Download How can we make a supportive and educational

How can we make a supportive
and educational programme for
breast cancer patients who have
finished treatment that is
accessible to women from
different ethnic and social
backgrounds?
Dr Judith Offman
Intervention Research Manager,
Breast Cancer Care
Breast Cancer Care: a UK-wide charity
We provide information and offer emotional and
practical support at every stage
We bring people affected by breast cancer
together
We campaign for improvements in standards of
support and care
Why is cancer survivorship
important?
• Approx ½ million breast cancer
survivors living with breast
cancer
• Estimated to double by 2040
• Range of ongoing physical,
emotional, financial and social
needs post-treatment
• Long lasting effects of treatment
• Emotional impact of diagnosis
Survivorship needs of all patients
Fear of recurrence
and uncertainty
Changed
relationships,
role
& identity
Physical side effects
Altered body
image
Loss of
control
Isolation
Work & Finance
Loss of self
confidence
Our Moving
Forward
services and
information
are for anyone
living with and
beyond breast
cancer, helping
them approach
life after
treatment with
confidence
Information
Sessions
Lingerie
1:1 Peer
Support
Evenings
Moving
Forward
Course
Best Foot
Forward
Moving
Forward
Resource
Pack
Helpline/Ask
the Nurse
Younger
Women’s
Forum
Living
with SBC
Moving Forward courses
Breast Cancer Care in partnership with local hospitals across
Scotland, England and Wales
What is it?
3-4 week psycho-educational course (half day) covering up to 8 topics
chosen in partnership, for approx. 10-15 patients
Partnership hospital provides:
Venue, refreshments and speakers, promotes the course and refers
patients
Breast Cancer Care provides:
Trained facilitator, set up and admin support, course materials
quality monitoring, evaluation, signposting to other services
Research Gap
• What about women from ethnic minority
groups?
• What about socially disadvantaged women?
• Are their needs same or different?
• Large proportion of ethnic minority and
socially disadvantaged women not using
existing information and support services
• How can we best deliver services for them?
Patient Interviews
Phase 1 of research project: carried out in depth interviews with breast cancer
survivors from different ethnic backgrounds
Ethnicity
No of Women
White
23
Black African or Black Caribbean
21
South Asian (Indian, Pakistan, Other)
17
Other
5
Total
66
Cultural and familial
Influences
Poor
Knowledge
& awareness
of breast
cancer
PROWESS Study
(Promoting Recovery, Well-being & Equality in breast
cancer Survivorship)
PROWESS programme
• Supportive educational group based programme
• For women who have finished breast cancer
treatment
• Specifically aimed to be inclusive of women from
ethnic minority backgrounds
• Co-designed by breast cancer patients, health
care professionals and other experts
• Will be tested in South East London
Experience based co-design
- in general
Work with patients and experts delivering a service to capture and understand
people’s experiences in order to improve future experiences
Experience based co-design (EBCD) steps
Gather
experiences
from
patients and
staff
through indepth
interviewing
,
observation
s and group
discussions
Identify key
'touch
points'
(emotionally
significant
points)
Create a
short edited
film is from
the patient
interviews
Show film to
staff/stakeh
olders and
patients,
conveying
patient
experiences.
Bring staff /
stakeholders
and patients
together to
work in
groups to
identify and
design
activities
that will
improve the
service /
experience
Experience based co-design
- PROWESS
• Interviews (phase 1) with South Asian and Black
breast cancer survivors informed 2 short films
– One film of experiences of Black survivors and one of
South Asian survivors
– Actors used
• Separate films and workshops for Black and South
Asian groups to identify if need different courses
for different ethnic groups or one course adapted
to be more inclusive for everyone suitable
• December 2013: Workshops for needs specific for
Black African and Black Caribbean
Design Workshops
Short film presenting findings from
phase 1 produced using actors
Stakeholder feedback event:
- Film: raise issues and patients’ needs
- Overview of Breast Cancer Care’s support services
- Discussion: Providing group based support: possible challenges and solutions
Attended by 18
local hospital and
community staff
working with
black women
Design Workshops
Short film presenting findings from
phase 1 produced using actors
Black African / Black Caribbean patient focus group event:
- Film: raise issues and patients’ needs
- Overview of Breast Cancer Care’s support services
- Discussion: Providing group based support: possible challenges and solutions
Attended by 20
Black African and
Black Caribbean
breast cancer
survivors
Design Workshops
Short film presenting findings from
phase 1 produced using actors
BA / BC patient focus group event:
- Film: raise issues and patients’
needs
- Overview of Breast Cancer Care’s
support services
- Discussion: Providing group based
support: possible challenges and
solutions
Attended by 21
staff and 22 Black
breast cancer
survivors together
Stakeholder feedback event:
- Film: raise issues and patients’
needs
- Overview of Breast Cancer Care’s
support services
- Discussion: Providing group based
support: possible challenges and
solutions
BA / BC patient and stakeholder focus
group events to identify intervention content,
setting and delivery
Patient workshop attendee
demographics -I
Generational status
12
12
10
10
8
Number of attendees
Number of attendees
Ethnicity
6
4
8
6
4
2
2
0
Black
Black
Caribbean African
Black
Other
White
White
and Black and Black
Caribbean African
Mixed
Other
0
1st generation 2nd generation 3rd generation
not stated
Patient workshop attendee
demographics - II
Age
Time since treatment
8
10
9
7
8
Number of attendees
6
Frequency
5
4
3
7
6
5
4
3
2
2
1
1
0
0
Under 50
51-60
61-70
71+
not stated
0 – 12 months
13 – 24 months
> 24 months
Workshop findings – Moving
Forward content
• Adaptation suggestions to make ‘Moving
Forward’ content more culturally
appropriate and accessible for Black
African and Black Caribbean survivors
Adaptations to Moving Forward
‘Moving Forward’ content
Suggested additions and adaptations
Lymphoedema

