The missing piece: integrating holistic care in cancer treatment in resource-limited settings

Dr Deressa gives a vivid account of how he developed a peer psychosocial support group in Ethiopia, bridging the gap in holistic cancer care in resource-limited settings.

Working as an oncologist in a resource-limited setting presents unique challenges. In countries with abundant resources, the healthcare facilities have cutting-edge technology, offering patients the best possible care. In places with resource limitations, the canvas is painted with a different brush – here, the landscape is marked by modest facilities, scarce equipment, and a scarcity of skilled professionals. In Ethiopia, where I currently practice, these disparities are not just statistics but the daily reality for countless patients battling cancer.

I underwent a part of my specialty training at Inselspital in Switzerland, renowned as one of Europe's premier hospitals. Upon completing my training, I flew back to Ethiopia to work in my current hospital. In just six hours of flight, I witnessed firsthand the vast disparities in global cancer care, exemplifying the profound inequities that exist globally. When I think of global cancer care disparity, I think of these two countries.

Patients deserve comprehensive, dignified care that encompasses both physical and mental well-being. In the realm of cancer treatment, the integration of holistic care, including mental health and psychosocial support, is crucial for improving patient outcomes. However, while these may be frequently overlooked components of medical care in many settings globally, they are particularly so in resource-limited countries.

Acknowledging the issue

During the COVID-19 pandemic, the number of patients seeking oncology care declined drastically, offering me the opportunity to engage in more meaningful conversations with the fewer patients who did visit the oncology clinic. It was during these interactions that I encountered stories that took me by surprise.

For instance, many patients shared experiences of divorce following their cancer diagnosis, attributing it not only to the financial strain on their families but also attributing it to various misconceptions, such as the belief that sexual activity could exacerbate their condition. Others believed in dietary restrictions, avoiding wheat consumption out of fear it would exacerbate their condition. Some even resorted to purchasing expensive raw camel milk, viewing it as a cure for cancer.

Many patients and their families also believe that cancer is an automatic death sentence, which puts them under massive strain, subject to anxiety and depression. Sadly, this perception often extends to their social circles, leaving them without a supportive outlet. And the absence of a support system heightens their susceptibility to misinformation, leading some to believe harmful notions such as chemotherapy or radiotherapy being detrimental to their health.

This lack of reliable guidance impacts their treatment adherence and leaves them vulnerable to seeking alternative options out of a desire to prolong their lives. Unfortunately, I observed numerous instances where individuals were adversely affected by these decisions.

Finding cost-efficient solutions for better patient mental health

Recognising the pivotal role of holistic care in addressing these challenges, my team and I were compelled to take action. While we were able to correct some of the misinformation and misconceptions through educational efforts, addressing the psychological and emotional dimensions presented a distinct challenge.

With limited expertise in psychology and psychiatry, and no dedicated psycho-oncologist available, we faced a significant gap in our ability to provide comprehensive support. Given the constraints of our training and resources, we needed an innovative solution to address the psychological needs of our patients effectively and improve their overall outcomes: peer psychosocial support groups, cheap, affordable, and applicable.

Building on the success of similar initiatives in HIV care, we introduced these groups into cancer care within a public hospital setting for the first time in Ethiopia, starting with breast cancer patients, given the prevalence of the disease among women. To ensure cultural acceptance, we structured these groups in the manner of a traditional Ethiopian coffee ceremony.

In Ethiopia, neighbours often gather for coffee, engaging in a unique ceremony where they discuss various social issues, share information, and support one another. Embracing this tradition, we invited breast cancer patients and survivors to join us for coffee one Saturday in October 2020, and encouraged them to engage in open discussion.

Approximately 20 women with breast cancer attended, each sharing their journey of diagnosis, treatment, and overall experiences. The atmosphere was filled with emotion, as the women shared stories of hardship and resilience, shedding tears. Half of the women revealed that they had been divorced as a consequence of their breast cancer diagnosis, and many had turned to herbal remedies before seeking medical help.

