Unmask Stigma Report

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2015 Report

Unmask Stigma , an international awareness and education campaign, aims to
• unmask (expose the true character or hidden truth) about the
• stigma (a set of negative and often unfair beliefs about a particular circumstance, quality or person)
surrounding tuberculosis.
Outline of Report:

 

The motivation for the campaign was based on personal experiences of health care workers and TB sufferers faced with different scenarios relating to stigma .

To give a few examples of stigma:

• A medical student wrote to TB Proof questioning the sense of complacency that reigns in academic hospitals fuelled by unintentional, yet deeply pervasive stigma:
“The attitude of doctors and nurses towards wearing masks and taking precautions when dealing with patients with such disease is uncomfortably relaxed. If one does wear an N95 mask you are glared at by nurses and doctors alike…Why do we knowingly expose ourselves and our colleagues to this deadly disease?”
• A retired nurse commented in response to a story of a doctor that contracted MDR TB:
“I worked as a nurse in the ‘public sector’ for 52 years with very severe TB cases, and I only know of one of my colleagues that contracted TB… What was the reason that this doctor’s resistance was so low? People working in health care should know how to look after their own health through good life style habits.”

Comments and attitudes like these prevent health care workers from wearing masks and protecting themselves as they do want to seem “weak”, “unhealthy” or not “strong”.

• A man from Pakistan rejected by his family after he got TB and told he will never find a wife because of TB.
• A young doctor loses her hearing after her physician ignored her concerns, telling her that her hearing loss was imagined.
• A woman walks to the other side of town every day to avoid people from her local neighbourhood seeing her receiving TB treatment.
• A nurse in London frustrated that her two Asian patients of the same cultural background refuse to be introduced to each other for emotional support, because of their fear of stigmatization.
• A doctor from Malaysia sent an email to TB Proof in desperation and isolation, asking, why did she get XDR TB? What did she do wrong?

Such accounts motivated the TB Proof community to start fighting the stigma! By revealing and subsequently addressing stigma we encourage health care workers to protect themselves. We also encourage TB patients not to be ashamed after contracting this disease, or about having to wear masks to protect others, and to be proud of surviving TB. By sharing TB survivors’ stories, we believe we can encourage patients to complete their treatment and live normal lives after being cured from TB.
2. Summary of the Initiative

Background

South Africa (SA) has the third-highest tuberculosis (TB) incidence rate in the world with a high HIV/TB co-infection rate and a large drug-resistant TB burden. Treatment success rate was only 77% in 2013 and TB remains the leading cause of death since 2007. Prevailing TB stigma is a major contributor to diagnostic delay and treatment interruption. Although TB-related stigma is well documented, few interventions have been attempted to address stigma in vulnerable populations.

Intervention

The Unmask Stigma Initiative was launched in 2014 with the support of Dr Mario Raviglione, head of the World Health Organization’s (WHO) Global TB Programme. This initiative aims to address TB stigma in communities through education, sharing of personal stories and social mobilization by engaging the public to show unity with patients. The intention is to effect change in society’s perception of vulnerable groups affected by TB, including health care workers and people living with HIV.
Since 2014, collaborations were formed with 6 global and 5 local advocacy groups, 2 foreign and 5 local universities, 3 local non-profit organizations, 8 hospitals and 4 clinics. A website was created with written and video messaging reviewed by a WHO ethics expert. Advocacy materials were designed and distributed to partners, including pamphlets on TB symptoms, prevention and stigma. Surgical masks are worn by people with active TB to prevent droplet spread. Participants were asked to post a picture of them wearing a mask on social media on world TB day to show solidarity with patients. Several short-films were developed in collaboration with partners about local TB survivors and shown on 16 platforms.

Results

Since 2014, 25622 masks, 20505 stickers and 9360 pamphlets were distributed and 115 posters were displayed in various locations. Presentations which encouraged participation in the initiative reached approximately 2500 people with an additional social media reach of more than 31 000 through an email list serve, Facebook, Twitter and Instagram. Print, radio and national television media engagement lead to further reach of the initiative.

