Everyday managing and living with autoimmune Addison's disease: Exploring experiences using photovoice methods

People with rare diseases are a minority group that faces risks for healthcare and work inequities because knowledge and resources on how to systematically support health or working life are limited. Integrating voices of persons living with rare diseases are an important aspect in inclusive and relevant healthcare practices. This study sought to actively involve persons with autoimmune Addison's disease (AAD), a rare condition, in exploring challenges and possibilities situated in everyday life. Photovoice methods were utilized to incorporate experiences through photographic documentation and group discussions with five persons over seven weeks. Data generated from group sessions were visually analyzed or transcribed and analyzed with thematic analysis. Five themes emerged: Individual and fine tuning in everyday life; It is not how it was; The power of knowledge and support; Becoming the expert in an uncertain context; and, Finding balance and paving new ways. The findings showed that everyday life with AAD was more complex than earlier portrayed; entailing several barriers and negotiations. In order to meet the needs of persons with AAD, more extensive and relevant information, support and self-management education is needed. Moreover, a complementary focus on everyday life to promote their health and wellbeing is also important.