getting started

Almost everyone I have spoken to has expressed interest in the Photovoice methodology I am using in my PhD.  Although photovoice projects have mushroomed in recent years it is still not that easy to find out what it’s all about and how to set up your own photovoice research project. This site is for intended primarily for researchers but may of interest to anyone interested in photovoice work. Mine is the second (or possibly third?) research project that I know of to use photovoice in Malawi.  I’m hoping to get input from these researchers on this blog so that we can demonstrate successes, challenges and different ways in which photovoice can be utilised.

I’m now just one week from starting data collection, so off we go…

Deciding on subjects

Over seven sessions, participants were invited to take photos relating to the following subjects

  1. Explain what it is like to live with your illness
  2. What would you like to tell other people about what it is like to live with your illness?
  3. 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?

Providing study participants with cameras

It makes sense that all cameras should be the same for ease of training and consistency of quality.  I was able to benefit from using cameras previously used by the CAPS photovoice team who had used a Nikon Coolpix A10 camera.  It’s a small simple digital camera which has proved robust in the hands of two cohorts of relatively inexperienced photographers.  Other requirements include 2 AA batteries, SD card and plastic zip-locked bag to protect the equipment from dust.  All cameras and SD cards are labelled and distributed using a sign out sheet.  Spare batteries should be available for distribution.  In my study the cameras are being kept by participants throughout the three weeks period of photographic data collection. Any concerns about camera safety are followed up by the field work coordinator (home based care nurse) reporting to the field workers (home based care volunteers) who visit the participants at home.  This is relatively straight forward as the volunteers are already known to the patients and families, they have been to their homes and they are from the same community.  So far, we have had a couple of incidences where we needed to do some follow up of cameras – once when an elderly participant forgot to bring the camera with her, and a second time when a participant failed to attend. It turned out he had got some short term piece work and had taken the camera with him (as he thought he was going to return straight to the next group session).

Handing out these relatively expensive bits of equipment for study participants to use and keep raises issues of safety and risk which is important to consider in planning and is likely to be of concern to ethical committees.  Level of risk will vary depending on a number of factors including the details of the specific environment, the study group and their relationship with the research team before, during and after the study.  We should prepare for the possibility that participants may sell the cameras, may lose the cameras, or they may be stolen.  Rosalind McCollum told me how they had to use security personnel to travel with young people taking photographs in their study in Korogocho – a large informal settlement in Kenya. Initially I had planned to leave the cameras with participants for a maximum period of 48 hours each week for but after discussion with the team and consideration of the environment we decided to leave cameras with the participants for a longer period to enable more freedom and time to take photographs.  Ndirande (our study site) is a crowded, bustling chaotic environment but it is not characterised by violent crime. There are strong existing links between study participants and the palliative care team. However for anyone planning a photovoice study it is critical to consider these issues and put in  appropriate safe guards.

 

Managing participant expectations 1

From feedback during our first team de-brief it was clear that patients and families had unexpressed expectations from taking part in the research that needed to be addressed.  All the information had been provided in the patient information leaflet, which was then reviewed once and then twice before participants were invited to ask questions before signing their consent forms.  Despite this process (which happened over a period of 3 weeks prior to the start of the study) it was clear that a number of strongly held yet unspoken expectations remained within the group.

Our approach was to revisit the topic of expectations directly with participants during our second group session by asking them to express any thoughts or ideas they had as they joined the research project.  The atmosphere in this session was more relaxed and open as people began to get to know each other and understand what was being required of them. For most participants they expressed the hope that they might receive further help with their condition, either in the form of extra (or different) medications or – in one case – the thought that their patient might end up being flown overseas to receive treatment.  Requests for help (both for themselves and other family members) have also formed a part of their photographic subject material during early sessions.

It would be interesting to know whether unspoken expectations are a common occurrence in other research projects in Malawi (or other similar socio-economic settings), in other palliative care research settings or whether this is particular to this vulnerable patient group who live with incurable disease in a setting where treatments (for many conditions not only cancer) are frequently not available.

