“I would love to talk to someone that actually understands”: Psychosocial experiences of adults with Fanconi anemia

Abstract

Fanconi Anemia (FA) is a rare disease characterized by bone marrow failure and increased cancer susceptibility. Although the adult FA population is growing due to medical advancements, there has been little research on their psychosocial experiences. Participants (n = 18) completed semi-structured interviews about mental health. Additionally, participants had the option of participating in Photovoice, taking photos that represented their experiences. Conventional qualitative content analysis identified five themes, including “FA is all-encompassing,” Stigma and trauma take a toll on mental health, Connection is bittersweet, Mental healthcare barriers, and “A process of accepting the disease.” Findings indicate a need to address mental health barriers including a lack of mental health providers knowledgeable about rare disorders and FA. Social support and connections with the FA community –key protective factors– should be made more accessible to minorities and individuals outside of Westernized countries.