Asthma-related stigma across the life course: A qualitative study of older adults with asthma

Technical Summary: Asthma-related stigma across the life course

Problem Statement
While asthma is a prevalent chronic condition with effective pharmacological treatments, suboptimal adherence remains a persistent challenge, particularly among older adults. Existing literature conceptualizes asthma-related stigma primarily as situational or episodic (e.g., embarrassment over public inhaler use) and often treats it as a discrete event rather than a longitudinal process. Furthermore, there is a significant gap in understanding how stigma operates within older adults, a demographic that has lived through decades of shifting social norms and medical advancements. Current research frequently fails to operationalize intersectionality, examining factors like age, gender, and culture in isolation rather than as interacting influences. Consequently, the mechanisms through which stigma is accumulated, internalized, and reinterpreted over a lifetime—and how these processes impact identity and self-management in later life—remain underexplored.

Methodology
This study employed a qualitative design grounded in Interpretive Phenomenological Analysis (IPA), situated within constructivist and interpretivist paradigms. To address the temporal dimensions of stigma, the researchers integrated IPA with a life course perspective and narrative analytic techniques.

• Participants: Six older adults (aged 57–86 years) living with asthma in South-East Melbourne, Australia. The sample included four men and two women, recruited via purposive, convenience, and snowball sampling.
• Data Collection: Data were gathered through a series of in-depth, semi-structured interviews (average duration 76 minutes) supported by life history mapping. Participants constructed timelines of significant life events and health transitions to facilitate recall and reflection across decades. Each participant underwent an initial interview followed by up to three follow-up sessions to deepen emerging themes.
• Data Analysis: The analysis followed a dual approach:
  1. Idiographic Engagement: Detailed coding of individual cases to preserve narrative integrity.
  2. Cross-Case Synthesis: Identification of shared patterns and divergences.
  3. Narrative Integration: Examination of narrative arcs, turning points, and the retrospective reinterpretation of early experiences in light of later life perspectives.
     The team utilized a reflexive approach, with researchers maintaining journals and engaging in iterative discussions to challenge and refine interpretations.

Key Results
The analysis revealed that asthma-related stigma is not merely episodic but is a cumulative, life-course process organized through the management of illness visibility.

1. Learning Stigma (Early Life): Participants described early encounters with disbelief, exclusion, and the framing of asthma as a sign of weakness or psychological fragility, particularly in school and sporting environments. These interactions taught participants that visible symptoms or medication use carried social risks, establishing an early awareness of the need to manage difference.
2. Embedding Stigma (Adulthood): Early lessons became embedded within identity and social relationships. Concealment evolved from a deliberate act into a routinized, often unexamined practice. Participants engaged in "identity work" to appear "normal," avoiding the use of inhalers in public, delaying treatment, and withholding diagnosis from colleagues to preserve professional credibility and social belonging.
3. Reworking Stigma (Later Life): While medical advancements and increased public awareness allowed some participants to reframe their condition positively, the underlying logic of visibility management persisted. Even with improved knowledge, many continued to conceal symptoms or manage medication use privately. Stigma was not resolved but reinterpreted; earlier patterns of concealment continued to shape self-management behaviors, often at the expense of optimal adherence.
4. The Organizing Logic of Visibility: The central mechanism through which stigma was negotiated was the management of visibility. Participants actively regulated when, how, and to whom their asthma was made visible (through symptoms like wheezing or the use of inhalers). This regulation was driven by a desire to avoid being perceived as weak or different, linking social identity preservation directly to health behaviors.

Key Contributions

• Reconceptualization of Stigma: The study shifts the understanding of asthma-related stigma from a series of discrete, situational events to a cumulative, temporally situated process. It demonstrates how stigma is learned, internalized, and normalized over decades.
• Methodological Integration: The paper demonstrates the utility of combining IPA with life-course and narrative methods to examine how meanings are constructed, sustained, and reworked across the lifespan. This approach captures the retrospective sense-making processes that cross-sectional studies miss.
• Visibility as a Mechanism: The research identifies the management of visibility as the central organizing logic of asthma stigma. It extends existing frameworks by showing that visibility is not just a static characteristic of the condition but an actively managed, dynamic process that links identity, behavior, and social context.
• Older Adult Perspective: By focusing on older adults, the study highlights how generational contexts (e.g., growing up when asthma was poorly understood) continue to influence current health behaviors and identity, even amidst modern medical advancements.

Significance and Claims
The authors claim that their findings offer a more nuanced understanding of why non-adherence occurs, suggesting that what is clinically interpreted as poor adherence may often be the outcome of long-standing strategies to manage social stigma. The study argues that stigma in asthma is produced through interactions between historical narratives, social norms, and institutional practices, rather than residing solely within the individual.

The paper posits that addressing asthma care requires moving beyond biomedical models of adherence to include stigma-sensitive approaches. This involves:

• Clinicians recognizing that concealment strategies are often rooted in identity preservation rather than simple non-compliance.
• Healthcare providers engaging in conversations about patients' comfort with medication visibility and prior experiences of judgment.
• Public health interventions that challenge enduring social narratives linking asthma to weakness and work to normalize symptoms and treatment in everyday settings.

Ultimately, the study concludes that recognizing the role of visibility and identity across the life course is critical for improving engagement with treatment and quality of life for older adults with asthma.