Reducing Cancer Stigma in Serbian and Macedonian Communities
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Leissa Pitts - The Cancer Good News Project
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Reducing Cancer Stigma in Serbian and Macedonian Communities
- 2. CANCER GOOD NEWS PROJECT 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
- 3. 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
- 4. 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
- 5. 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
- 6. 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
- 7. 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)
- 8. Project Messages Good News Facts about cancer survival rates (to counter beliefs that cancer is always a death sentence)
- 9. 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”
- 10. Project Messages Good News Stories of screening, early detection and survival which provide evidence from within the community of screening and survival norms
- 11. Project Resources Multiple strategies utilised to address literacy and language barriers including: • Radio scripts (broadcast on local and national ethnic radio)
- 12. Project Resources • Community newsletters (print and downloadable from website) • Good News Tests, Facts and Stories
- 13. Project Resources • Interactive Power Point resources for use within bilingual health education seminars (downloadable)
- 14. 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
- 15. 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
- 16. 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%)
- 17. Evaluation:Impact “ I am not afraid anymore, I have learnt that it is important to have screening” “ It (the project) helps people to change their opinion about cancer treatment” “ Great idea. Destigmatises the disease and encourages open discussions in Macedonian community about cancer”
- 18. 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”
- 19. 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
- 20. 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
- 21. Partnerships Upstream • Creation of effective inter-agency partnerships to sustain and build on project activities • reorient services towards culturally competent practice • Potential scalability
- 22. 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
- 23. Thankyou This project was funded by the Cancer Institute NSW. Thankyou to the Macedonian and Serbian communities in the Illawarra. Questions?
- 24. CANCER GOOD NEWS PROJECT www.cancer-goodnews.com.au
Notas del editor
- Iterative research and consultation processes enabled the project resources and activities to be carefully tailored to the needs of the target audiences.
- Our research suggested that we needed to talk to a range of community members – young, educated, English speaking, and older community members less proficient in English with significant cultural barriers to discussing cancer generally and cancer screening specifically. Our strategy involved key messages on Good news Facts, Good news Tests and Good news stories – all focussed on breast and bowel cancer screening. Our strategy also involved, addressing beliefs about fate and destiny about cancer, the cancer screening provided and to clarify, in simple language, what these processes involve with access pathways in language. Significantly, we have included narratives from the Macedonian and Serbian communities that talk to the benefits of early screening and receiving treatment early in a diagnosis. The community members are volunteers from the community who nominated themselves to speak to the messages and perform a vital role as mentors who model a profoundly influential process of engagement with their own communities through their personal stories. So our strategy to reduce stigma regarding cancer started very early in our project and was born from a process of community consultation and engagement.
- All the resources developed promoted Good News messages. The first focus was Good News Facts with the purpose of discussing cancer as a diagnosis with potentially successful outcomes with early screening and treatment. We utilised plain language, symbols and language translations of these messages into Macedonian and Serbian to communicate with these communities the fact that people survive with a diagnosis of cancer and that it doesn’t have to mean a death sentence.
- We promoted the message of Cancer ‘Good News Tests” - that early screening, even when a person feels well, is the key to effective diagnosis and treatment. Mammograms and the FOBT Good News screening messages were developed firstly into plain English language with simple key messages and then onto into Macedonian and Serbian languages.
- The Cancer Good News program would not be effective without the benefit of real stories from actual community members in the Illawarra experiencing the journey of cancer screening, treatment and survival. Our Cancer Good News Story approach provides a community based approach that engages the natural assets of the community to empower and inform itself. The stories of our community members are enormously powerful, genuine and profound. Their courage to step over the line of cancer stigma to informant and advocate is enlivening and strong. There is enormous potential within these stories and the people that hold and share them to afford change of attitudes beliefs and perceptions of cancer outcomes in their communities. The scripts follow our themes of challenging misconceptions, the benefits of screening and tell a story of survival. The stories we have captured are true, lived experiences. Here is one from a Serbian community member who we call Anna, who tells her story through an English speaker……
- The radio performs an essential communication medium for many of culturally and linguistically diverse communities that have little or no proficiency of the English language and who may have poor first language literacy. The Cancer Good News Project is utilising a number of strategies to engage our communities with the benefits of Breast and Bowel Screening. WE have developed radio scripts in Macedonian and Serbian languages which will be aired on SBS and other local radio stations. WE will play one script for you – You will have a copy of the script in front of you on paper and we will play the script with a ‘photo movie’ to accompany the script. These scripts will also be placed on the Good News website. Please listen for two minutes.
- The content for the Cancer Good Newsletters were developed from the formative research We have also developed newsletters in English, Macedonian and Serbian languages which focus on our three Cancer Good news themes. These newsletters are on the Good News website and will be distributed through our Cancer Good News website and through brought dissemination across the Macedonian and Serbian community education activities and evening events. These newsletter were translated and extensively tested with community leaders and members, and host accurate up to date and relevant information for our target audience. They include Cancer Good News Facts, Test and most importantly stories within the newsletter specific to the target audience.
- The Cancer Good News Project is delivering community engagement strategies over the next year to ensure our Macedonian and Serbian community members in the Illawarra. A powerpoint has been developed fro each community based on the three Cancer Good News themes and narratives to promote the benefits of screening. The community events always have a cancer service provider and a multicultural health worker available to answer questions and facilitate discussions. The resource will be available on the Cancer Good news website.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.
- The Cancer Good News Website will host the suite of resources in English, Macedonian and Serbian and available to community members and service providers. The resources, such as the Cancer Good News newsletter, Good News radio scripts, community narratives and education resources are available on this central portal. As you have seen and heard, we have a number of resources for a diversity of needs wthin the community and those who work with them. We are also working with the local Cancer Care Services and Cancer Council to assist them to engage effectively with our culturally and linguistically diverse communities.