Living with Severe Asthma: A Self-Determination Theory Perspective

Severe asthma affects around 3-10% of the asthma population. Whilst most severe asthma research has been devoted to understanding pathophysiology, biomarkers and testing novel treatments, there is a dearth of research focusing on patients’ experiences of self-management of severe asthma. To improve health outcomes for patients with severe asthma, treatment guidelines emphasise the importance of patient-centredness, shared decision making and self-management. Research has demonstrated that understanding people’s attitudes, beliefs and values can impact behaviours and health outcomes. Greater attention is needed to understand the patients’ experiences and perspective of living with this condition, which may shape opportunities for directing patient-centred health interventions. Self-determination theory represents a broad framework to explain health related behaviours and motivation on an individual level. According to this theory, people have three basic psychological needs: autonomy, competence and relatedness. Drawing on these constructs a qualitative research design was used to investigate lived experiences and behaviours from the perspective of people living with severe asthma. Collectively, the findings provide new understandings of the lived experience of severe asthma and show the current biomedical approach to supporting patients is disconnected from the experiences narrated by participants

"This illness diminishes me. What it does is like theft" : A qualitative meta-synthesis of people's experiences of living with asthma

ACKNOWLEDGEMENTS This review was funded through a Seed Grant from the Centre for Research Excellence in Severe Asthma, Australia. The Healthtalk resources included in the systematic review were produced by two of the co-authors on the systematic review (SK and LL). LL is supported by NIHR Oxford Biomedical Research Centre.Peer reviewedPublisher PD

The impact of severe asthma on patients’ autonomy: a qualitative study

Background People living with severe asthma may have ongoing debilitating symptoms despite high‐dose treatment. Clinical guidelines for severe asthma recommend concepts such as patient centeredness, shared decision making and self‐management, at the heart of which lies autonomy. Objective This study aimed to explore the role of autonomy in patients’ narratives about their experiences of living with and managing severe asthma. Methods In‐depth semi‐structured interviews were video‐ and/or audio‐recorded and transcribed. Data were categorized using a hybrid approach to analysis incorporating both inductive and deductive methods, informed by the self‐determination construct of autonomy. Analysis and comparison across and within categories were conducted to develop final themes. Results Twenty‐nine face‐to‐face interviews, lasting 1.5‐4 hours, were conducted across Australia. Patients’ autonomy was enacted or challenged in a range of situations, such as interacting with health‐care providers, maintaining employment, managing symptoms, and dealing with threats to self‐identity. Two main themes were discerned from the analysis: (a) the desire to live an “unconstrained” life; and (b) preservation of self‐identity. Conclusion Our findings suggest that autonomy is broader than conventional medical concepts such as decision making and information seeking. Future research should consider these findings when developing and implementing patient‐driven self‐management interventions for those living with severe asthma

“…I’ve said I wish I was dead, you’d be better off without me”: a systematic review of people’s experiences of living with severe asthma

Objective: Our aim was to conduct a systematic review and synthesis of qualitative evidence exploring the lived experience of adults with severe asthma. Data sources: We searched MEDLINE via OvidSP, PsycINFO via OvidSP, PubMed, CINAHL, EMBASE, Sociological Abstracts, Google Scholar, the journals Qualitative Health Research and Qualitative Research, and a study of experiences of living with asthma by the Health Experiences Research group. Study selections: Studies were included if they used qualitative methods and explored the subjective experiences of adults (≥18 years) with a clear diagnosis of severe asthma. Results: From 575 identified studies, five met the inclusion criteria. Synthesis revealed an overarching theme of efforts that people living with severe asthma engage in to achieve personal control over their condition. Individuals ‘strive for autonomy’ through dealing with symptoms and treatment, acquiring knowledge, making decisions and reclaiming identity. Conclusion: This systematic review found a paucity of qualitative studies reporting on people's perspectives of living with severe asthma, and a focus on clinical rather than personal issues. Our synthesis reveals that severe asthma was disempowering, and a threat to identity and life roles. What was important to people living with severe asthma was striving to achieve a greater level of personal control over their condition, but these efforts received little support from their healthcare providers. Thus, more attention should be paid to understanding the self-management strategies and personal goals of people living with severe asthma. This may assist in designing interventions to better support patient self-management and improve health outcomes

Living with severe asthma: the role of perceived competence and goal achievement

Objective: The overall aim of this study was to examine, among individuals living with severe asthma, the role of perceived competence in achieving their goals. Methods: Qualitative research methods were used to conduct in-depth semistructured interviews. Interviews were video and/or audio recorded, transcribed and analyzed inductively and deductively, informed by the self-determination theory construct of perceived competence. Thirty-six face-to-face interviews, lasting 1.5–4 h, were conducted across Australia. Results: Feeling competent to achieve asthma goals played a role in participants’ ability to achieve broader goals. Their desire to achieve their broader goals was strongly driven by their perceived ability to master managing their condition, which at times required more than medical strategies. Two main themes were discerned from the analysis: (1) learning how to look after yourself: selfcare is important and (2) reaching an agreement with severe asthma: being at one with the illness. Discussion: This study highlighted the influence of perceived competence on self-management and goal achievement in severe asthma. Healthcare providers could explore patients’ perceived competence to set and achieve goals, as a self-management strategy. Future research should consider these findings when developing and implementing patient-driven, self-management interventions for those living with severe asthma