers, and health and social care professionals), to generate ideas for potential improvements and solutions to better access to breast cancer care for South Asian communities.
Ideally, we would like participants to be involved in both stages of the project. However, you can choose to participate in the first phase but not the second phase. Please note however, that if you wish to join in the second phase, you must participate in the first phase.
We also understand that circumstances change, therefore even after you decide to participate in the project, you are free to change your mind and withdraw without giving us any reasons.
Public Advisory Group:
As part of this project, we would also like to develop a public advisory group inviting 5 participants to provide additional support and advice throughout the project.
Advisors will go through the same phases as other participants, with an additional 3–4-hour commitment to assist in analysing and interpreting findings across the two phases.
Please note: Public Advisors are expected to participate in all phases
You will have the option to indicate if you would like to be considered as a public advisor within the VOICE sign-up form or you can also reach out to the researcher to express an interest or for further information (will add contact details here)..
When and where?
The project will start in October 2021 and end in April 2022. All individual sessions and group sessions will be scheduled with participants to find a time that is convenient.
- Individual Interview (1-hour max in October-November 2021)
- A series of design workshops (in a total of 5-7 hours, spread across January – April 2022)
All meetings will primarily be conducted online, using Zoom; however, participants can indicate if they prefer an in-person meeting. .
We will abide by the most updated COVID guidance for any optional in-person meetings.
Will I get anything for taking part?
Participants will be paid an hourly rate of £25 per hour (work from home fee included) to participate in the project.
If anyone is concerned about the impact of receiving a monetary reward for their involvement on benefits, you can get in touch with us, and we will signpost you to confidential and free advice.
In addition to payment, participants can also expect to grow their network of researchers, healthcare practitioners, and people who have an interest in improving access to cancer care for South Asian communities in London.
Participants will also gain experience in co-design to improve healthcare and teamwork and online workshop experience.
If the project raises any difficult emotions, participants can request to be put in touch a Mental Health First Aider from Imperial College for support. We can also key contact/support from the cancer information specialists.
Participants will be provided with links on how to use software, including resources on how to use Zoom and the contact details of the research team for any questions.
Before the workshop, the attendees will receive a summary of the project in Plain English.
How do I take part?
Please register your interest by completing a short online form available from the following link: https://imperial.eu.qualtrics.com/jfe/form/SV_1MrxfC6mzlLlfLg
The deadline to apply is 11pm on the 31st October 2021.
Application will be reviewed on an ongoing basis until the deadline.
If you are application is successful and you meet the eligibility requirements, you will receive an email with further information about the project including participant information sheet. If, following review of the participant information sheet, you would like to take part in the project you will be sent a consent form for the relevant phase of the project.
If you have any trouble accessing/completing the form please get in touch with Ms Soh-yon Park’s email: [email protected] or 07444 457022
The above study was approved by Head of Department on 18/08/21 and by the Research Governance and Integrity Team (RGIT) on 06/09/21.
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