Conclusion

Society acknowledges the harmful effect of TB stigma in communities and is willing to take part in activities that dispel false beliefs and attitudes towards patients. Social media platforms offer exciting opportunities to engage and promote activism and awareness. There is further scope for studies on the impact of anti-stigma interventions.

3. Activities leading up to World TB Day:

a. Unmask Stigma at Breathe Umphefumlo Premier, March 23

 

 

#ZeroStigma
#ZeroStigma

 

Breathe Umphefumlo is a modern adaptation of Giacomo Puccini’s opera La Boheme, in which the main character dies of TB. The film, which earned rave reviews during the recent Berlin Film Festival, is a collaboration between the Isango Ensemble, the Desmond Tutu TB Centre, Stellenbosch University and the Desmond & Leah Tutu Legacy Foundation. TB Proof arranged a display of the Unmask Stigma Initiative in the ‘Neelsie’ (student centre where the film premier was shown). TB Proof members Dalene von Delft and Phumeza Tisile had the opportunity to meet and speak with Desmond Tutu at the premier. He was eager to support the Unmask Stigma Campaign, and posed for photos with a ZERO stigma mask on for various media present. His family also posted various photos on social media wearing Zero Stigma masks.
The evening was covered by the SABC (South African Broadcasting Corporation) News and broadcasted to the whole nation in several official languages.
Desmond Tutu

 

 

 

 

 

 

b. Unmask Stigma at Stellenbosch University Tygerberg Campus
Tygerberg Marketing office.
During world TB month, the Health faculty’s marketing office featured stories on the topic of TB and student TB survivor Melissa Kerspuy did an excellent interview of story published on World TB day; TB Proof members Dalene von Delft and Angela Dramowski.
As mentioned in the article, TB Proof initiated and contributed to the development of student TB guidelines in consultation with Campus Health Services, Faculty management, Health Science students, Occupational Health experts and the Unit for Infection Prevention and Control.
Planning prior to world TB day
The Tygerberg Academic Affairs Council, consisting of the class representatives, helped to notify the students on campus prior to the day.

The council helped to invite students to the Facebook event that was created, which reached 409 students.
They also posted the flyer in their class Facebook and WhatsApp groups prior to the day.
All class representatives received a Power-point slideshow developed by TB Proof which they presented in the various classes on the day. They also played a short film telling the story of a UCT medical student who contracted spinal TB. This short film was developed by TB Proof in collaboration with Visual Epidemiology (produced, filmed and edited) and AERAS (sponsor). Permission for the distribution of the film was granted by AERAS.
On 23 March, TB activist Phumeza Tisile visited Tygerberg campus and spoke to a group of students about her journey with XDR TB, losing her hearing as a result of the treatment, and then receiving cochlear implants. This talk was filmed by Carte Blanche (a television documentary show). Students were very excited and all wanted to take pictures with Phumeza.
c. Educational Sessions at various hospitals where there initiative was presented
2 Military Hospital, 9 and 10 March

University of Cape Town 3rd year medical students, 10 March

also filmed by eNCA (eNews Channel Africa)
Tygerberg Hospital Interns, 11 March

Tygerberg Campus Speech and Hearing students, 13 March

d. Stellenbosch Gemeente (Community)
Stellenbosch Gemeente – TB Proof had 2 presentations during sermons on 22 March. Masks and stickers were handed out to the community that included young children and university students. During the praise and worship session the band advertised the initiative.

4. Activities on World TB day:
a. International:

The Centre for Global Health and Diplomacy (GHD), USAID/RESULTS, Washington DC
Kedibone Mdolo, TB survivor and advocate, presented the Unmask Stigma Campaign at the GHD World TB Day Special Event.
She also took part in advocacy events organized by RESULTS USA.
as well as presented the initiative at the Vanderbilt TB Centre: World TB Day Event.

The National Tuberculosis Controllers Association (NTCA)
The NTCA is a United States based organization with the vision of a world free of TB. Their mission is to protect the public’s health by advancing the elimination of tuberculosis in the U.S. through the concerted action of state, local, and territorial programs. Since 2014, Director Donna Wegener has been a supporter of the global Unmask Stigma initiative. This year they continued their support.

