BREAKING THE VICIOUS CIRCLE. Dr. Andrew CANCER STIGMA. Ward 8B It starts and ends with you. Dr. Andrew

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1 . CANCER STIGMA Dr. Andrew 8B BREAKING THE VICIOUS CIRCLE Dr. Andrew Ward 8B It starts and ends with you

2 In many societies and cultures, the stigma and mystery that surround cancer is so great that the word cancer is rarely used and the disease is not talked about openly Claire Neal 2013

3 Newspaper obituaries

4 In a nutshell STIGMA SILENCE FEAR & IGNORANCE STIGMA Stigma breeds silence, which fuels the fear and ignorance that feeds the stigma. Breaking this vicious circle not only makes life easier for people with cancer, but can also change public attitudes towards prevention and early detection 4

5 Cancer stats kenya

6 The Big C being diagnosed with cancer leads some people to see you as less than the person you were; they may avoid you, or feel ill at ease with you, or even behave in a hurtful or discriminatory way. 6

7 What is cancer stigma? negative or undesirable perception of a person affected by cancer. Stigma can be internal it can affect self-perception of survivors, causing guilt, blame or shame. can also be enacted, causing discrimination, loss of employment or income, or social isolation. It can come from misinformation, lack of awareness and deeply-engrained myths.

8 Stigma is unfair & Toxic Already a difficult Dx to deal with Stigma is toxic makes cancer and cancer patients invisible stifling informed public discussion Breeds a cycle of fear and misinformation blocks attempts to raise awareness about avoidable cancer risks and the 8 importance of early detection.

9 Livestrong: Anti stigma campaign WHO healthcare providers, cancer survivors, organisational leaders and community members 10 countries WHY to learn more about cancer stigma and how it operates (Cancer Stigma and Silence Around the World: A LiveStrong report). 9

10 Conclusions Pervasive, existing across countries, cultures, and communities characterised by a set of feelings, attitudes and behaviours, that they have compiled into a universal stigma index that includes views such as: Treatment and support are useless for someone with cancer. "I would feel uncomfortable being friends with someone with cancer" "People can only blame themselves for getting cancer" "I would feel isolated/alone if I received treatment for cancer If my spouse had cancer, I would consider leaving him/her" 10

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12 What cancer does to people Cancers can affect a person in so many ways how they look how they feel their sexuality their ability to have children relationships with friends and family. THE SAD THINHG IS THAT NO ONE TALKS ABOUT IT. EVERYONE IS SO QUIET ABOUT IT 12

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15 The Fear for cancer is deeper than you thought 15

16 When they visit you in hospital? Constant looks of pity Overbearing gifts and foods of all kinds The prayers and 10 timers louder and longer But the medical fund drives yield nothing until you die. Poor suzzy, cancer is such a menace, I mean, just look at her Said suzzy s Aunt

17 Where does cancer come from? Uncertainty about how and why it develops is another factor. Cancer is less well understood, because it is so many different diseases. Often we don t know exactly what causes it, and this can lead to different interpretations of what brings it on. 17

18 My cancer - my fault In many communities it can be seen as the result of witchcraft, or a judgement from God,. Also attributed to stress, to having a negative mindset or to failing to take proper care of one s mind and body. Our research has shown that people often believe that people with cancer brought it on themselves, which again can be very stigmatising. 18

19 Stigma due to Strong Link with Smoking People with lung cancer blamed and/or blame themselves for their disease cancer/ 2/2/

20 Is it infectious? or runs in families shunned by friends and neighbours due to fear excluded from the community. Fears that it is hereditary can ruin the marriage chances of those with a mother or father known to have had cancer Have you asked if they have any cancers in their family?? si Guka yake alikuwa na leukemia, 20 kuna wengi my daughter

21 Diagnosis to door time intolerable strains on relationships leaves people with cancer even more isolated. Stories of men walking away from marriages when their wife gets cancer or vice versa seem to be common across the globe the concept of relationship-toxicity is now circulating among parts of the advocacy community as one of the common side-effects of cancer. 21

22 Negative beliefs No screening Negative beliefs - people reluctant to admit that they have cancer. deterred from seeking professional advice about worrying symptoms don't attend screening particularly if they are ill-informed about the value of picking up and treating cancers at an early stage. 22

23 Misinformation - myths - Late diagnosis stigma and misinformation often create a vicious circle. Stigmatised persons don t want to talk about it. This increases myths and false misconceptions about cancer 23

24 More similar than different Developed nations Africa less likely to blame Blame witches, gods etc witches, or even God, for Little to nil progress in their cancer cervical/breast cancers BUT STILL show a strong Fear/stigma and tendency to distrust misinformation is conventional medicine widespread and turn to unproven and often metastasizing faster than irrational therapies when awareness. cancer strikes. Breast /cervical good progress lung cancer still riddled with fear and stigma 24

