Daniela Eassey1, Helen K Reddel2, Kath Ryan3, Lorraine Smith1. 1. School of Pharmacy, Faculty of Medicine and Health, University of Sydney , Sydney , NSW , Australia. 2. Woolcock Institute of Medical Research, University of Sydney , Sydney , NSW , Australia. 3. School of Pharmacy, University of Reading , UK.
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.
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.
Entities:
Keywords:
Severe asthma; experiences; qualitative; relatedness