Surviving and thriving: an integrated critical theory of chronic pain from stories of urban American Indians living with chronic pain

This study seeks to inform better care practices and policies for American Indians living off-reservation by discerning relationships between chronic pain and colonization and developing an integrated critical theory of chronic pain. Methods: This study uses a concurrent transformative mixed methods design with in-depth interviews and a survey (n=40) from self- identified American Indian adults in Indiana, Chicago, and Tulsa who report pain for greater than 3 months. The in-depth interview elicits participants’ stories of their pain, including pain characteristics, origin, treatment, and daily life experience. The survey battery consists of a demographics questionnaire, McGill Pain Questionnaire (Melzack, 1975), Historical Loss Scale (Whitbeck, Adams, Hoyt, & Chen, 2004), Texas Revised Inventory of Grief (Faschingbauer, 1981), Resilience Scale (Wagnild & Young, 1987), Stressful Life Events Screening Questionnaire (Goodman, Corcoran, Turner, Yuan, & Green, 1998), and questions regarding use of traditional and biomedical healing practices. Interviews were iteratively coded with a grounded theory approach. Statistical analyses include correlation, Chi-Square, and binary logistic regression. Results: A number of dichotomies arose from the data: good and bad days with pain, things that help pain and things that make pain worse, and pain with a physical etiology and with an emotional etiology. This fragmented conceptualization of pain provides participants with sought-after legitimacy to guard against the many places of tension and conflict in their lived experience of chronic pain. Connections between chronic pain and colonization occur at the level of abuse, poverty, and sorrow. Despite the fragmentation of pain conceptualization and the tensions and conflicts that being in chronic pain causes, participants manage their pain with very integrated care. On average, participants utilize almost 7 different healing practices, demonstrating the active role they take in caring for their chronic pain. Participants call upon strength from understanding that American Indians as peoples have always survived to bolster their individual strengths, push through the pain, and keep on living using self-care practices that demonstrate remarkable resilience. They seek to function without further debility and to maintain their economic, spiritual, social, and physical wellness. This is care for survival not care for cure. Conclusion: In an Equilibrium Model of Chronic Pain, which emerges from this research, surviving on the worst days with chronic pain balances in a steady state with thriving on the best days with chronic pain, while self-care practices catalyze the relationship. Ultimately this research found that chronic pain theory needs to tell more profound, critical, and world–changing stories; research methods in American Indian communities need to uncover more complete and powerful stories; and healthcare providers for marginalized populations need to spend time attending to stories in overcoming patient barriers to treatment, adherence, and full thriving.

Name thesis:degree_name

Ph.D.

Level thesis:degree_level

Dissertation

Discipline thesis:degree_discipline

Sociology

Grantor

University of Illinois at Urbana-Champaign

Year dc:date

2017

Author dc:creator

• Duwe, Elise Ann Geist

Contributors dc:contributor

• Kelley, Margaret S
• Zerai, Assata
• Harjo, Joy
• Mendenhall, Ruby

• chronic pain
• Indigenous health
• illness experience

Statement dc:rights

• copyright 2016 Elise Ann Geist Duwe

Language dc:language

en

Handle dc:identifier

http://hdl.handle.net/2142/95434

OAI identifier oai:identifier

oai:www.ideals.illinois.edu:2142/95434