For World Asthma Day 2021, RESPIRE PhD student Hani Salim writes about her use of Photovoice in her study to understand the challenges adults with limited health literacy have in self-managing their asthma. The project explores the subjective experiences of living with asthma among people with limited health literacy in Malaysia. I sought to understand the challenges people with limited health literacy face in (self-)managing their asthma, their perceptions and experiences of self-management and the support that would help them in the Malaysian context. This project is supervised by Professor Hilary Pinnock, Dr Ingrid Young (Edinburgh), and Professor Lee Ping Yein, Professor Sazlina Shariff-Ghazali (Malaysia) Why I chose Photovoice for this project I used Photovoice methodology to give people with asthma a voice to discuss the social issues and inequalities they may face in ways other than verbal. Photographs taken by the participants themselves aided in story-telling and added a visual dimension to the stories told. By combining language, concepts, words, and images to produce evidence, the photovoice approach helps to improve the understanding and transfer of information. This method is an innovative way to generate data in a cross-cultural study, i.e. multilingualism, and reach a marginalised population, i.e. people with low health literacy. What is Photovoice? Photovoice is participatory action research (PAR) that allows research participants to record their experiences by putting cameras into their hands, and empowering them to bring about social change1. Through public forums and/or displaying their photographs, social change can be achieved through critical discussion about issues related to the photographs people have taken with policymakers and the community1. Reflections and Challenges A new method and the need for adaptations Image A participant and the researchers taken during RESPIRE Annual Scientific Meeting 2019 in Kuala Lumpur. From left: Ms Hanum, Professor Pinnock & Dr Salim Photographs taken by people with limited health literacy provided a creative space for them to narrate their experience of living with asthma through a nonverbal medium in our study. I adapted the methodology to account for two important factors: limited health literacy and multilingualism. Collaborations between researchers and participants were made possible by modifying the Photovoice method to conform to local needs and be sensitive to local cultural context. Photovoice is a relatively new research method in Malaysia, so I presented this concept to the Patient and Public Involvement (PPI) members of RESPIRE Malaysia (including the infographics and materials to conduct this study). They were initially concerned about this novel research method, ethical concerns about privacy, and people's willingness to share photographs of their lives with others. Despite these reservations, there was general agreement that this is an exciting method for uncovering subjective experiences of people living with asthma in Malaysia, particularly the cultural aspects of these experiences. I am excited to share the results of this study at a later date. Giving a voice to those unheard A feature of the classic Photovoice methodology is the final public exhibition of selected photographs. However, in a culture unaccustomed with PPI involvement, I was concerned that asking participants to stand by their photographs would be an intimidating task, even if they agreed to do so. So, instead of a public exhibition, I set-up a small-scale exhibition during RESPIRE’s annual scientific meeting in Malaysia. I stood with a participant and introduced the participant to the attendees (all colleagues from the Global Health Research Unit and local stakeholders). An accompanying booklet was created to explain the photographs being exhibited, which helped the participant in responding to questions about photographs which did not belong to her. Despite the initial concerns, the exhibition was a success, and the participant enjoyed the experience of representing the voices of people living with asthma (see quote below). Reassured by this experience, future events, particularly in low-and-middle-income settings (LMIC), should support participants to present their photos and communicate their ideas to the public. Formal training for such a public exhibition may help empower people with less confidence. “I feel overwhelmed, when I was invited. The doctors asked me; ‘can you tell me the story about this photo?’ Initially, I was afraid I will feel small or people make fun of me. But, I was surprised I don’t feel that way. For the first time, I think people want to hear what I’m saying” 37-year-old stay-at-home mother Cultural lens: Uncovering asthma misconceptions Image Traditional asthma remedies used in Malaysia World Asthma Day 2021's theme is uncovering asthma misconceptions, such as asthma only being controllable with high-dose steroids. In Malaysia, many of these misconceptions are commonly found, but I also discovered cultural norms and practices that dictate how asthma can be controlled. In the image, there are some photographs which were taken by the participants around the home, and traditional remedies commonly used for asthma symptoms in Malaysia and may be relevant in other LMICs. Understanding and recognising cultural norms and practises in asthma care delivery is critical for encouraging open dialogue with patients and improving doctor-patient relationships in the future. Hani's study Find out more about Hani's PhD study Hani's PhD profile Reference 1Wang, C., & Burris, M. A. (1997). Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health Education & Behavior, 24(3), 369-387. doi:10.1177/109019819702400309 Publication date 04 May, 2021
