Understanding cancer challenges from the ‘lens’ of the patient

Introducing a South African research/advocacy initiative to document challenges of having cancer from the perspective of those who have 1st hand experiences.

Too often the healthcare system relies on survey, academic material and theoretical models to develop ‘best practise’ guidelines and protocols. While it makes sense that if one needs to know what cancer patients struggle with or need, that the obvious thing would be to just ask them directly. Gathering personal versions of stories from patients about their experiences and problems creates a complex methodological challenge when trying to analyse and present this information in a reliable and valid way.

In an attempt to gather first hand feedback about cancer challenges, People Living With Cancer (SA) have launched a photo advocacy project that strives to give cancer patients the opportunity to have their experiences documented in a national research and advocacy project.

By means of an interview process, this project gathers photo-voice contributions from people with any type of cancers and also from others associated with the field of cancer. People who participate in this project give consent for their stories and photographs to be used and published for cancer advocacy, education and research purposes.

An example of a photo interview can be seen below where a 61-year-old man from Eastern Gauteng who had advanced prostate cancer wanted to contribute details of his cancer challenges.

While this story may be very upsetting and confronting, it is the authentic narrative of this gentleman’s personal experience. It is what he wanted to say and it shows the hard and honest facts of what he is dealing with. He explains himself very clearly and bravely saying honestly what he feels in his situation.

This gentleman’s feedback highlights the following advocacy themes and issues:

• The importance of access to early diagnosis of cancer
• The significant effect of cancer treatments on the quality of a person’s life
• The debilitating effect of advanced cancer on both the body and the mind
• The emotional trauma of cancer (loss of dignity, loss of self worth)
• The problems of isolation and abandonment
• The challenge of achieving properly informed consent for treatments
• The importance of medical information being properly understood
• The problem of cancer patients feeling powerless
• Lack of respect and attention to a patient’s rights

It is very important that challenges that cancer patients experience are taken seriously and incorporated into standards of best practise and management protocols. The importance of good research to educate the various medical professionals as well as the general public about patients’ rights cannot be overestimated. Without good research and sound evidence it is very difficult to have needs taken seriously and ultimately recognised as part of patient care.

At the end of the data collection process, all photo interviews will be analysed and the results published in academic forums, and also made available to a variety of stakeholders in South Africa.

It took a long time going to the hospital to get a diagnosis, but when it finally came it was cancer. Firstly it was bladder cancer. So they operated on me. I had a catheter for a while. That was not a good feeling. About a year after that they said I had prostate cancer again. And this time they said it had spread. The treatment included chemotherapy and hormonal therapy. Before that I had surgery and radiation. Since then my health has taken a toll. I am always sick. I used to weigh 120 kg, now I am a mere 50kg and sometimes less. It is very hard because I can’t walk and I can’t sit properly other than being in a wheelchair. I haven’t seen my family for almost a year since I got into this hospice. I just want to die and be peaceful. This pain is just too much. I received treatment that I didn’t understand and didn’t consent to. The doctors chose what was best for me and now look at me. I am useless.

This gentleman chose a photograph (above) to further illustrate his sense of incapacitation, helplessness and his desire to be free from suffering and rest soon.

Written by Lynn Edwards and Linda Greef