The shared experience provided a sense of relief and camaraderie. It became evident that these women had been longing for a safe space to express themselves and connect with others who understood their struggles.

We transitioned to holding sessions once a month, every Saturday, establishing it as a consistent platform for discussion. With each session, the number of participants grew steadily. Notably, professionals from other departments and the community began to attend, showing appreciation and offering support by providing refreshments to enhance the experience.

After running approximately five sessions, we decided to formalise the structure and delegate responsibilities to the survivors themselves. We organised the group to have three leads: a peer, a female facilitator, and a physician working in oncology.

The peer leader, typically a cancer survivor, was tasked with selecting discussion topics, facilitating conversations, and, if necessary, inviting professionals to provide additional insights. The female facilitator, usually a nurse in the oncology department, supported the peer leader with logistics, helped coordinate with professionals, and documented the discussions. The physician's role was primarily to listen, refraining from active participation in the discussions but providing correction or clarification when necessary to ensure accuracy and safety.

To ensure effective leadership within the group, we selected a few active women as peer leaders, with one leader serving at a time while others acted as deputies. We provided them with training on the scientific facts and figures of breast cancer and its treatment, as well as techniques for facilitating group discussions. This empowered the patients to take a more active role in leading the sessions, with our team providing support as needed.

Initially, I funded the support group out of my own pocket. As the initiative gained momentum, I shared our activities through social media and email, garnering support from colleagues and friends. Among those I engaged with was Stefan Rothschild from the DEAR Foundation, with whom I had previously collaborated on their DearMamma breast cancer initiative in Ethiopia.

Recognising the potential impact of our efforts, the DEAR Foundation expressed interest in supporting our cause. This led to the establishment of Bridge the Gap Ethiopia, an NGO aimed at formalising and expanding our work to provide comprehensive support to cancer patients in Ethiopia.

The partnership with the DEAR Foundation also incorporated the DearMamma Breast Cancer Awareness programme, aimed at reducing breast cancer mortality through awareness and early detection. This collaboration extended beyond the support group, disseminating vital information within the community and among healthcare professionals and societal leaders.

With financial assistance from the DEAR Foundation, the psychosocial support group gained stability and operated more robustly. Women from remote areas were also able to attend, as we could now cover their transportation costs.

In addition to emotional support, the group provides practical insights and guidance, helping individuals navigate their challenges. Through shared experiences, participants discover effective coping strategies, manage the psychological impact of their diagnosis, and regain a sense of control over their lives. Participants report a reduction in stress, anxiety, and fear, alongside a renewed sense of hope and purpose.

Members of the support group also volunteer as peer counselors in routine clinical care, aiding in treatment adherence and providing invaluable support to patients referred by oncologists and GPs. Their impact extends beyond the clinical setting, as they advocate and educate in breast cancer awareness programs and training, addressing misconceptions and emphasising early detection.

Community awareness and active engagement of support group participants attracted government attention. These individuals began receiving invitations to major training sessions and cancer-related meetings, adding significant weight to these gatherings by sharing their personal stories and advocating for cancer awareness.

Building on our positive experiences and research findings, we firmly believe that integrating psychosocial support into routine cancer care is necessary and achievable, even in resource-limited settings such as Ethiopia.

The programme has now extended to other hospitals across the country, including Haramaya University Hospital, Ali Birra Memorial Cancer Center, and Tikur Anbessa Hospital. These hospitals now all host support groups for breast and cervical cancer survivors. Each successful expansion brings us closer to our ultimate goal of influencing policy to recognise the essential role of psychosocial support in cancer care.

Our vision is to integrate this support into every hospital so that all patients and survivors receive the comprehensive care they need. We also need to make the programmes sustainable, by incorporating mental health and psychosocial support standards into national cancer care guidelines and in national cancer control plans (NCCPs), securing adequate funding, and expanding the healthcare workforce trained in this field.

Ensuring holistic cancer care requires a collective effort from policymakers, healthcare providers, and stakeholders to recognise and incorporate psychosocial support as an integral component of cancer care.