Unmask Stigma at Stellenbosch University Tygerberg Campus
N95 Respirators were handed out at the entry gates of the medical campus, students posted “selfies” (pictures) of themselves on the Facebook page and the Dean’s office showed their support by also wearing their masks and posting their photos on Facebook and twitter.
Through the class representatives, masks and stickers were also distributed to the various classes on world TB day. A presentation of the initiative was shown including the short film about a student TB survivor. Students were encouraged to take class photos and submit it, and then to use the masks during the day and post an entry to the #UnmaskStigma challenge by posting on social media.
A total of 1740 masks were handed out in classes through class representatives.

Other sites on Tygerberg campus where masks were available

Masks and stickers with information pamphlets were also available at the two coffee shops on campus, Cups & Saucers and Torrador, as well as in the cafeteria over lunch. An additional estimated 200 masks and 150 #UnmaskStigma challenge pamphlets and 100 pamphlets on occupational TB were distributed.

Tygerberg hospital
In Tygerberg hospital, on world TB day, patient information pamphlets were placed at all of the entrances and on the counters of the tuck shops, and were handed out in the clinics as well as the pharmacy. An estimated 400 pamphlets were distributed.

Unmask Stigma at Stellenbosch University Main Campus
Stellenbosch University Main Campus – Students wore their masks on main campus and posted their “selfies” on Facebook and Twitter. Flyers were available at Campus Health and there was a poster presentation in the ‘Neelsie’ Student Centre. Residential houses Nerina and Aristea also raised awareness by handing out masks and stickers.

Unmask Stigma at the University of Cape Town
TB Proof members from UCT organized a display and table stand at the Medical School in order to create TB awareness and to Unmask Stigma. Surgical masks were handed out to students as a way to show solidarity with TB sufferers. During lunch time people wore their masks while they relaxed in-between classes.
Unmask Stigma at Worcester Hospital
The day kicked off with the staff and students of the Worcester Rural Clinical School campaigning for unmasking the stigma regarding tuberculosis. Everyone wore Unmask Stigma masks and carried posters; the security guards at the hospital were also enthusiastic and agreed to hand out pamphlets regarding TB transmission and IPC (Infection Prevention and Control), as well as Unmask Stigma masks, to all staff and patients entering the hospital premises. The excitement was raised with the incentive of prize money for the most creative photos taken with the masks on – anybody could participate. The buzz reached the media and the local newspaper (the Worcester Standard) came to capture the excitement.
Within the walls of the hospital, the message was spreading fast. There was an informal competition among the different wards with regards to representation of TB – posters and creative displays were produced, staff wore black and red outfits and patients were given special parcels that contained a small pack of tissues and TB information, among others, to commemorate the day.
At the Rural Clinical School, a presentation by TB Proof was given to staff and students. This was a great platform for communication and interaction, and there was useful exchange of ideas and thoughts. The staff made it their mission to spread the message of TB and unmasking stigma, to all persons entering the Rural Clinical School premises; they went further to even take pamphlets and posters home to spread the message within their neighbourhoods.
University of Johannesburg
The Witkoppen Community advisory held an awareness campaign at University of Johannesburg where they distributed the #UnmaskStigma stickers and masks to the students on campus to create awareness around TB and the stigma associated with it.
National Department of Health 2015 World TB Day commemoration in Kanana, North West Province.
TB Proof member, Dr. Thato Mosidi was invited to speak about her experience as a patient and she clearly addressed the prevalence of TB stigma in the community, calling for everyone to be tested for TB and imploring patients to complete medication, if on treatment already. As part of World Tuberculosis (TB) Day commemorations, Deputy President, Cyril Ramaphosa, and Health Minister, Aaron Motsoaledi, were present at this event. Jacques Lloyd, the Disabilities Sector representative from SANAC (South African National AIDS Council) also handed out ZERO stigma masks to support the initiative at the event.

USAID Southern Africa Mission Director, Cheryl L. Anderson, was present at the event and also wrote an online report, featuring a photo with Dr Thato Mosidi.

