CANCER GOOD NEWSPROJECT

Addressing cancer stigma &

promoting help-seeking within

Serbian & Macedonian

communities of the Illawarra

Cancer Institute NSW

Innovations in Cancer Treatment and

Care Conference

17th October 2014

Background

CALD communities:• strongly associate cancer with certain death and fatalism• experience cancer related stigma, myths and cultural

taboos that prevent open discussion of cancer • contributes to low attendance for screening and delays in

help-seeking

Formative Research

Ongoing consultation with panels of community members. Panels tested project resources at various points for;

• content• readability (i.e. use of plain language) • cultural appropriateness

8 Focus Groups

2 Community

Panels

69 male and female Serbian and Macedonian community members (20-81 years)

• explored beliefs and attitudes about cancer• the nature of cancer related stigma and

myths • cancer screening knowledge and

behaviours

Formative Research

Results• Cancer was feared, and for many was linked with death,

not with treatments or cures.• Some people knew about some of the causes of cancer,

whilst others believed cancer occurs as a result of bad luck, fate or destiny and that little can be done to prevent it

• For many in the community cancer was a difficult and uncomfortable subject to talk about

Cancer Good News Project

• Aims to reduce cancer stigma & promote screening to improve cancer outcomes

• Program developed in partnership with the Serbian and Macedonian communities of the Illawarra

• Resources emphasise Good News Facts, Tests and Stories (breast and bowel cancer)• Address beliefs about fate and destiny• Describe tests and address misinformation• Promote access to services • Provide community endorsement &

modelling

Project Goals

• Reduce stigma and taboo

- increase community discussion about cancer

- promote positive survival & screening stories

• Promote positive attitudes towards screening and cancer treatment outcomes and promote screening intentions (downstream)

• Engage community champions and story-tellers(mid stream)

• Increase community capacity to address the issue at a local level (mid stream)

• Increase capacity & build partnerships to assist with culturally competent practice within local cancer services (upstream)

Project Messages

Good News Facts about cancer survival rates (to counter beliefs that cancer is always a death sentence)

Project Messages

Good News Tests Promotion of mammogram and Faecal Occult Blood Test as a means of detecting cancer earlier and improving survival rates

“ A mammogram saved

my life. And I think that everyone has to go to have a mammogram.

Especially after 50”

Project Messages

Good News Stories of screening, early detection and survival which provide evidence from within the community of screening and survival norms

Project Resources

Multiple strategies utilised to address literacy and language barriers including:

• Radio scripts (broadcast on local and national ethnic radio)

Project Resources

• Community newsletters (print and downloadable from website)

• Good News Tests, Facts and Stories

Project Resources

• Interactive Power Point resources for use within bilingual health education seminars (downloadable)

Project Resources

• Project website (multilingual) - promotion and distribution of all project resources

• Includes audio of cancer screening and survival stories• Animation and audio of radio scripts• Downloadable newsletters and powerpoints

www.cancer-goodnews.com.au

Evaluation:Reach

Phase 1 Breast Cancer• 7,000 breast cancer newsletters disseminated • 391 local participants in community

research/forums/events• 23 community members shared stories or photos

for resources • 317 website visits • 4 months extensive airplay of breast cancer radio

messages on local ethnic radio

Evaluation:Relevance

Information/facts about breast cancer:

- grabbed my attention (89%)- was relevant to me and my family (91%)- was convincing (93%)

Screening Stories of community members:

- were relevant to me and my family(93%) - were convincing (96%)

Evaluation:Impact

“ I am not afraid anymore,

I have learnt that it is important to have

screening”

“ Great idea. Destigmatises the disease and encourages open discussions in Macedonian

community about cancer”

“ It (the project) helps people to

change their opinion about

cancer treatment”

Evaluation:Impact

“ I have learnt that early screening is very important.

The good news is very encouraging, about the

success rate in treatment”

“ it is so good to talk about it”

“ we have a good understanding about treatment and screening”

Evaluation: Impact

Phase 1 Breast Cancer Good News. Survey (n=114)• 93% agreed that the Good news stories and information

about screening had promoted discussion about cancer with family or friends

• Agreement that Mammogram is important - to reduce the risk of dying from breast cancer (92%)- to detect breast cancer early (93%)

• Agreement that ‘I know how and where mammograms can be accessed’ (95%)

• 51% of women who had never had a mammogram, were very likely or likely to have one within the next 3 months

PHASE 2 – Bowel Cancer Good News - Jul – Sept 2014

Community Capacity

Midstream

• 23 community members shared stories or photos for resources

• Improved capacity & confidence of bicultural workers to promote cancer screening within communities where discussion had been taboo

• Resources available for continued promotion and utilisation in future events

• Emerging community champions/advocates- Planned Pink Ribbon Day 2014

• Involvement of community champions & leaders in advocacy with CINSW

Partnerships

Upstream • Creation of effective inter-agency partnerships to sustain

and build on project activities• reorient services towards culturally competent practice• Potential scalability

Lessons Learned

• Partnerships developed early in the project underpinned project success (UOW, Multicultural Health Services, Cancer Council

NSW and Cancer Care Services)

• Involvement of local bi-cultural health workers critical for community engagement and insight

• Importance of community role models and leaders for effective dissemination and support of key messages

• Emphasis on participatory research enabled; - improved community engagement- cultural tailoring of resources for audience segments - community ownership of project

Thankyou

This project was funded by the Cancer Institute NSW.

Thankyou to the Macedonian and Serbian communities in the Illawarra.

Questions?

CANCER GOOD NEWSPROJECT

www.cancer-goodnews.com.au