Barriers to belonging: the need for relatedness amongst people living with severe asthma

Abstract

Background Severe asthma, that is, asthma that is relatively refractory to conventional therapy, affects 3-10% of the asthma population. It is associated with a significant burden affecting social and working life. Supporting the need for relatedness facilitates health behavior change and improves overall well-being. However, this has not been closely examined from the patients’ perspective. This study examines relatedness in patients’ narratives about their experiences of living with and managing severe asthma. Methods Rigorous and systematic qualitative research methods were used to conduct in-depth semi-structured interviews. Participants were included if they were ≥18 years old and diagnosed with severe asthma. Interviews were video and/or audio recorded, transcribed, and analyzed inductively and deductively informed by the self‐determination theory construct of relatedness. Thirty-eight face-to-face interviews, lasting 1.5 - 4 hours, were conducted around Australia. Results Our findings show that living with a debilitating and unpredictable illness challenged participants’ sense of relatedness. Two themes emerged: 1) the desire to be understood: feeling isolated and 2) the desire to be accepted: ‘I’m supposed to be like everybody else’. For people living with severe asthma, feeling cared for, understood, connected to others and having a sense of belonging was valued. Their overall psychological well-being was dependent upon their sense of connection to others. Conclusion Future research should consider our findings of the challenges faced to preserve their sense of relatedness, when developing and implementing patient‐driven self‐management interventions for those living with severe asthma.