Cape Town March
TB Proof joined the march of over 5000 people through the CBD to parliament in Cape Town. Masks, flyers and posters were handed out. Phumeza Tisile was one of the speakers and proudly announced the Unmask Stigma initiative.

eNCA news coverage of the event included  interview with Phumeza Tisile.

Kroonvale Clinic, Graaff Reinet
A great collaboration with Mr. JP Voigt, Environmental Health Control Officer, was formed. They organized an event on world TB day where more than 100 people actively participated. TB Proof sponsored the day with IEC materials (information, education & communication) e.g. posters, stickers, pamphlets and also masks. The Unmask Stigma message was spread with various guest speakers including a former patient, and people encouraged to screen for TB. After the event, testing of TB, HIV/ Aids (HCT) and diabetes was done at four tables. Out of twenty clients that were screened for TB, one tested positive.
University of KwaZulu Natal
Unmask Stigma posters were displayed around the School and a Power Point on the safe use of masks with a link to a short film about a student that contracted TB.  A well-attended staff function was arranged by their SHE Unit to raise awareness and discuss how to recognize symptoms that should be investigated.
Paul Roos Gymnasium
The life orientation teacher placed posters in the school and focused on TB and stigma during the life orientation period. He also handed out masks and zero stigma stickers to the students.
Medi Cross and Roelien Mostert Physiotherapy, Stellenbosch
Posters, masks and stickers were distributed on world TB day to raise awareness among patients.
Vergelegen Medi-Clinic
Doctors and Nurses in the Emergency Centre wore Zero Stigma masks in solidarity with TB patients.
Huis Marie Louw
An information session about TB, signs, symptoms and stigma was given by Nurse Pat Bond to the residents and staff members of this assisted living and retirement home.
Somerset West Library

A poster presentation with masks, stickers and flyers were placed in the Somerset West Library to educate people, especially parents with children on TB and stigma.
Janssen Pharmaceuticals world TB day presentation.
Dalene von Delft gave a presentation of stories of patients affected by drug-resistant TB and talked about the Unmask Stigma campaign. The staff had opportunity to ask questions to patient survivors present that included two XDR TB survivors and 2 MDR TB survivors.
THINK (TB and HIV Investigative Network)
THINK is a research consortium that engages with the local community, government consortia, international researchers and the pharmaceutical industry to develop vaccines, new diagnostic tools and treatment regimens to improve the health of those affected with TB and HIV, based in KwaZulu Natal in South Africa.
TB Proof formed a collaboration with them and they were eager to join Unmask Stigma activities.
On world TB day, 200 masks and stickers were divided between the Durban and Pietermaritzburg THINK sites.
The Durban site used the materials for the Schools Speech Competition as well as the launch of
the Ethekwini HIV/AIDS Women’s Sector Launch. The Pietermaritzburg site used the stickers and masks for their World TB Day event, at a Research Literacy Day for nurses in the Msunduzi District and a TB awareness day at KwaDambuza. For the world TB day, THINK staff also collaborated with Doris Goodwin TB hospital (where the Clinical Trials Unit is situated and MDR patients are treated and admitted for in-patient care) for a Health Day where screening services were provided. Online report of activities here.
Johannesburg Involvement
The templates for the stickers were emailed to the Emergency Department rooms of Drs Monteith, Wells, Nay and Heyman Inc for involvement for world TB day. The unit provided their own masks, several of which made their way to a spinning class at Melrose Arch Virgin Active
Classic. Some of the masks only stayed on for a few minutes with some of the people exclaiming that it was difficult to ‘breathe’ and ‘exercise’ whilst wearing the mask. ‘Imagine running for the bus or taxi with this on!’ was another comment. Some of the doctors and the admin staff participated in the event. Needless to say, one of the participants acquitted herself to spend the day wearing a mask, challenging others to spend ‘a day in the mask’ of a TB patient. It was successful, not only for achieving the set goal – but also for realising and considering for the first time what it feels like to be a TB patient.
The response to group photos or ‘selfies’ showing solidarity with TB patients who have to wear
masks was a resounding success – participants generally jumped at the chance to share the
photo on their choice of social media. Facebook was the preferred method for ‘sharing’ all
round. The power-point slideshow sharing knowledge about infection control and the significance of wearing a mask was worthwhile at events where an AV setup was possible.
A pitfall was at the community events in the field where there were no opportunity to share the slides. However, it did not exclude information from being shared – it just proved to be a challenge as the turnover of people and the nature of an event such as a ‘health day’ means that the onus is on the staff to explain to each participant about the Unmask Stigma Campaign.

