Browsing by Author "Humphreys, Janice"

Background. Creating health equity—“the attainment of the highest level of health for all people”— is a core tenet of public health (American Public Health Association, 2015; United States Department of Health and Human Services, 2011, p. 1). Achieving health equity requires the identification and amelioration of patterns of systemic disadvantage and the elimination of health disparities (Gostin & Powers, 2006; United States Department of Health and Human Services, 2011). To do this, health researchers must address social determinants of health (SDOH) and of equity. I have selected women with migraine as a paradigmatic case for this exploration of health equity and agency.

Migraine is a common and debilitating neurobiological disorder without a cure (Goadsby, 2012). It affects almost three times as many women as men, and disproportionately disables women occupying low social locations, that is, occupying a low position on the social hierarchy (Burch, Loder, Loder, & Smitherman, 2015b; Stewart, Roy, & Lipton, 2013). A dearth of effective and affordable treatment options has rendered non-pharmacological self-management a crucial part of living with migraine, yet clinical treatment guidelines consistently emphasize pharmacological intervention (Becker et al., 2015; Diamond et al., 2007; Raphael, 2012). Much of migraine research is epidemiological (Burch et al., 2015b; Buse et al., 2013; Lipton, Serrano, Holland, et al., 2013). The resulting gap in knowledge around the experiences and needs of women navigating the complexities of life with migraine is especially pronounced for those who are less likely or able to access systems that document and treat the condition.

Objective and Methods. The overall purpose of this dissertation is to develop knowledge on the effects of social and structural determinants on the experiences of women living with migraine, with attention to their strategies and priorities for self-management through a systems thinking lens. To do this in the context of this dissertation, I first explore the benefits of critical systems approaches for health equity research (Chapter 2), followed by a description of the development and use of two systems thinking tools for data collection in community focus groups of women with migraine (Chapter 3). Our study team used the system support map tool (SSM) to identify and describe migraine triggers and features, self-management strategies, and the needs and outcomes associated with self-management (Chapter 4). The connection circle (CC) tool explored the relationships between triggers and features, self-management strategies, and outcomes (Chapter 5).

We conducted seven focus groups with 19 women with migraine from diverse social locations and analyzed the data using qualitative content analysis, dimensional analysis, and measures of complexity. We examined variation by social location in the data from both tools.

Findings. The tools we developed allowed us to feasibly and effectively collect rich and nuanced data from community-based women with migraine. One of the tools—the CC— may be more effective when coupled with problem solving techniques when used with women in low social locations (Chapter 3).

The SSM data underscored the distinctions in migraine experience by social location (Chapter 4). While women from all social locations identified stress as a top migraine trigger, descriptions and definitions of stress varied. Women in low social locations were more likely to engage in isolating and avoidant self-management activities, and women in higher social locations were more likely to use proactive, complementary, and integrative approaches. Women in low social locations had lower expectations for self-management and were more interested in pain management than women in higher social locations, who were more interested in self-improvement.

The CC data revealed that ‘conceptualization of complexity,’ or the way and degree to which participants contemplated dynamic interrelationships, was a key dimension in understanding how women in diverse social locations identified relationships between different aspects of their migraine experiences. There were clear differences in the conceptualizations of and capacities for complexity by social location. Women in high social locations demonstrated greater depth, breadth, and structure of this key dimension than women in low social locations.

Discussion and Conclusions. As a non-fatal, but highly disabling, condition with limited and costly treatment options, migraine provides an excellent paradigmatic case for exploring health equity. Ability to have a high quality of life with migraine may be deeply entwined with one’s social location. Therefore, to improve the experiences of the group most affected by migraine—women in low social locations—we cannot limit our research and treatment to the biological and behavioral. We need to think in terms of the social and structural. Creating equitable outcomes, wherein everyone has an equal opportunity for a fulfilling and healthy life, requires that we intervene on multiple levels, engage with affected women, and explicitly commit to addressing social and structural determinants of health AND equity.

