Photovoice background
Sharing information through the use of visuals (particularly photography) has been used in diverse fields such as public health, medicine, anthropology, sociology, education, and psychology to promote social justice and understanding of community experience for more than 50 years ([3]; [4,5,6];). Photovoice methods used today are based on the foundational work in participatory action research of Caroline C. Wang and colleagues in the 1990s [6,7,8,9]. Within this context, Photovoice asks people to represent their lives, point of view and experience using photographs and narratives (Fig. 1).
Photovoice has been applied to a wide variety of settings, people, and issues ranging from development needs of women in rural China [8] to community re-integration after deployment (add NOLA reference), and the experience of homelessness [10]. Researchers have also used Photovoice to create awareness of lived experience with chronic conditions and disabilities such as acquired brain injury [11], asthma [12], HIV/AIDS [13], mental illness [14], spinal cord injury [15], substance use disorders [16], and tuberculosis [17]. Applied to health and healthcare, Photovoice can help to illuminate gaps in clinical knowledge, contribute to efforts to improve quality and efficiency of care, and identify patient-centered goals and possibilities for healing [18]. The process of talking about participants’ photographs can help to bridge the discipline gap between patients and clinicians, bring out tacit knowledge and understanding, and generate common understanding of issues, contexts and solutions [19].
Individuals who participated in the Photovoice project were recruited as patient partners from initial listening groups conducted with adult patients who had lived experience of receiving care in the ED for low-risk chest pain and anxiety. The term patient partner specifically applies to patients engaged in the planning, conduct, or dissemination of research and should not be confused with the role of patient as a research subject. Six patient partners (AP, AB, CM, LS, MC, VC) along with the P2P Project Lead (JNC) and an expert Photovoice consultant (LL) embarked on a six-week Photovoice project to document the impact of anxiety on peoples’ lives. The patient partners who chose to participate were diverse in terms of age, gender, race, and occupation. All patient partners screened positively for high levels of anxiety on the Generalized Anxiety Disorder 7-item scale (GAD-7). For the purposes of engagement activities, self-report of anxiety was not confirmed as the GAD-7 is aligned with diagnostic criteria for generalized anxiety disorder and also has good operating characteristics for panic disorder, social anxiety disorder, and post-traumatic stress disorder [20].
Initial learning about Photovoice among participants included an introduction to the foundations and method of Photovoice, a review of ethics and safety guidelines, brief instruction on photo-taking tips, and practice developing captions based on sample photos. Participants were instructed to ask permission before taking someone’s photo, and to provide written consent for themselves and for any individuals appearing in photos to include the photos in the project exhibit. Participants then used disposable cameras for weekly photo assignments intended to describe both negative and positive aspects of lived experience with anxiety. Examples of guiding questions for weekly photo-taking included: ‘What is it like to live with an anxiety disorder?’ and ‘How does anxiety affect your health … work, family and social life?’ Each week, participants turned in their disposable cameras in for developing and reviewed printed copies of their photos from the prior week.
Patient partners approached their photo-taking seriously. They seemed to feel a responsibility to share their lived experience and contribute to improving quality of care for anxiety disorder in the emergency department. As a patient-partner peer leader noted:
We are trying to get anxiety seen as something serious, which it is. Anxiety is not just feeling anxious. It is something that can be debilitating. It needs to be taken more seriously in the Emergency Department. This project is our chance to talk about anxiety, so people can see where we are coming from. (Patient Partner Peer Leader).
As they shared their photos with their patient partner peers, the group used reflection questions based on the SHOWeD method to structure one-to-one and group discussions about the photos as well as their meaning and significance [9]. SHOWeD is an acronym for structured reflection questions [9]: What do you See here? What is really Happening here? How does this relate to Our lives? Why does this situation, concern, or strength exist? What can we Do about it?
Patient partners used journals to record their thoughts and support group discussions and caption-writing. Participants chose which of their photos to discuss with the group and share outside the project setting. Facilitators transcribed the focus group discussions and developed draft captions, using wording from the transcripts, for each photo chosen for the project exhibit by participants. Through an iterative process that involved taking additional photos, writing, reviewing, and discussion, participants refined their photo selections and what they wanted to say about them. During time outside of regular meetings, participants used a secure online platform (e.g., Slack) to communicate with each other and facilitators about their photos and captions, create a title for their exhibit, and develop a common format for their exhibit posters.
A wrap-up event brought together research stakeholders (patient partners, clinicians, researchers, health system leaders) to share learning from the P2P project including challenges to current care delivery in the ED relative to low-risk chest pain and anxiety, epidemiology of the problem (i.e., prevalence of low-risk chest pain and anxiety), a gallery exhibit of the Photovoice posters, semi-structured small group conversations among clinicians, investigators, and patient-partners, and opportunities to inform decision-making about treatment options through PCOR. Bringing together stakeholders at the event was intended to foster conversations about patient experiences with anxiety disorders as illustrated in the gallery exhibit, gain stakeholder input and feedback on the proposed research idea and question, gain support for prioritization of the research topic, and plan next steps for informing a research project.