5. Activities after World TB day:
Cape Town Jazz Festival, March 27
DR TB survivors Phumeza Tisile and Zolelwa Sifumba met with legendary performer Yvonne Chaka Chaka, UNICEF Goodwill Ambassador, and raised awareness about TB and stigma at a press conference where more than forty journalists attended. The entertainer was interested and passionate about the Unmask Stigma campaign and TB patients’ plight.

AHLAD (The Association for Hearing Loss Accessibility & Development)
AHLAD invited TB Proof to a morning event where we shared our stories as well as information about hearing loss in TB patients. There was a great response to our stories. Dr Beth Engelbrecht, head of the Western Cape Department of Health, was present at the event and conveyed that she was very impressed with our work. We talked about the Unmask Stigma campaign and people were keen to get involved and pose for pictures. .
Educational Sessions after World TB Day where the initiative was shared
25 March, Red Cross War Memorial Children’s Hospital Staff

As well as ICU Nursing staff on 14 April..
15 April Stellenbosch University Dietician Students at Tygerberg Campus

16 April Stellenbosch University Occupational Therapy students at Tygerberg Campus

THINK
On 8 May THINK used Unmask Stigma materials at an International Candlelight Memorial Service at Durban University of Technology, an initiative involving the taxi ranks in the Msunduzi districts and as well as at a Research Literacy Event for nurses in the Ethekwini district. They continue to use the Unmask Stigma materials in the clinics in which they recruit patients for their trials as they feel it would be a way of ‘giving back to the community’ with valuable knowledge.
6. Social Media Photo Competition/the Unmask Stigma Challenge:
Surgical masks are worn by people with active TB to prevent droplet spread. To encourage students to get creatively involved TB Proof initiated a photo competition. Participants were asked to post a picture of them wearing a mask on social media on world TB day to show solidarity with patients. The Competition was advertised through social media channels, email distribution, presentations at meetings and the handing out of flyers and posters. The winners were chosen carefully through a selection process and offered cash prices.

 

7. Funding and supplies:
Capital for Good provided funding for all information, education and communication materials that included design and printing of posters, pamphlets (flyers) and stickers and funding for surgical masks.
In 2015, a total of 9772 masks were distributed, 9973 stickers were used, 3200 Unmask Stigma flyers were distributed, 2700 Public flyers that included TB information and 3460 flyers on TB in health care workers were distributed among students and health staff.
Rigid Unmask Stigma posters (67) were used during marches and for displays, 6 posters were used for advertisement of the challenge, and 2 posters in how health care workers can protect themselves in the workplace were distributed.
8. Media Engagement:
a. Newspapers
Helderberg Gazette
The Helderberg Gazette is a local newspaper that is distributed free of charge in Somerset West, Strand, Gordon’s Bay, Macassar, Firgrove, Sir Lowry’s Pass Villiage, Rusthof, Southfork, Lwandle and Nomzamo every Tuesday. Circulation reach is estimated at 31 450 people and readership 87 000. The Unmask Stigma campaign featured on the front page and page 2 of the newspaper.
Bolander
The Bolander is a free newspaper distributed in Somerset West, Gordon’s Bay, Strand, Stellenbosch, Paarl, Wellington and Franschhoek and has a weekly distribution of 30 000 copies. An article about the Unmask Stigma campaign written by Andrea von Delft.
Worcester Standard
The Worcester Standards is a local newspaper distributed to 89 000 readers in Worcester, McGregor, Bonnievale, Robertson, Touwsrivier, Ceres en Villiersdorp. They did an article about the Unmask Stigma initiative on world TB day.
b. Journals
International Journal of Infectious Disease Special edition on World TB Day 2015
“Why healthcare workers are sick of TB” Pages 147-151
TB Proof members wrote an article about the stigma that health care workers that contract tuberculosis have to face. They collaborated with international leaders in the tuberculosis field to contribute to this article.
“Access to new medications for the treatment of drug resistant tuberculosis” Pages 56-60
TB Proof members were invited to contribute their personal stories to this article that was also published on world TB day.
HIV Nursing Matters Vol.6 No. 1 pg 40-41
“Healthcare workers need to protect their own health too”. Page 40
TB Proof member Dr Thato Mosidi speaks out about being diagnosed with XDR TB and about TB in Healthcare workers and the associated stigma that she experienced.
“End stigmatizing language in tuberculosis research and practice”
TB Proof contributed to this article about harmful terminology in the tuberculosis research field. Terms that invoke metaphors of transgression and punishment cause harm, leads to stigma and shame for TB patients.
c. Television
SABC (South African Broadcasting Channel) News
See above references related to events that were captured on national television.
Reach: National exposure in several official languages, with Desmond Tutu and the Unmask Stigma Campaign as well as coverage of the Cape Town march and the National event in Kanana.