Include advice on long distance travel to hot
countries as may travel to country of origin
Healthy Eating after breast cancer

Include culturally relevant African/ Caribbean
food and where to find healthy alternatives
Understanding breast cancer treatments and
managing side effects

Adjusting and adapting after a diagnosis

Include information on how to manage side
effects on black skin, nails and hair loss and
regrowth
Emphasise that ok to ask for help, as black
women may feel the need to be strong and
get through it by themselves
Include information on how to access group
and one-to-one counselling

Intimacy and relationships

Take account of different family contexts, e.g.
lone parents; taboo of talking about sex and
sexuality
Workshop findings – Target group
• Mixed views whether the survivorship selfmanagement intervention should be solely
for Black women. None would be put off
by a group for women from mixed
backgrounds, as long as their needs were
met.
Workshop findings – PROWESS
programme design
•
Additional content:
– Financial, benefit and employment advice
– Information for carers and family
– Information to challenge stigma associated with cancer
•
Cultural design elements:
– Using community facilitators and experts
– Culturally relevant healthcare/ educational materials
– Involving breast cancer survivors from different cultural backgrounds
•
•
•
Neutral community setting: with easy access
Importance of partnership working: Staff joining up expertise, resources
and working together considered best to take the design and delivery work
forward.
Varied facilitation methods:
– Including audio visual and talking and sharing activities
– Less reliance on non-didactic teaching
• Social interaction: Important as part of new group service will help
nurture and build peer support and time to share with other
breast cancer survivors.
PROWESS programme design
• Build on these discussions when codesigning PROWESS programme
• Too many changes suggested to be able
to adapt Moving Forward course
• Will be new course
• Not separate courses for different ethnic
groups but one course inclusive of women
from diverse ethnic and socio economic
backgrounds and their needs.
Next steps
• Started consulting South Asian women to
include their needs
• Forthcoming EBCD working groups: with
staff and survivors to further co-design and
develop the new course
Acknowledgments
Breast Cancer Care
Research and Development team
Karen Scanlon (Head)
Charlotte Tomkins
Services team
Programme Manager Patient Centred Care, Guys & St Thomas’s NHS Trust
Catherine Dale
King’s College London
Jo Armes
Emma Ream
Seeromanie Harding
All patients, stakeholders and NHS staff contributed
The Big Lottery Fund (funding)