Living With Antiphospholipid Antibodies: A Photovoice Exploration

The diverse manifestations of antiphospholipid syndrome (APS) and antiphospholipid antibodies (aPLs) exert substantial but poorly understood impacts on the lives of those affected. This study explores the lived experiences of individuals with APS/aPLs using an innovative photovoice (a participatory visual‐narrative qualitative research method) exercise. Patients aged ≥ 18 years with APS per the Revised Sapporo criteria or with ≥ 1 positive aPL on ≥ 2 occasions without thrombosis or pregnancy morbidity were recruited from a Canadian multidisciplinary SLE/APS clinic. Over 2 weeks, participants took photos to represent what APS/aPLs means to them, impacts on daily life, and factors that impact how they manage APS/aPLs. Photos were shared and discussed in focus groups. Eleven individuals with APS/aPLs participated; 54.5% had APS with SLE, 27.2% had APS without SLE, and 18.2% had aPLs with SLE. Mean (SD) age was 46.4 (15.6) years, and 90.9% were female. Participants shared 49 photos: images depicted the healthcare journey ( n  = 19 photos), the participant themselves ( n  = 8), activities that contribute to wellbeing ( n  = 7), friends and/or family ( n  = 5), emotional impacts ( n  = 4), travel ( n  = 3), and other challenges ( n  = 3). Participants emphasized the emotional impacts of living with APS/aPLs, particularly related to healthcare experiences, physical symptoms, family planning, and altered interactions with the people, activities, and places enjoyed prior to an APS/aPLs diagnosis. Participants shared how the challenges of the APS/aPLs healthcare journey (e.g., management behaviors, healthcare experiences) exert a substantial psychosocial burden. The use of photography accompanied by narrative provided participants the autonomy to shape the focus groups, eliciting a more complete picture of the APS/aPLs lived experience. Results increase our understanding of the social, emotional, and lifestyle impacts experienced by individuals with APS/aPLs and will inform the development of patient resources and healthcare practices that better meet the needs of those affected.