Over seven sessions, participants were invited to take photos relating to the following subjects
- Explain what it is like to live with your illness
- What would you like to tell other people about what it is like to live with your illness?
- What would you like to tell other people about the care at Tiyanjane and cancer?
Ideally the ideas for subject areas should be participant led, but – due to unfamiliarity with the whole process – this would have been difficult in our study, therefore ideas for possible subject areas were initially adapted from those suggested in an online Photovoice facilitators guide (see below) and modified by discussion amongst the research team.
There is a tension between making subject areas broad enough to allow participants to express what they want yet not so broad that nothing related to the research questions or objectives is gathered! Subjects 1 and 2 reflect an open approach, whilst subject 3 was focused on one of the specific objectives of the study (it was added as not much had come out on that subject through earlier group sessions). A fourth subject focusing directly on costing (the focus of the PhD) was initially drafted but ultimately rejected by the research team. We decided it was potentially wide open to misinterpretation, particularly given the problems we had already met in setting participant expectations. Maintaining reflexivity in the process of subject setting and recognising the potential that you may limit participants and only ‘get what you ask for’ rather than optimising potential for expression of broad coverage of themes and issues. Careful crafting of words through a process of discussion within the research team proved invaluable in this process.
We wrote the subjects on flip chart paper where they formed a focus of reflection for the researchers during the group sessions also guiding those participants who could read. Use of flip chart paper also enabled us to revisit these subjects several times during our meetings. For example, at the start of one meeting we may be asking participants to discuss and select photographs taken around subject number two, whilst later in the same session their group discussion would be reflecting on hard copies of photos taken around subject one. During the final group discussion we posted up all the subjects that had been used and asked participants to revisit these with any of their photographs. Subjects two and three contained the phrase ‘what would you like to tell other people’ which also worked as a useful stepping stone for later advocacy activities.
Use or relevance of the subjects for the participants
Our experience was that participants took a variety of photos, some relating to the subject, some ‘just because the neighbour asked me to take a picture’ – so whilst some were relevant, others were much less so. Understanding the role of the subjects wasn’t straight forward but provided some form of general guidance whilst their understanding and ability to reflect on these took time to develop. By our final session as we looked together over all the subject areas it helped the participants to reflect on whether there was anything else they wanted to add.
Initial subject examples
What is it like to live with this illness?
What in my life or community has helped me?
What in my life or community has been most challenging?
What do I want to tell other people about living with illnesses like mine?
How is my life different now from how it was before? What is better? What is worse?
What are my hopes for the future? And what might help me get there?