A Goldsmiths, University of London graduate has received a grant of $60,000 (£38,820) to build on her work engaging with, and empowering, Haitian women with breast cancer to communicate with their communities about the disease.
Changing governments, years of earthquake recovery, and a lack of both resources and expertise mean that thousands of people, notably women, die from cancer every year in Haiti after going without treatment.
In 2014 Grace Tillyard, who recently graduated with an MA Global Media and Transnational Communications from the Department of Media and Communications, was working with the World Food Programme in Haiti when she met the head of the NGO Project Medishare’s Women’s Cancer Programme, Dr Vince DeGennaro.
In discussions with medical practitioners in the country, she learned that a major problem in cancer care is that women only visit a doctor when their disease is so advanced that they are beyond help. Chemotherapy and surgical interventions at this point are drastically less effective.
After taking a Methods and Processes of Innovation module in the Department of Design at Goldsmiths, Grace was introduced to new approaches to engaging with, researching, and understanding an audience. This learning contributed toward her work with Project Medishare in Haiti in co-creating a campaign to sensitise whole communities to the causes and effects of cancer.
“Who do women communicate with about feeling ill? Who takes them to hospital? How do they talk about the disease? What do men think and how do they participate?” asks Grace, explaining that she wanted to move away from “baselines and means” toward an understanding about motivation and feeling. “Equally importantly, we want to engage people to make sure they see a doctor if they think they’re ill and encourage them to follow the treatment programme.”
Exploring narratives and new communication approaches
Back in Haiti, Grace mapped out a woman’s journey through the diagnosis and treatment process, refining and revising it with the help of breast cancer survivor and Haitian support group leader Gerty Surena. Gerty and Grace discussed the social parameters of a person’s life that would be most useful to explore together and drew them up on a large card.
In a small focus group of eleven women, the narratives of each person in the room were explored, with each participant creating a ‘StoryCube’ which could be positioned on the card in relation to particular issues. StoryCubes™ are a three-dimensional tactile tool designed by Proboscis, an independent artist-led creative studio directed by Giles Lane and Alice Angus. In the workshop they helped illustrate and visualise different narratives around cancer at its different stages, how women experience the disease emotionally and the way that different stages of the disease are socialised.
“The session was not about diagnosing problems to allow me to come up with solutions,” explained Grace in her project report. “It was about exploring different approaches to communication and creating a dialogue about the challenges facing women who live with cancer in Haiti.”
Grace discovered that who the designer is plays a huge part in shaping how dialogue flows in a group such as this.
“I wasn’t a complete stranger because I am a woman, I turned up to listen to deeply personal and difficult stories and I used to work in Haiti. I have some familiarity with the country. On the other hand, I was the only person in the room that did not have or had not had cancer. I still had both my breasts and came from a completely different cultural and socio-economic context.”
Why does this matter?
Grace says that understanding the role that she played in the women’s dialogue is a vital part of analysing how the communication and knowledge is mediated. It’s an integral part of the method itself.
“My lack of knowledge about the assumptions that guide the narrative about the disease in Haiti led to an articulation of those very assumptions. In some sense, my presence and lack of understanding helped reveal and articulate the narratives that guide certain behaviours and helped pinpoint certain communication pathways that could be explored,” she says.
Grace went on to conduct the same kind of session, but with doctors and nurses familiar with treating patients with breast cancer. The group developed a number of interesting ideas about communication and social activities that could take place in hospital to not only increase patient comfort and improve adherence to programmes of treatment, but also create more cohesive support groups among family members.
How hospitals can help
Grace’s research found that the actual treatment space – hospitals and their chemotherapy wards – could be absolutely key to encouraging women to adhere to treatment programmes, instead of putting them off. In their group sessions, women expressed their fear and isolation about the treatment space, while medical practitioners discussed the huge problems they face getting patients to return for their next treatment session.
“The hospital space could be key to engaging patients and family members in communication initiatives,” says Grace. “The hospital could offer a short communication workshop and material to patients.”
With greater knowledge on how to talk about the disease, patients and their families will be better able and more comfortable discussing the condition in their communities or non-hospital settings, such as church, she explains.
Grace held a further session with a small group of men who had not experienced the disease personally, in order to gain a better understanding of how breast cancer is seen and understood from their perspective. She says that “a few of the participants expressed a feeling of stress and sadness [after watching films of women discussing their cancer]. While expressing solidarity and a sense of support for the women, there was also a sense of confusion about how to relate to the problem”.
She saw the importance of communicating and sharing the experiences of men who have supported a family member of cancer, something that other men could watch and learn from, and women sufferers could perhaps gain reassurance that their partners would not abandon them, or that they would not be able to marry because of the disease.
With $60,000 in funding from the Union for International Cancer Control (UICC) and Pfizer Inc., Grace plans to continue her work with Project Medishare.
The next steps
Through her research, she’s seen how vitally important it is to communicate about illness within communities, and communicate with medical practitioners and patients at all stages of the process as an integral part of spreading knowledge. “A sensitisation campaign needs to reach the general public and this will require the reach of community health workers,” she says.
Grace recognises that a sensitisation initiative should be led by those who have lived through the disease and their family members – her research found that survivors are willing to tell their stories and a communication “tool-kit” will empower them to do it, rather than just capture information.
On 13 October, during Breast Cancer Awareness Month, the Union for International Cancer Control (UICC) and Pfizer Inc. announced that 20 organisations in 18 countries will receive grants totalling $760,000, under the SPARC MBC Challenge, a first-of-its-kind initiative to address the unique challenges facing women with metastatic breast cancer worldwide.
Over the next year Grace will be working closely with Project Medishare’s Cancer Programme director, Dr Vince DeGennaro to build on the work she began at Goldsmiths.
“SPARC MBC Challenge will enable Project Medishare to work with Haitian organisations to refine and build on this research. Our goal is to build a tool-kit to help survivors and community health workers communicate about the disease and make sure more women get into treatment earlier.
“The tool-kit will also be a catalyst for building a collaborative network of healthcare providers and community health workers who will help refine and use the tool-kit and raise awareness about breast cancer and engagement with health services provided.
“The encouragement I was given to pursue creative and imaginative inquiry from my course convenor Marianne Franklin and design tutor Mike Waller played a major part in the development of this project and hopefully in helping to build an initiative that works for and helps the women of Haiti,” says Grace.
Find out more about the MA in Global Media and Transnational