Take my breath away: The role of social norms and power in promoting wellness within a system of care for people with chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is the leading cause of death and disability worldwide and the fourth leading cause of death in the United States (NIH, COPD National Action Plan, 2018). The sheer number of people impacted by COPD calls for a response from local systems of care to help address the needs of people with COPD and to work towards greater wellness. To understand the role of systems in addressing COPD, the current project aims to reveal how power and social norms shape a local system of care for people living with COPD. We draw from systems theory to conceptualize how systems are structured as well as how systems function. Specifically, the current study is grounded in Foster-Fishman, Nowell, and Yang’s (2007) framework for transformative systems which aims to understand systems, define social problems nested within systems, and to identify levers for changing systems to be more equitable. To work towards these aims, we conducted qualitative interviews with 13 people with a COPD diagnosis and/or who identify as caregivers for people with COPD. Our guiding research questions focused on how individuals experience the local system of care and what their experiences reveal about power and social norm with a focus on voice, autonomy, and financial toxicity. Additionally, we were interested in the role of the Covid-19 pandemic as a context of stress given that interviews were conducted during the pandemic before a vaccine was available. Overall, focusing on individuals within a local system holds potential to reveal how power and social norms function and how they might impact participant well-being from the perspective of the people most impacted by the system of care. For analysis, we conducted modified grounded theory following Charmaz’s constructivist grounded theory framework (Charmaz, 2006). This grounded theory framework fits within a critical ideological and constructivist paradigm and therefore was a nice fit for this project’s aims. Additionally, grounded theory provides a theoretical framework for qualitative analysis as well as a process for systematically engaging with research questions. In line with Charmaz’s framework, we completed memos throughout the research process in the spirit of reflection and to document findings and emerging analysis. Our coding consisted of line-by-line, focused, and axial codes and required an iterative and collaborative process where the entire research team participated actively. This analysis resulted in a set of findings that addressed our research questions. Specifically, we were able to better understand the various parts of the local system of care for people with COPD (e.g., medical system, social supports, service agencies) as well as interactions between parts of the systems. We also were able to describe how social power operates within the local system of care, for example who held power within the local system of care to allocate resources and to decide what resources should be available. Likewise, we note the many skills required for accessing resources within the system of care as well as the types of supports that make accessing those resources more likely. Finally, we identify key social norms that impact wellness within the system of care. We organize these social norms by themes which included medical model of disability, medical settings, response to chronic illness, isolation, and awareness of aging. Throughout, we discuss the many ways in which power and norms were connected. Overall, our findings illustrate the dynamic relationship between power and social norms as well as how power and social norms can create, sustain, and at times even work against wellness. Overall, the experiences of people with COPD and their caregivers suggest an intricate system of care that shapes people’s health and wellbeing.

Name thesis:degree_name

Ph.D.

Level thesis:degree_level

Dissertation

Discipline thesis:degree_discipline

Psychology

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2022

Author dc:creator

• Bergmann, Brett Ashley Boeh

Contributors dc:contributor

• Todd, Nathan R
• Aber, Mark
• Allen, Nicole
• Aref, Mike
• Lara-Cinisomo, Sandraluz

• wellness
• power
• social power
• norms
• social norms
• systems
• system of care
• COPD
• chornic obstructive pulmonary disease
• health equity
• community psychology
• structural
• justice

Statement dc:rights

• Copyright 2022 Brett Bergmann

Language dc:language

en, eng

Handle dc:identifier

https://hdl.handle.net/2142/116133

OAI record oai:identifier

https://www.ideals.illinois.edu/oai-pmh?verb=GetRecord&metadataPrefix=etdms&identifier=oai%3Awww.ideals.illinois.edu%3A2142%2F116133