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26 Myths and propaganda

27 It showed that perceptions that a diagnosis of lung cancer will inevitably result in death, and that cancer cannot be effectively treated, lead to: delays in taking symptoms to the doctor refusing recommended treatments and investigations. Patients believed they believed that treatment for lung cancer would likely be denied to smokers, or that they would be blamed for their disease, even if they didn t smoke. 27

28 Anti-tobacco & stigma I have less sympathy for people with lung cancer than people with other types of cancer. Evidence cited by the BMC Cancer study, meanwhile, indicates that some people with lung cancer see information campaigns on tobacco as contributing to fatalistic views, as they focused on death rather than treatment and that they feel the press reinforces the smoking-related stigma. 28

29 BREAKING THE CIRCLE

30 Break the silence..talk about it..tell your story The LiveStrong foundation recently completed two pilot anti-stigma campaigns one in South Africa and one in Mexico ¼ - learnt something new ¼ felt more openly about cancer 2/5 made health decisions The problem is they never go for check-ups because they are afraid of learning they have cancer." 30

31 Change peoples opinions Forget the sad stories all the time.death death and more dying Where are the survivors? Get as many of them.all different kinds from all corners and social standing And get them talking. The idea was that, if they got together to speak out, they could help reduce the fear, break the silence and give different information through different approaches.

32 TV/Media campaigns

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34 Social Media campaign Two- to three-minute videos in which survivors from all ages and backgrounds gave their stories were uploaded onto the Share your Stories Facebook page. The site soon became a forum where survivors were able to interact with one another and upload their own videos. By the end of the campaign, the page was getting almost 900,000 visits per month. 34

35 Mobile screening 35

36 Oncology health care professionals attitudes to cancer: a professional concern Regardless of gender, profession and clinical experience, all health care professionals display persistently negative attitudes towards cancer. Need for radical change in the attitude of health care professionals towards cancer -to provide optimal care for this clinical population. Changing these attitudes presents oncology health care professionals with a challenge that can no longer be ignored. N Kerney, M Miller et al, Annals of Oncology 14: 57 61, 2003

37 How to stamp out Stigma: Few suggestions Health care professional Diagnosis and disclosure Information needs Support Raising awareness Patient Reduce stigma to yourself Share with those you trust Read about others Expose frauds- Jicho Pevu

38 AIDS/HIV Stigma Experience and Implications for Cancer Stigma HIV/AIDS Stigma driven by Transmissibility - It can spread from person to person It affects unpopular groups and people tend to hold those groups responsible for getting the disease When first discovered, it was untreatable and invariably fatal Perhaps the single biggest intervention against HIV stigma has been the widely publicised advances in HIV treatment. Stigma Against Cancer Likely to be Greater When: Perceived as severe and untreatable Person is perceived as being responsible for their condition (e.g., smokers) Cancer Screening resulting in improved survivability is key opportunity to fight stigma Wayne T. Steward, Stigma Against Lung Cancer: What Can We Learn From Research on HIV/AIDS (Presentation given at National Lung Cancer Partnership Lung Cancer Advocate Summit, September 20, 2013). 2/2/

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40 LUNG CANCER (LC) STIGMA CONCEPTUAL MODEL obacco Control Policies Stigmatized smokers Adverse LC patient impacts Reduced LC Advocacy Decreased Smoking Prevalence Increased LC Stigma Reduced LC Research Reduced LC Incidence Low Survivability Tobacco control policies effective at decreasing smoking prevalence however stigmatized smokers and people with lung cancer. Reduction in incidence of lung cancer offset by low survivability due to stigma resulting in negatively reinforcing loops of increased stigma, adverse patient impacts, less advocacy and reduced research. 2/2/2015 Andrea Borondy Kitts April

41 Public Health Policy Implications Improve lung cancer survivability via USPSTF recommended low dose CT (LDCT) lung cancer screening. Improved survival leads to positively reinforcing loops of reduced stigma, increased advocacy, increased research, increased survival Need CMS to cover LDCT lung cancer screening. Continuation of tobacco control policies should add lung cancer screening as a teachable moment for smoking cessation. Also, switch focus from negative portrayal of smokers and focus on tobacco and e-cigarette industry actions targeting addiction & marketing to youths 41 2/2/2015

42 Claire Neal, LiveStrong anti-stigma campaign Challenging stigma is a key that opens a lot of doors across the entire cancer control continuum. In our experience, if you can remove that barrier you can increase access to services and increase effectiveness of health promotion messages.

43 #KESHO Lets talk about cancer 43

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47 As we celebrate world cancer day.. Lets no longer fear this disease lets shun away cancer related myths It is time to embrace it talk about it..yes all the time More and more and more screening More advocacy More research. improved survivability & outcomes 47

48 THE END 48