Drug-resistant tuberculosis (DR-TB) is a threat to TB control globally. South Africa has the third highest epidemic of DR-TB – following only Russia and China, two much more populous countries. South Africa has stringent guidelines for treating DR-TB; however, little is known about adherence to these guidelines. Additionally, little is known about age appropriate treatment, particularly in youth (13-24 years) who may have differing needs than adults with DR-TB. South Africa also has the world’s largest HIV epidemic – nearly 18% of the population is infected with HIV. Individuals with HIV are 26 to 31 times more likely to become infected with TB than individuals without HIV. Among individuals in South Africa with TB, there is a 57-68% HIV coinfection rate.

This dissertation includes a systematic literature review (Chapter 2) exploring barriers to TB treatment initiation in sub-Saharan Africa with an emphasis on children and youth. Additionally, time to treatment was assessed per South African guidelines (i.e. initiating treatment within five days of diagnosis) and total days from DR-TB diagnosis to DR-TB treatment initiation. This analysis included multi-level modeling with fixed patient- (sex, history of TB, HIV coinfection) and system-characteristics (urban-rural location, province) and random effects of treatment site. Guidelines were further evaluated, by assessing through descriptive statistics and logistic regression, receipt of guideline recommended care in terms of correct medications prescribed, correct dosage prescribed, and correct frequency prescribed at treatment initiation (correct regimen).

Barriers exist for all individuals with TB to initiate treatment regardless of age. These barriers are at the patient- and system-level and include: costs, health seeking behaviors, and infrastructure. More research is needed to identify barriers specifically among children and youth, as only four articles reviewed focused on these vulnerable populations. The time to DR-TB treatment is delayed for 84% of South Africans, and age did not predict delays. Seventeen percent of individuals coinfected with HIV receive care per guidelines compared to 12% of those without coinfection. Additionally, receipt of correct medications was prescribed to 88% of patients, yet only 33% received correct medications and doses, and still, only 30% received the full correct regimen. Age was not a strong predictor for receipt of correct guideline based treatment. In conclusion, more research must be focused on younger individuals with TB, particularly DR-TB. More research investigating guideline recommended care is essential to improve patient outcomes, prevent the transmission of DR-TB in communities, and to prevent further drug resistance.

Introduction: In the fourth decade of the HIV epidemic, African American women continue to be disproportionately affected by HIV across all age ranges in the U.S. African American women make up only 13% of the female population in the U.S. yet account for 64% of HIV infections among women (Aitcheson et al., 2014). African American women face multiple challenges that intersect to influence how they effectively age into older adulthood and manage their health. Due to the increased challenges experienced by older African American women across the life course, it is imperative to identify factors that may mitigate the challenges of aging with the disease. Scant research exists focusing specifically on older African American women with HIV and thus our understanding of their experiences is still quite limited. Examining the personal strengths and social resources utilized to curb the deleterious effects of aging is necessary to improve health and well-being in this population.

Purpose and Methods: The purpose of this dissertation was to advance our understanding of the experiences of African American women with HIV aging across the life course with particular attention paid to the influence of the role of social relationships on health and well-being. The purpose was achieved through exploring the challenges of aging with HIV as an African American woman and the importance of utilizing the life course perspective (Elder & Giele, 2009) to explore their experiences over time; examining the literature on the relationship between social relationships and health; and presenting two papers from the findings of a qualitative descriptive study conducted with older African American women that explored their experiences over the life course. Eighteen African American women over the age of 50 participated in this qualitative study that utilized in-depth life history interviews and timelines as the primary means of data elicitation. In the first paper, we analyzed the data for experiences with social relationships across the life course. In the second paper, we analyzed trajectories and turning points across the life course.

Results: Findings from the first paper highlight that developing and maintaining relationships over time was influenced by a variety of life course themes at the personal, relational, and structural level presented over three developmental time periods (childhood/adolescence, young/middle adulthood, and older adulthood). Women described tremendous barriers to relationship development and maintenance in both childhood/adolescence and young/middle adulthood including child sexual abuse, crack cocaine addiction, intimate partner violence, and HIV-related stigma. Women also reported having large social networks in younger years but not many important relationships. In contrast, older adulthood was described as a time with more positive social relationships, especially for those who were addicted to crack cocaine in their youth. As women aged, they built supportive networks with people they valued.