In an interview with SABC News, TB Proof member, Dr. Thato Mosidi, discussed her experience as patient and created awareness about Drug Resistant TB in the country. The program was aired on Friday 3 April on Channel Africa during the current affairs program “Africa rise and shine” and later on “Africa Midday”.
e. Online Reports
SABC Online
Online SABC Report of Deputy President’s Speech and link to Morning live news showing Unmask Stigma display.
Eye Witness News
Report on the Cape Town March.
USAID
USAID Southern Africa Mission Director, Cheryl L. Anderson, was present at the National event in Kanana and wrote an online report, featuring a photo with Dr Thato Mosidi:

Health-e
Article about National event on World TB day in Kanana and launch of new screening programme including an interview with Dr Thato Mosidi.

THINK
Online report of activities mentioning participation in Unmask Stigma Initiative

SUN Media releases:
“Students not immune to TB” Author Wilma Stassen, Interview with Melissa Kerspuy, Dalene von Delft and Angela Dramowski.

“World TB day 2015 at Stellenbosch: Maties become Agents of Change for TB Prevention” Featuring Podcast by Angela Dramowski, links to films of TB Proof members and educational film from TB Proof.
Also advertised on Impromptu:

Chevslife
An online blog posted a section on Phumeza Tisile and Dalene von Delft after they heard our presentation at the morning event arranged by AHLAD. Chevslife

Thisability
A Disability Awareness Newspaper wrote an article about Phumeza Tisile and Dalene von Delft after their presentations at the morning event arranged by AHLAD
Thisability (Volume 4, Issue 1, Feb-March 2015, page 8)
TB& Me Blog by MSF
“World TB day 2015: Stigma!” TB & Me, MSF, Blog by Zolelwa Sifumba about the Unmask Stigma campaign.

f. Social Media Reach
@UnmaskStigma Twitter
Total Impressions for 2015 up until April 30th: 5625
Unmask Stigma Facebook
Total posts reach for 2015 up until April 30th: 11080
Total Impressions for 2015 up until April 30th: 24596
Further social media reach was achieved on TB Proof‘s Twitter and Facebook pages.
9. Conclusion

Society acknowledges the harmful effect of TB stigma in communities and is willing to take part in activities that dispel false beliefs and attitudes towards patients. Social media platforms offer exciting opportunities to engage and promote activism and awareness. There is further scope for studies on the impact of anti-stigma interventions.

The success of the 2015 campaign can be attributed to great collaborations forms with partners and hard work from volunteers. Capitalizing on events where there were a lot of media present also contributed to the public reach of the initiative at minimal cost.

We would like to thank our sponsors, Capital for Good, and all our partners and volunteers for the hard work that they put into the 2015 Unmask Stigma Initiative!

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