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

Building Partnerships: The Global Health Initiative and Njala University

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Suffering Like a Broken Toy: Social, Psychological, and Cultural Impacts for Urban American Indians with Chronic Pain

This paper will explore the difficult conversations and places of tension in the lived experience of chronic pain for urban American Indians from a larger study discerning relationships between chronic pain and colonization. A concurrent transformative mixed methods design with in-depth interviews and a survey was used for the larger study. This paper concerns only the qualitative data. Forty self-identified American Indian adults living in Indiana, Chicago, and Tulsa who reported pain for greater than three months provided their chronic pain illness experiences for this paper. The paper uses three data-derived themes to encompass the broad reaching social, psychological, and cultural suffering inherent in coping with chronic pain: invisibility, psychological peace, and warrior strength. American Indian chronic pain sufferers in this study struggle with the multiplicative invisibility of both their chronic pain and their native identity. The invisibility leads to passing as white in environments hostile to people of color. It also results in family disconnection, loneliness, and isolation. In order to survive socially-mediated assaults, American Indian chronic pain sufferers keep their psyche at peace through stress management, cultural engagement, and non-negativity. They also call upon warrior strength—their understanding that American Indians as peoples have always survived bolsters their individual strength to push through the pain. They seek to function without further debility and to maintain their economic, spiritual, social, and physical wellness. Ultimately the participants in this research tell a profound, critical, and world-changing story that requires attention in overcoming barriers to full thriving with chronic pain

Prescribing Providers Estimate Patients’ Adherence to Hypertension and Type 2 Diabetes Medications from Patients’ Medication-Taking Routines: an Observational Study

Patient non-adherence to medications functions as a key mediator between medical practice and patient outcomes, occurring in 20–50% of patients.1 One point of intervention is the medical encounter.2 However, providers are hesitant to ask about non-adherence, which leads to poor prescribing decisions and missed opportunities for addressing non-adherence.3 Direct questions about non-adherence are not ideal, as they elicit “socially desirable” responses and are subject to poor recall.4 We explore the potential benefit of asking about patients’ medication-taking routines/habits for estimating adherence. This approach may avoid problems associated with direct questions—patients may not be able to accurately reflect on or want to report specific instances of forgetting a pill, but could describe a “typical daily routine.” Further, patients’ behavioral habit strength (automaticity in taking medication) predicts adherence more strongly than commonly assessed cognitive predictors (e.g., beliefs5). Therefore, if providers get a sense of the stability of a patient’s routine, they may be able to predict that patient’s adherence. We present data from prescribing medical providers, who used real patients’ direct reports of non-adherence and descriptions of their medication-taking routines to estimate patients’ objective adherence. We hypothesized that providers’ adherence estimates based on patients’ medication-taking routines would be equally or more accurate than their adherence estimates based on patients’ direct reports of non-adherence.This article is published as Phillips, L.A. & Duwe, E.A.G. Prescribing Providers Estimate Patients’ Adherence to Hypertension and Type 2 Diabetes Medications from Patients’ Medication-Taking Routines: an Observational Study. J GEN INTERN MED (2019). doi: 10.1007/s11606-019-05054-y. Posted with permission. </p

Promoting Comprehension of Health Information among Older Adults

Understanding and acting on online health information is increasingly a pre-requisite for patient self-care. Therefore, inadequate health literacy is a barrier to self-care among older adults with chronic illness. The goal of our study was to improve older adults’ comprehension of online health information. We extracted typical health texts from multiple credible health websites, and systematically improved the texts in terms of, content, language, organization and design. Results showed that older adults better understood the revised passages than the typical ones, in terms of their reading efficiency (time per unit of information uptake). Intervention benefits were greater for older adults with more domainspecific health knowledge, suggesting that knowledge facilitated the comprehension of health information in the revised texts. Implications for promoting older adults’ comprehension of health information are discussed