Findings from the trajectories and turning points paper show that while trajectories across participants were diverse, they were categorized into three main patterns: anchored; early struggling and upward progression; and continuously struggling. Life experiences were most dissimilar between women who experienced crack cocaine addiction compared to women who never used to drugs. The syndemic impact of substance abuse, violence, and HIV (Singer, 2009) was also important as was the cyclical nature of these co-occurring epidemics over time. Our study provides evidence that a traumatic event in early life may be the first step in the syndemic cycle.

The criminal justice healthcare system has the potential to impact millions of individuals annually. There are more than 2.3 million individuals in a prison or jail at any given time. Not accounting for individuals that have been released from a correctional setting back into the community, under community supervision, which account for 4.5 million individuals. Individuals with a history of justice-involvement have higher prevalence of chronic diseases and often seek healthcare in high-cost area such as the emergency room. Furthermore, this population face unique challenges related to socioeconomic needs, such as securing housing and employment. Yet, limited empirical evidence explores chronic noncommunicable diseases (NCDs) or factors that impact how one manages their chronic NCD after incarceration using a representative sample. Therefore, this dissertation uses a cross-sectional, descriptive, correlational study using the 2018 National Survey of Drug Use and Health to estimate the rates for the five chronic NCDs (heart conditions, hypertension, diabetes, asthma, and cancer) and the rates of individuals with a history of a chronic NCD. In addition, this dissertation has examined outpatient healthcare utilization among adults in the community supervised population (CSP) relative to the adults in the non-CSP.This dissertation includes a scoping review of literature in Chapter 2 that examine current practices of care and interventions use to improve the management of chronic diseases within a correctional setting. As well, as a broad scope of the current state of the evidence regarding chronic disease management within this population. Chapter 3 aims to describe the rates of chronic NCDs, history of having a chronic NCD, and outpatient utilization in the CSP relative to the non-CSP. In addition, Chapter 3, explores the differences in rates of chronic NCDs, history of having a chronic NCD, and outpatient utilization among the CSP (probation, parolee, and probation and parole). Chapter 4 dives deeper within the CSP to identify individual characteristics, socioeconomic characteristics, and clinical characteristics that are associated with chronic NCDs, history of having a chronic NCD, and outpatient utilization. Chapter 5 synthesized findings within the context of the current literature and produces future directions in research, policy, and practice that the results may impact to improve the management of chronic NCDs among the justice-involved population. Furthermore, the limitations to this dissertation are addressed within the context of the study. Management of chronic diseases among the justice-involved population is critical to ensuring improved health outcomes and reducing the burden of public healthcare systems. Identifying and describing the population characteristics of the CSP is foundational in developing targeted interventions in policy and practice with the goals to achieve optimal health outcomes among the justice involved population.

The long-term and multi-faceted consequences of trauma are well documented and health conditions associated with traumatic life events are often those that benefit from early and regular attention from a healthcare provider. However, for many trauma-exposed women, seeking out and receiving healthcare is associated with physical and psychological intrusions that are linked to their traumatic experiences. Implementing trauma-informed care, based in knowledge and understanding of trauma that sensitively meets the needs of survivors, is an effective way to improve trauma survivors’ healthcare experiences. However, implementing such changes in practice to improve care for survivors is often made difficult by the current prevailing characteristics of patient-provider relationships and the U.S. healthcare system. Further, relying on providers to change practice is a disempowering position for survivors; supporting survivors to advocate for their needs within healthcare interactions and the healthcare system could be an efficient, effective and empowering solution to attaining widespread trauma-informed care.

This dissertation addresses current knowledge deficits through: 1) description and comparison of lifetime trauma exposure among community-based women from diverse locations and backgrounds; 2) examination of existing trauma-informed care practices for survivors of physical and sexual violence; and 3) descriptions of the healthcare experiences, needs, and strategies of female survivors of physical and sexual violence with regard to navigating healthcare experiences, provider interactions, and the healthcare system. A descriptive, correlational analysis and a synthesis of current literature were used to address the first and second research aims. Original qualitative interview and participatory Photovoice studies were conducted to address the third research aim.

