Thesis Disenfranchising Talk and Communication Work of People with Chronic Overlapping Pain Conditions, 2024, Quaack

https://repositories.lib.utexas.edu.../c5af7977-1b63-4f10-9fdc-5e2887cb5e8f/content

Abstract

Disenfranchising Talk and Communication Work of People with Chronic Overlapping Pain Conditions

Karly Quaack, Ph.D.

The University of Texas at Austin, 2024
Supervisor: Erin Donovan


This dissertation explores important unanswered questions regarding interpersonal communication among individuals coping with chronic overlapping pain conditions. Specifically, in this study I examine how individuals with one or more chronic overlapping pain conditions (COPCs), such as fibromyalgia, experience negative talk from healthcare providers, and then I investigate the implications of that talk.

Previous research has demonstrated that people with chronic overlapping pain conditions often endure negative talk from medical providers who question and/or contest the reality of their identity and illness experience, which can impose constraints on patients’ ability to carry out the communication work necessary to manage their pain (Hintz & Suk, 2023; Thompson et al., 2023). Therefore, the present study also seeks to further clarify the associations between disenfranchising talk, the consequences of this talk, communication work, and subsequent health outcomes such as patient quality of life. Lastly, this study investigates the potential influence of perceived social support on these associations. This project is guided by two complementary, newly developed communication frameworks: The Theory of Communicative Disenfranchisement (Hintz & Wilson, 2021; Hintz et al., 2023), and the Integrative Theory of Communication Work (Donovan & Hazlett, 2023). Results from a cross-sectional online survey of 296 American adults with one or more chronic overlapping pain conditions demonstrated that disenfranchising talk from medical providers was positively associated with COPC patients reported proximal consequences of that talk in terms of threats to their agency, credibility, and rights/privileges. Contrary to the researcher’s predictions, disenfranchising talk was not associated with patients’ quality of life. Moreover, COPC patients’ perceptions of social support did not moderate the indirect effect between disenfranchising talk and QOL through PCs. The findings from this study also indicated that disenfranchising talk was positively associated with all aspects of communication work (i.e., effort/burden, preparing and planning, divisible labor, and duties/obligations). Lastly, the results indicated that the negative indirect effect of DT on QOL through PCs becomes weaker as communication work increases.

The findings of this study contribute to a growing body of health communication research on disenfranchising communicative experiences during chronic illness and also lend credibility to/extend existing theoretical perspectives of communication work.

 

Table 3.2. COPC Conditions
n %
Irritable Bowel Syndrome (IBS) 104 15.6%
Endometriosis 44 6.6%
Temporomandibular Joint Disorders
(TMD/TMJ)
58 8.7%
Chronic Low Back Pain 170 25.4%
Chronic Fatigue Syndrome (ME/CFS) 45 6.7%
Fibromyalgia 61 9.1%
Chronic Tension Type Headache 67 10.0%
Interstitial Cystitis/Painful Bladder Syndrome 14 2.1%
Chronic Migraine 91 13.6%
Vulvodynia 14 2.1%
Note. Percentage totals exceed 100% because participants were given the option to
select multiple chronic overlapping pain conditions relevant to them.

 

I can relate to this: a newly developed scale by the author and colleagues: from page 176 of Quaak's pdf Phd thesis:


APPENDIX G: COMMUNICATION WORK SCALE
Communication Work Scale
Communication Work (Donovan, Wang, Quaack, 2024)
12 items
1-3: Effort/Burden
4-6: Preparing and planning for communication
7-9: Obligations/duty
10-12: Division of Labor
Instructions: Please indicate your level of agreement to the following statements as they
pertain to your chronic pain condition(s):
1 = Strongly disagree
2 = Disagree
3 = Somewhat disagree
4 = Neither agree nor disagree
5 = Somewhat agree
6 = Agree
7 = Strongly agree

1. I have frequently found it tiring to discuss my health or illness with others.
2. I have found it exhausting to constantly inform others about my health.
3. I have found it emotionally draining to discuss my health issues
4. Before doctor’s appointments, I have often planned what I am going to say
5. I have reviewed and revised what I aim to discuss
6. I have rehearsed my conversations ahead of time
7. I have felt obligated to answer people’s questions
8. I have felt the need to communicate about my health in the “right way”
9. I have felt obligated to act like my ideal self when discussing my health
10. I have requested others to help me research health information
11. I have asked someone else to update others about my health
12. I have requested someone to share news about my health with others.