Designing a culturally appropriate self-management intervention for primary breast cancer patients...
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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
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Transcript of Designing a culturally appropriate self-management intervention for primary breast cancer patients...
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
Gather experiences from patients
and staff through
interviews, observation and group
discussions
Identify key 'touch points' (emotionally significant
points)
Create a short edited film is
from the patient
interviews
Show film to staff/
stakeholders and patients,
conveying patient
experiences
Bring staff / stakeholders and patients together to
work in groups to
identify and design
activities to improve the
service/ experience
“Patient Events”
Separate films for Black and South Asian
groups were made to
highlight their unique experiences
Break out discussion groups facilitated by a member of Breast Cancer Care staff
Joint staff and patient events held at library in Peckham
Prowess is launched! Patient
Promoting
RecOvery
Wellbeing
Equality and
Support in breast cancer
Survivors
Our experience of EBCD method• Engagement & participation which produces
collective co-design and ‘mobilised’ group
• Can engage ‘hard to reach’/ ‘seldom heard’
• Meaningful contribution and people feel valued
• Films - get people talking!
• Provided the opportunity to meet/ influence people may not have had opportunity to meet before
Our learnings:
• Provide tailored information: finance and employment rights and benefits and on skin and hair care for black and Asian women
• Use interactive & visual delivery methods: less emphasis on traditional teaching
• Promote social interaction with others: to help nurture and build peer support with others
• Use expert & lay facilitators: representing different ethnic communities and volunteer role models
• Involve family: to inform them and to address their information and support needs
• Be inclusive rather then exclusive
Next steps:
• PROWESS Feasibility trial (2014- 15) with embedded process evaluation
• Expected outcomes – Adapt our current services model– Work with partners in delivering the model or– Share our learnings and train others to deliver
the PROWESS intervention