Findings from the statistical analysis of trauma exposure among four community-based samples of women in Colombia, Hong Kong, and the United States indicate that trauma exposure is more similar than different and that trauma and its effects are pervasive in the lives of women across diverse locations. The synthesis of literature elucidates five thematic elements of trauma-informed care including: sensitive and universal screening, provider-patient relationships, minimizing distress, maximizing autonomy, and providing appropriate collaboration and referral. Findings from the qualitative interview and participatory Photovoice studies highlight imbalances in power dynamics and lack of mutual belief and trust as the most significant challenges to positive provider-patient relationships and healthcare experiences. These findings also indicate that survivors of violence use a variety of strategies to navigate healthcare encounters in the face of system-, agency- and provider-level barriers to positive healthcare experiences.

This dissertation adds to existing evidence on trauma exposure and trauma-informed care, and data on the engagement behaviors and healthcare strategies of survivors of violence addresses substantive gaps in the literature. Further, these findings generate useful frameworks and foundations for future research to continue to explore survivors’ healthcare desires, provider-survivor relationships, and provider- and survivor-led interventions to support the implementation of trauma-informed care.

Contemporary, empirically-based knowledge of transgender health is scant and lacks understanding of physical health, health problems or impairments, chronic health conditions, and the impact of individual factors known to affect health outcomes in other vulnerable populations such as socioeconomic position and sexual orientation (Bowleg, 2012; MacCarthy, Reisner, Nunn, Perez-Brumer, & Operario, 2015). Despite a growing body of health-related literature, additional research is needed to advance our understanding of health among transgender subgroups such as male-to-female (MTF, transgender women), female-to-male (FTM, transgender men), and gender nonconforming (GNC) adults. This knowledge will help prioritize health needs and identify pathways to improve the health and reduce the health inequities plaguing the transgender population in the U.S. (Feldman et al., 2016; Institute of Medicine, 2011).

The purpose of this dissertation research was to establish evidence regarding the health of transgender and GNC adults in the United States. Specifically, this dissertation 1) reviewed current literature on the experiences of transgender adults when they access and utilize healthcare, 2) identified and addressed methodological concerns related to conducting transgender health research using data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), and 3) explored the health status of three transgender subgroups (MTF, FTM, and GNC adults) and their cisgender male (CGM) and cisgender female (CGF) counterparts. Health status analyses included 1) bivariate logistic regression models and one-way analysis of variance methods to test for study group differences in individual factors and health status, and 2) multivariable logistic regression models to determine the differential effects of individual factors on health status in the five study groups. A posteriori pairwise contrasts of the study groups were conducted when a significant overall study group effect was detected.

The main findings from this dissertation include the following. First, transgender adults experience numerous obstacles accessing healthcare, discrimination from healthcare professionals and clinicians, and barriers to medically necessary care, such as cross-sex hormones, as well as primary and preventative healthcare. Second, the 2015 BRFSS data collection procedures introduced measurement error and sex misclassification that contributed towards problematic BRFSS sampling weights. Third, transgender adults have poorer health than their cisgender counterparts. However, when data are disaggregated into transgender subgroups, notable differences in the health of MTF, FTM, and GNC adults are revealed. Notably, GNC adults have poorer overall health than their transgender and cisgender counterparts.

Overall, the studies from this dissertation provide empirical evidence to inform health promotion and illness prevention in transgender and GNC adults. These findings make significant contributions to the transgender health knowledge base, and advance the field by identifying priority research topics, policy areas, and methodological considerations for public health surveillance and population surveys aimed at improving the health of transgender and gender nonconforming people. Findings also provide the foundation to improve healthcare delivery and educational programs for current and future health professionals. To further advance transgender health knowledge, a more comprehensive understanding of how gender identity and gender expression influence health status and healthcare utilization for transgender and GNC adults is needed.