What do we offer them for their involvement in this Photovoice study?

A chance to gain some experience with photography, transport reimbursement, mobile phone top up (so they can contact us in the event of difficulties or danger with the camera), lunch and snacks during the group sessions, with a T-shirt and twenty hard copies of the photographs that they have taken at the end of the project.  Intangible benefits include involvement in the group process and advocacy activities.

session one : consent and training

After months of thinking and weeks of planning it was incredible to see 19 people sitting quietly in anticipation for the start of our first session today.  Of the 9 households (18 potential participants) who received pre-screening 6 turned up, of whom 2 were represented by one person (one a patient and the other a guardian), making a total of 10 participants.  These were accompanied by 8 volunteers from the community who are assisting for the duration of the study in their new role as research fieldworkers – to support and monitor participants at home and as they plan to come to the venue twice a week over the next three weeks.

The research team worked really well together taking initiative and filling gaps where needed.  We are: one doctor (myself), two experienced palliative care nurses known to the patients (field work coordinators), one lead and one assistant qualitative researcher and a photographer.  Pre-screening and sensitisation for participation had been carried out by one of the nurses who works within the community, so the process of sensitisation was relatively quick involving a recap of the Chichewa patient information leaflet, followed by a brief question and answer session.  Those of us involved in clinical care were not responsible for this sensitisation and consent in order to minimise any possibility of coercion. As a general rule self-expression and questioning in Malawi is discouraged, alongside strong cultural traditions of politeness and respect particularly shown to those in positions of authority (and/or potential influence). It would be unlikely to see participants vocalising objections in an unfamiliar group particularly with the inherent power differentials of a research setting. For our purposes it seemed that those not wanting to participate had in effect ‘voted with their feet’ by not turning up on the day, so I felt happy enough about that.

After tea break we went into the first photographic training session.  Only 2 people had ever previously used a camera; a similar number had cameras on their phones but had never used them.  It was fun watching them all getting to grips with the simple (though fairly robust) digital cameras, loading batteries, switching on, pressing buttons, moving around inside and out taking pictures, whilst chatting and laughing together.  We qu

ickly realised one patient had limited sight as a result of her brain tumour which sadly was going to stop her from further participation, though we advised her guardian (her son) to take pictures that she requested.  Our oldest participant (at 87) clung on fiercely to her camera… we’ll have to wait and see whether or not she will manage to take any pictures!

The venue hosted us well and all the participants were happy to be sent off with a full stomach of chicken and rice/nseema to end the morning.  We finished with a team review meeting using a standardised contact summary form.  We decided to spend more time in the next session talking through expectations (of benefits) that participants may have from the study (such as receiving extra care for their homes/social conditions, taking away the cameras etc.) which they may not have felt at ease to fully express during this  first session. Tomorrow we will do a bit of extra screening to see if another couple of other households (under palliative care in neighbouring communities) can join us to keep the participant numbers looking healthy.

so far so good. We even had electricity today (though we don’t actually need it until Monday) – fingers crossed!

Photovoice : research or intervention?

The most helpful answer to this question that I have heard was given half way through a three day course run by Photovoice.org that I attended in London earlier this year. We were a group of 13 participants, around 9 of us attending having a specific  interest in research: from those starting out on a Masters project, to experienced qualitative postdoc university faculty. An American participant who had run his own photovoice research project amongst nurses after the Haitian earthquake explained that the North American influenced strand of photovoice described by Wang and Burris in the late 1990s had driven the research related expansion in photovoice whilst on the opposite side of the Atlantic Photovoice.org predominantely focused on participatory photography as an intervention.

There is no real need for concern about this, although understanding why and how photovoice is being used in any particular situation can help to provide clarity and direction when searching through various on-line resources as you plan your own project. One of my hopes is that using photovoice will enable me to combine a bit of both, as it implicitly supports the change in role (and power dynamic) of participants from that of ‘being researched’ to ‘being the researcher’.