How do we put the people who use health and social care services at the centre of our work? How do we communicate their lived experience to policymakers? Or better yet, create a platform for them to express their experiences, perspectives, and concerns in health and social care services. One avenue to consider is the use of creative methods.
In a recent webinar hosted jointly by CES, Jigsaw and Mental Health Reform, Dr Susie Donnelly (CES Project Specialist) presented her experience of using the arts-based methodology, Photovoice, in research and evaluation.
Photovoice is about creating a platform for communication between those who make policy and those who are affected by it, “It [is] a grassroots approach to photography and social action. It provides cameras not to health specialists, policy makers, or professionals, but to people with least access to those who make decisions affecting their lives’ (Wang, 2005).
Promoting what Brazilian educator Paulo Freire has termed "education for critical consciousness," Photovoice allows people to document and discuss their life conditions as they see them. The process enables people to communicate to policymakers where changes should occur, as they see it, to improve outcomes for communities. Caroline C. Wang and Mary Ann Burris pioneered Photovoice during the 1990s in rural China to empower women to record and reflect upon the conditions of their lives, especially their health and social care needs.
Photovoice has its roots in critical pedagogy and the idea that images “teach” people and thus can influence policy. It challenges the idea that the policymaker has a monopoly on knowledge about a service or policy area. Instead, it recognises that the people with lived experience can teach policymakers – for example, the practitioners that deliver a service, or the people and communities that use a service or are intended for its use.
‘Photovoice embraces the principles that images teach; pictures can influence policy, and citizens ought to participate in creating and defining images that make healthful public policy’ (Wang, 2000)
Photovoice addresses power differentials, whether between researcher and subject or between policymakers and those affected by their decisions. It aims to shift this balance, placing the tools of change directly into the hands of those impacted.
Photovoice “entrusts cameras to the hands of people to enable them to act as recorders” (Wang & Burris 1997: 369)
There are several stages in a Photovoice process: from identifying the problem to coming up with solutions. These stages might not happen sequentially but indicate a general direction of the process along the Photovoice journey.
Stage 1: Conceptualise the challenge: What is the problem that needs to be addressed? For example, a primary care health care service for people living with chronic illness is underused.
Stage 2: Define goals and objectives: To understand why the service has low adoption / uptake.
Stage 3: Recruit participants and audience: Typically, you will recruit people from the community / population of interest (e.g., people with chronic illness) and you may also recruit health and social care providers / practitioners. It is important to ensure you are collaborating with policymakers as an audience for Photovoice findings; that they are invested and bought into the project.
Stage 4: Devise a theme for the photo assignment: This might be “The challenges and solutions to self-managing my illness” and/or “The challenges and solutions to delivering this chronic illness service”. The researcher should consider co-designing this element with relevant stakeholders.
Stage 5: Training: Training could start with a discussion of the project and review of the assignment; visual literacy exercises; ways of seeing photographs; photography basics (such as framing and lighting). It should also cover ethics and power, who owns the photos and how will they be shared.
Stage 6: Take pictures: Participants might have 1-2 weeks to take photos for their photo assignment. During this time, the researcher might consider complimenting this method with traditional approaches (such as semi-structured interviews, focus groups or questionnaires).
Stage 7: Group dialogue: The participants should meet as a group to critically reflect on and discuss their photos. They (i) select photographs they consider most significant, or simply like best. They talk with each other about the meaning behind each photo, what issue the photo highlights, and what can be done about the issue or what needs to change.
The group members are then ready to tell their stories through captions (either written by themselves or taken down by the researcher). These captions provide the (ii) context for the photos taken and have the added impact of evoking emotion, insight into root causes, and appeals to actions for addressing the identified concern.
Finally, because the goal of Photovoice is to educate and influence those who can facilitate change, the group works together to (iii) identify the issues, themes, or theories they agree are the focus of their photos and captions.
Stage 8: Document, validate and share the stories: A key part of the Photovoice process is a public photo exhibition. This provides participants and decision-makers an opportunity to interact and discuss the photos. Ideally policymakers should convey a clear commitment and intention to act on the issue or concern raised. The group should have ownership over this stage (planning and promoting the event, how their images are displayed, event venue, who to invite and how the work is shared to reach policy makers, donors, media, researchers, and others who may be mobilised to create change).
If used successfully, Photovoice can enable people to record and reflect their community’s strengths and concerns, promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and ultimately to reach policymakers to affect change.
It is a method that “enables people to define for themselves and others, including policy makers, what is worth remembering and what needs to be changed” (Wang, n.d.).
With RA every morning when you wake up, the first thing I find I do is see what number I’m at on the pain scale and then is it a “hard” 8 or an easy “8”- always influenced by whether or not you’ve managed to get a full night’s sleep on the pain front. On this particular day it was hard 8, one of those days where you really don’t want to do anything other than simply cope with the pain and the unrelenting unremitting nature of it as best you can.
BUT you’re a person who is more than just their disease, you’re a wife and mother. You have obligations. You get up, get dressed and head to the sea side for the fun day out you promised your kids. On a day that’s a hard 8 though, your hands, fingers, wrists, are all too sore to be able to manage holding hands with your children. Imagine, holding hands with your 3 year old hurts too much?
It’s a hard 8 all right. So I sat with my baby in her buggy and watched my children have such fun with their dad as they ran, jumped, splashed, got soaked and enjoyed their lives but wondered why I wouldn’t or couldn’t join in.
The photo shows a sea of two halves for me. A beautiful calm sea far out, sun shining, and anyone walking past would have seen a dad having a great time with his children. For me I see the bit where the waves are crashing and breaking against the shore- the force of the waves represent my anger and rage at the disease, the havoc it has brought into my life. The crashing and breaking of the waves is often how I feel the disease attacks my body- it’s full on and pulls no punches. At times RA pulls you under like it’s a rip tide and before you know it you’re lost at sea.
Would you like to discuss the potential of Photovoice for your research and evaluation initiatives? Reach out to the project team.
