Oncology literacy 101: supportive care

Sr Rowan Robinson ends off her oncology literacy 101 series by discussing supportive care.

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When you’re going on a long journey, it’s often helpful to have somebody assisting with directions, especially when you’re visiting a place that is unfamiliar. Should I turn left, or right? How do I get to my destination safely and as comfortably as possible? A navigator is the person who sits in the car next to you, guiding you in making some of these decisions.

Cancer care continuum

Being diagnosed with cancer is a little like going on a journey. It starts with the initial screening and diagnosis, moving through treatments, supportive care, survivorship, and sometimes also palliative end of life care. This pathway is called the cancer care continuum. 

It’s an extremely personal journey for each person diagnosed with cancer, as well as for their families, with no two persons having exactly the same experiences or journey. Where available, it’s helpful to have a navigator guide you along the way.

Type of navigators

There are different types of navigators working in cancer care. 

Each have their own skill, knowledge and experience and support the patient and their family during this personal journey. 

• Nurse navigators are qualified professional nurses who have undergone specialised training in oncology who are able to provide additional support through health education, often repeating information that may not have been understood or by directing the patient to appropriate resources. 
• Patient navigators include qualified social workers who are trained in offering psycho-social support.
• Community-based navigators offer essential support by speaking up for the patient and making sure that their voice is heard and that their needs are met. 

Barriers of care

All navigators, together with their patients, identify barriers of care. These barriers may be preventing the patient from getting the care that they need and can be divided into physical, emotional and psycho-social barriers. 

• Physical barriers may include pain, discomfort, and even distance to a treatment centre and transport issues. 
• Emotional barriers like fear, anxiety and loss of hope may influence whether the patient will seek medical advice and continue with treatment. 
• Psycho-social barriers often relate to issues of language, culture, religion and financial challenges as some examples. 

Listen and explore solutions

The navigators are there to listen and explore possible solutions with their patients that are in keeping with that individual’s life goals. It’s often comforting being able to discuss important issues of concern in your own time, at your own pace and in your own language. 

Each person is treated as a unique being, and the importance of promoting the best possible quality of life for that person is emphasised.

Quality of life

Quality of life refers to the standard of health, comfort and well-being that you experience. It includes aspects that involve your body, mind and soul and not just the disease. 

During your cancer journey, your quality of life may vary considerably and it’s therefore important that the navigator checks in with you at regular intervals to assess how you’re doing. 

By asking a few simple questions about common symptoms experienced by patients with cancer, such as anxiety, fatigue and appetite, a profile of how severe your symptoms are can be documented over time. This information can be used to guide nursing interventions or medical treatments as prescribed by your doctor, to restore comfort, dignity, or to bring distressing symptoms under control.

Oncology navigation

Oncology navigation is quite new to South Africa and not all treatment centres have access to a navigator yet. It’s my hope that this essential service will continue to develop and expand within this country, providing a compassionate bridge and promoting improved communication between the patient, the treating team and a sometimes confusing healthcare system.

References:

1. Burhansstipanov, L. & Shockney, L. 2018. “Team-based oncology care” in Team-based oncology care: the pivotal role of oncology navigation. Pp. 1-11. Spring International Publishing. Switzerland.
2. Ferrans, C. & Hacker, E. 2011. “Quality of life as an outcome of cancer care” in Yarbro, Wujcik & Gobel’s Cancer nursing: principles and practice. 201-215. Jones & Barlett Publishers. Sudberry.
3. Hui, D. & Bruera, E. 2017. “The Edmonton System Assessment System 25 years later: past, present and future development”. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5337174/. Accessed 22 October 2020.