Developing a resource centre for patients with metastatic breast cancer in Tanzania

Context

Most breast cancer patients in Tanzania present with advanced disease. With increasing emphasis on early detection and curative treatments, the specific needs of patients with metastatic breast cancer are largely unknown and often not met. Most patients experience high levels of anxiety about treatment, potential side effects and life after treatment as well as living with potential complications of treatment, for example as a result of mastectomy, chemotherapy, and radiation therapy. There is a clear need for a structured and established information centre to support such patients in the country.

Ocean Road Cancer Institute (ORCI) is Tanzania’s national cancer referral centre, and the only dedicated cancer facility in the country. It was established by an act of parliament  in 1996 and functions as an autonomous independent cancer institute directly under the Ministry of Health. Amongst the institute’s key functions are to provide medical care to inpatients and outpatients with cancer, promote educational programmes on health, conduct training programmes, provide consultancy services and perform research activities to support the preceding areas of work. ORCI established a Breast Cancer Support service in 2018, which is helping to identify the informational needs of breast cancer patients in Tanzania.

Project description

ORCI was awarded a SPARC award in October 2019 as part of the Round 3 cohort of 11 grantees. This project aims at establishing an information resource centre that provides culturally sensitive information and support to MBC patients.

The first phase of this project was to conduct a qualitative research study to better and more thoroughly identify the needs and the current situation of MBC patients in Tanzania. Three focus group discussions were held with a total of 18 patients.

The second phase was to create educational materials, responding to the needs identified. Seven information brochures were created and translated to Swahili on the topics of: breast cancer (overview), investigations and diagnosis of breast cancer, treatment of breast cancer, chemotherapy, side effects of treatment, and lymphedema and nutrition for cancer patients . 15 nurses and breast cancer survivors were trained in delivering information to MBC patients using these brochures.

After these initial steps of identifying informational needs of MBC patients, creating educational materials and training staff on delivering information to patients, ORCI inaugurated a physical cancer information service centre established within the Institute in May 2021. Dr. Julius Mwaiselage, Executive Director of ORCI, was invited as a guest of honour to open the centre. 

The project addresses knowledge gaps, increases the availability of dedicated educational material, and trains and develops champions who will support provision of these services.

Impact

Through the project, culturally acceptable and relevant materials have been developed to provide MBC patients and their caregivers with the necessary information to support their cancer journey. 

In OCRI, a resource centre is now established to give MBC patients and their families access to in-person support. The centre functions under the Palliative Care Unit. As a result, patients have a central place to go to find tailored information and support on MBC, enabling them to have easier access to services, and find answers to commonly encountered questions.

In addition, a specialist is also available through the centre during hospital hours to distribute information and give support specifically tailored to the individual patient’s needs. In the first year of the centre, over 2,300 individuals have been supported by the 15 health professionals trained in this project, and 2,428 informational leaflets distributed.

In addition to the direct impact on patients, staff involved with the project have gained a better understanding of the needs of patients with MBC, both through the research outcomes and the daily interactions with patients. This has subsequently translated to greater empathy towards these patients and improved quality of care:

“When I began working here it was like any other job. I would come in the morning, plan to complete my work and leave. But after being involved with the project I have come to understand the needs and challenges of these women, now I am eager to learn about breast cancer and try and help the patients.” 

Junior nurse at the resource centre 

After the end of the grant period, the centre has expanded its services to support patients with other cancers additional to breast cancer, as many queries came in for information related to cervical cancer, colorectal cancer and oesophageal cancer.

The resource centre is working to open a helpline that will also support patients at a national level. Since the Institute is a national cancer referral centre, it is expected that the services provided by the call centre will be available nationwide and will hopefully help provide easy access to vital information related to cancer. This will help patients to: avoid delays in care due to misinformation; save scarce resources that could be directed towards treatment; and dispel common myths and misconceptions in the communities regarding cancer and its treatment. 

More about the project

Organisation's website: Ocean Road Cancer Institute (ORCI)

(Information from the project description and context is compiled from the final SPARC report)