Characterising experiences with acute myeloid leukaemia using an Instagram content analysis

Instagram has more than one billion monthly users, which presents a unique research opportunity particularly in rare diseases or hard to reach populations. This study focuses on acute myeloid leukaemia, a rare haematological malignancy and aims to characterise who posts acute myeloid leukaemia-related content and the type of content created. The findings can provide information and a method for future studies, particularly those focused on online or social media based interventions. Acute myeloid leukaemia-related Instagram posts were identified by searching specific and relevant hashtags (#). A content analysis systematically classified themes in the data. A convenience sample of 100 posts (138 photos) were manually extracted and coded. Data are described using descriptive statistics and demonstrated by qualitative examples. The most frequent users in our sample were patients (66%), patient support networks (24%) and professional organisations (10%). Patients who were communicating their health update (31%) were the most frequently posted content and 25% of these posts described a symptom experience. Our findings demonstrate that patients and their support networks are frequenting Instagram and therefore may be able to receive and benefit from tailored intervention, however there is an identified gap in health-organisations participating in this virtual online community.