Gertrude Nakigudde, 44 years old, defeated breast cancer fourteen years ago and is now Chief Executive Officer of the Uganda Women’s Cancer Support Organisation and one of the twenty SPARC grantees.
Gertrude has been developing cancer advocacy and awareness campaigns for the last ten years and participated in the Breast Health Global Initiative as well as in several scientist–survivor programs run by the American Association for Cancer Research (AACR). Gertrude is also a member of the Guideline Advisory Group of the American Society of Clinical Oncology (ASCO). Prior to this, she successfully achieved a Bachelor of Arts in Business and worked for fifteen years as an accountant for an international logistics company.
In 2015, Gertrude received a SPARC grant to address the challenges women face when living with metastatic breast cancer in Uganda.
What is your greatest achievement related to the SPARC project so far?
I am delighted to have interviewed 66 metastatic breast cancer (MBC) patients to learn more about their clinical and psychological needs, as well as 130 family carers, 184 breast cancer survivors, 30 clinical providers and various community workers and policy makers to better evaluate their knowledge of the needs of MBC patients. Thanks to the SPARC project we have reduced the existing gap between MBC patients, carers and community workers. The Uganda Women's Cancer Support Organization (UWOCASO) has gained the capacity of conducting research, and our work has been approved by both the Uganda Cancer Institute’s Research Ethics Committee (UCIREC) and the Council for Science and Technology.
You are currently training advocates on patient navigation for MBC patients. Could you (please) tell us more about this initiative?
Before shaping the formal training of patient navigators, it was important for us to collect data assessing the psychological and physical needs of MBC patients. The data was collected by the 16 advocates that we trained; they took advantage of the interviews with MBC patients and their families to provide them with supportive care services and information.
The advocates’ results revealed that a great number of MBC patients have a low socioeconomic status as well as overwhelming social, emotional, physical and information needs. It also revealed lots of challenges and gaps in the health system affecting the health workers, the patients and their families. A majority of MBC patients interviewed were either separated or widowed and have been victims of psychological torture because of their disease. Advocates who are part of the project have continuously intervened to address the pressing needs of MBC patients during, before and after their study. Once the data is fully analysed and interpreted, we will schedule formal patient navigation trainings based on those findings. Patient navigation is highly requested by all the participants in the study.
You are also shaping television and radio programmes. What are those about?
The majority of the Ugandan population live in rural areas and listen to radios. We are shaping radio programmes to reach this type of community. UWOCASO members are running the programmes and provide information to educate people about available palliative care and other supportive services in their districts. Listeners are invited to call to ask questions or express concerns which are addressed during the programme or handled outside the studio. Through these radio programmes, patients are also allowed to reach out to our centre for emotional support and information. Radio and television programmes will be developed further to support our patient navigation programme after the data analysis stage.
Do you feel that the community’s perception of MBC has evolved since the program started?
The community’s perception of MBC has significantly evolved. We aim at engaging all stakeholders committed to fighting cancer and raising awareness about the project as well as the value of early detection and the necessity of improving survival rates and the quality of life of those living with metastatic breast cancer. We take advantage of every event in the country – such as the stakeholders meeting for the preparation of the World Cancer Day activities - to talk about the SPARC project.
We also invite MBC patients and their families to attend our monthly patients’ welfare meetings. During those meetings, we welcome guest speakers to talk about previously agreed topics, and encourage peer support by matching women of the same age and the same stage of the disease so that they can learn from each other.
In addition, since MBC patients’ families have realised that the quality of life of patients can be improved with psycho-social support and pain relief, they are more involved in our monthly meetings. Metastatic breast cancer in our local language is a scary word to patients and families because it implies an “incurable” dimension. In order to restore hope for MBC patients, the project documents translated in the local language only use “breast cancer”. We also changed the title of our monthly meetings from “Survivors welfare meetings” to “Patients and families welfare meetings”. Initially, this was aiming at reducing the stigma around MBC but it turned out that, by renaming the meetings, we have made them more inclusive (prior to this renaming, patients felt that the meetings only benefited survivors). The number of women attending these meetings has doubled indeed since the beginning of the project.
On another hand, UWOCASO membership has increased as well since women who have gained confidence through these meetings have been recruited as volunteers to support other women in their communities.
What character trait makes you good at what you do?
I always listen to the needs of the people I serve, analyse the issue and build teams and networks to drive progress. I strongly believe in combined efforts and collaboration.
For more information about the SPARC initiative and related projects, please click here
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