Background Ankylosing Spondylitis (AS) is characterized by inflammation and leads to recurrent deep pain and stiffness in the lower back, spine and neck. Available research about AS are mainly focused on medical treatment, clinical trials and the development of the disease. Patients with AS have significantly reduced quality of life (QoL), both compared to sex-and age-matched healthy population and compared to other patients with chronic diseases. Consequently, patients with AS need to learn to live with limited physical activity and affected QoL. Few studies illuminate the subjective aspects of AS such as patients' perspective on living with AS. AS affects men 2/3 times more often than women. Therefore, there is a specific need to focus on how men with AS adapt to this chronic disease.
Objectives To develop an understanding of how men experience Ankylosing Spondylitis and the challenges related to living with AS a chronic disease.
Methods A qualitative interview study was conducted. A purposive sample of 13 men diagnosed with AS mean age 44 (range 32-58) was recruited from a rheumatology outpatient clinic. Duration of disease was mean 12.6 years (range 0.3-28 years) and time from first sign before final diagnosis was mean 7.4 years (range 2-20 years). Semi-structured interviews were conducted using a thematic interview guide to describe men's experiences having AS. The interviews were analysed using content analysis inspired by Graneheims qualitative methodology. A patient was a research partner involved from the very first beginning of the study. He validated the study design from a patient perspective, qualified the scientific idea and participated throughout the entire scientific process. His experience as a male patient added a unique perspective to the study.
Results The analysis revealed four categories: (1) Approaching a diagnosis referring to men describing how it was to live with first signs of AS. Being diagnosed was related to both relief and sadness. (2) Ill in a social context referring to the importance of staying in existing close relations, but also painful experiences related to limitations in the role as a father. (3) Being challenged as a man referring to their perception of being a man and their masculinity being challenged. (4) The importance of remaining bodily well referring to the significance of being physically active, which helped the men to endure e.g. pain. Due to both the diagnosis and to the medical treatment it became important for them to strive to remain bodily well as a man. On the basis of these categories, an overall category emerged: “An invisible companion for life” covering the overall experiences of living with an invisible disease for good.
Conclusions This qualitative study demonstrates that AS has a great impact on men's perception of themselves being a man, their relationships as partner and as father, their social life and their masculine identity. The study has implication for future health promoting interventions. Interventions aiming to stabilise male AS patients QoL with targeted support to accept more vulnerable dimensions of a life with a chronic disease, to encourage them to remain to their masculine bodily identity as well as support to the entire family.
Disclosure of Interest None declared