Exploring experiences of people living with chronic respiratory disease (CRD) in Malaysia: an adapted Photovoice study

Introduction: Awareness of CRD remains low in low- and middle-income countries (LMICs), with limited data on their burden. Community understanding of CRD and its impact on quality-of-life and burden of care is poorly explored. Photovoice, a participatory method, enables individuals to share their experiences through photographs, offering valuable insights into unmet needs and challenges. Objectives: We aimed to understand the experiences of people living with CRD in Malaysia using the Photovoice approach. Methodology: Adults living with CRD were recruited for an adapted Photovoice study. Participants engaged in initial qualitative interviews, followed by training sessions and a photo-taking activity. Those who successfully captured photographs participated in one-to-one Photovoice interviews, where images served as prompts for discussion. Interviews were audio-recorded, transcribed, and analysed thematically. A community photo-exhibition raised awareness about living with CRD. Results: Fourteen participants (seven men and women) with asthma, COPD, or lung cancer, were recruited from primary care clinics in Klang District, Malaysia. Four themes emerged from the analysis: 1. Living with CRD: Participants’ photographs depicted the physical, emotional, and social impacts of CRD on day-to-day life. Photographs of staircases, and isolated spaces highlighted physical limitations and social isolation. 2. Social and environmental influences: Family members featured prominently, symbolising the importance of social support. Environmental triggers were portrayed through photographs of hazy skies and monsoon rain. 3. Behavioural and lifestyle adjustments: Emotional themes like anxiety and resilience were reflected in symbolic imagery like crowded parks and serene beaches. 4. Aspirations and resilience: Coping strategies included using inhalers, dietary changes, and adapting to environmental challenges. Discussion: Photovoice empowered participants to express their experiences, offering a nuanced understanding of the multifaceted burdens of CRD. The findings highlight the need for increased awareness, supportive policies, and tailored interventions to enhance the quality of life for people living with CRD in Malaysia. Funding: NIHR132826. This research was funded by the UK National Institute for Health and Care Research (NIHR) (Global Health Research Unit on Respiratory Health (RESPIRE); NIHR132826) using UK aid from the UK Government to support global health research. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the UK Government.