Designing a culturally appropriate self-management intervention for primary breast cancer patients from different ethnic groups using ‘Experience Based Co-Design’ (EBCD) Dr Julie Wray, Chair, Service User Research Partnership (SURP) Diana Jupp, Director of Services
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Designing a culturally appropriate self-management intervention for primary breast cancer patients from different ethnic groups using ‘Experience Based.
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Designing a culturally appropriate self-management intervention for primary breast cancer patients from different ethnic groups using ‘Experience Based Co-Design’ (EBCD)
Dr Julie Wray, Chair, Service User Research Partnership (SURP)Diana Jupp, Director of Services
AcknowledgmentsChief Investigator:
Karen Scanlon - Head of Research & Evaluation, Breast Cancer Care
Co-authors:
Drs Charlotte Tompkins and Judith Offman - researchers, Breast Cancer Care
Catherine Dale - Programme Manager Patient Centred Care, Guys & St Thomas’s NHS Trust
Dr Jo Armes - King’s College London
Chrissie Hepworth and Dr Julie Wray Service User Research Partnership, Breast Cancer Care
Professors Emma Ream and Seeromanie Harding - King’s College London
London and South Services team, Breast Cancer Care
Research participants
Staff and stakeholders
The Big Lottery Fund for funding this project
UK wide support and information
Moving Forward Courses
Improving the wellbeing of breast cancer survivors (4 yrs)
Aim: to examine the needs of breast cancer survivors from diverse ethnic and socio-economic backgrounds and develop and test an intervention to address these needs.
Overall research aims
• To understand the needs (phase 1)• To understand the barriers and type of
intervention needed (phase 2)• To design, develop and evaluate an
intervention to address these needs and overcome barriers (phase 3)
The research so far…Phase One
• 66 qualitative interviews with women across England from different minority ethnic and socio- economic groups
• Findings:– Lack of knowledge and awareness about breast cancer, – stigma and fear of cancer – Social isolation – unmet emotional needs after treatment
Phase 1 Outcome: Uncertainty about type of support intervention required
• Which ‘need’ to target?
• Participants raised many different ideas about type of intervention(s) required
• Systematic Review - Q. Can we culturally adapt an intervention that already exists?
• We needed patients and experts to help co-design our intervention
Phase 2: Experience based co-design (EBCD) method
A staged participatory research approach which seeks to capture and understand how people experience a service to improve future experiences. We used an accelerated approach