The Journal - August 2019
Tex Med. 2019;115(8):e1.
Stephen D. Ramos, MA1, Aimee K. Roundtree, PhD2, Ty S. Schepis, PhD3, Kelly Haskard-Zolnierek, PhD3, Steve N. Du Bois, PhD1 Corresponding Author: Stephen D. Ramos, MA, 3424 S State, Tech Central, Room 201; phone: 312-567-3500; fax: 312-567-3493; email: email@example.com.
1 Illinois Institute of Technology, Department of Psychology, Chicago, IL 60616
2 Texas State University, Department of English, San Marcos, TX 78666
3 Texas State University, Department of Psychology, San Marcos, TX 78666
Much of the southern United States is characterized by unique social, structural, and political systems that may relate to increased stress and poor health outcomes for those living with HIV. Notably, research indicates that Texas has higher survival rates for human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) than general southern trends, which might suggest that Texans living with HIV experience HIV-related stressors and coping strategies influential to health differently than those living elsewhere in the South. This study used grounded theory and semi-structured interviews to increase understanding of HIV-related stress in Texas. Participants (N=20) were 12 people living with HIV in Texas and 8 HIV-care providers in Texas. Results indicated 5 emergent stress-related themes: housing strain, substance use, limited financial abilities, relationship dynamics, and internal pressures and psychosocial resiliency. Results also highlighted some of the potentially unique ways in which this sample experienced these themes, which may relate to relatively better HIV-related outcomes in Texas. Overall, our findings deepen understanding of how people living with HIV in Texas may experience stress and inform potential approaches to HIV care elsewhere.
An estimated 1.1 million people were living with HIV in the United States in 2016, including an estimated 162,500 who were undiagnosed.1 Research suggests that, geographically, patients in the South ( Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia) experience the greatest burden of HIV infection, illness, and death.2 Overall, the South contains 44% of all people living with HIV in the country3 and 37% of the U.S. population overall.4,5 Southern states share a number of historical and current social, structural, and political systems that may explain relatively poor HIV-related outcomes.6 These include concerns about immigration policies,7 ineffective abstinence-based sex-education,8 and for some, socio-structural determinants of health, e.g., discriminatory policies and practices, unequal access to education, and low health insurance rates.9
However, Texas may provide an unexpected exception to these HIV-related trends. For example, research indicates that, geographically, the South tends to have the lowest HIV-survival rate. However, Texas consistently has higher survival rates for both HIV and AIDS that are roughly equal to national averages.10 The South in aggregate continues to report disparities in per-person funding for HIV care relative to other parts of the United States.11 However, in 2018, Texas received the second-most funding in the South to integrate HIV prevention and surveillance programs.1 These programs may translate to secondary and tertiary prevention efforts that reduce subsequent HIV-transmission rates.
Research points to a series of system-related factors (e.g., patient-provider relationships), social factors (e.g., HIV stigma), and individual factors (e.g., mental illness and substance use) serving as psychosocial stressors that function as barriers to HIV treatment.12,13 Notably, a Texas-based study assessing both system-related and patient-related barriers to HIV care found that barriers fell largely within the patient domain (e.g., culturally based beliefs and behaviors, and mental health problems) rather than the system domain (e.g., inconvenient location, insurance coverage).14 This implies that Texas may be a unique Southern state with regard to HIV-related barriers. Specifically, patient barriers may be more important to address than system barriers within Texas and, therefore, warrant further exploration among Texans living with HIV.
Stress is supported empirically and theoretically to impede HIV treatment adherence among those with HIV.15,16 Experiencing stress can affect both the manifestation of HIV (physical and cognitive symptoms) and progression of HIV/AIDS (increase of HIV viral load).17,18 Stress contributes broadly to overall psychological distress in this population, and stress management can buffer the illness-related stress toll experienced by those living with HIV.19 Specifically, stress may influence aspects of medication adherence, social interaction, and other health-related behaviors, either directly or indirectly via substance use or avoidance-based coping. Coping strategies for reducing stress may influence health-related behaviors and improve HIV-related outcomes.19
Stress is commonly reported among those living with HIV and relates to HIV-related health.20 However, research that focuses on how people living with HIV in the South experience stress is relatively lacking. Exploring stress among people living with HIV in Texas, in particular, may provide other Southern states with insight into managing HIV among their citizens. This qualitative study aimed to characterize the experiences of stress for people living with HIV in Texas and to explore links between experiences of stress and health, more broadly, in this community.
The affiliated Institutional Review Board approved all methods and procedures for this project (IRB# 2015Y9495).
Recruitment was conducted via convenience sampling and began via email outreach to HIV organizations in the greater Austin and San Marcos area. Interested organizations provided informed memorandum of understanding documents, endorsing their support for conducting this study at their facilities. Then, informational flyers were posted for recruitment at each organization. Participants were eligible to participate if they were older than 18 years, fluent in English, and were either patients currently on antiretroviral therapy (ART), or HIV-care providers for clients living with HIV who were currently on ART.
Participants completed informed consent documents followed by individual, semi-structured interviews consisting of open-ended questions about specific types of HIV-related stress, stressful events that pertain to living with HIV in Texas, and coping strategies. Individual interviews were conducted in either a designated conference-style room or a private office, with only the interviewer and participant present to maintain confidentiality and foster a comfortable environment. The interviews averaged 60 minutes total. Participants were compensated with a $15 gift card. Individual interviews were audio recorded and transcribed for coding.
This study used a qualitative design with semi-structured interviews composed of guided questions to engage participants about stress broadly, stressful factors related to living with HIV specifically, and coping mechanisms. The study implemented grounded theory data analysis protocols, a systematic method for analyzing interview transcripts, personal narratives, and other unstructured data by producing emergent codes and themes from the data. This technique allows the data to “speak for itself” rather than applying a predetermined theoretical framework to analyze the data and is useful in explorations of phenomenon for which a theoretical framework has not been produced.21
Three stages of coding occurred: open coding, axial coding, and selective coding by using NVivo software. During open coding, transcriptions were marked line-by-line, by sentiment, and by sentence to indicate the conceptual and metaphorical meaning of each quotation’s main idea. Open codes were not mutually exclusive nor were they limited to answers for specific questions. During axial and selective coding, open codes were grouped and compiled into themes (e.g., categories) of codes that shared connections.22 Themes contained related variations of main ideas that emerged. During selective coding, core themes were identified and integrated into a conceptual model that mapped interrelationships among themes.22
During all aspects of the coding process, the first author and one of three trained co-coders refined codes. The first author was involved in coding each transcript, with each secondary coding divided among the three co-coders. Consensus was achieved through simultaneous coding, creating a codebook of common themes and reoccurring themes, and meetings where co-coders shared input for each code. If any coding discrepancies occurred, the researcher and co-coder reviewed the content of the transcript and the codes in question, to arrive collaboratively at a consensus about the code. If a consensus could not be met, an additional co-coder was enlisted to achieve consensus. Coder note-taking helped merge and eliminate ideas, as well as formalize definitions of and connections between concepts as they emerged and developed.
This study included a total of 20 participants, consisting of 12 people living with HIV who are currently on ART, and 8 HIV-care providers (Table 1). During the interviews, 2 HIV-care providers disclosed that they themselves were living with HIV. Most (non-care-provider) participants living with HIV were male (n= 8; 66.7%), and African American (n=7; 58.3%). Table 1 shows the full sociodemographic sample characteristics.
Five themes emerged pertaining to the stress of living with HIV: housing strain, substances use, limited financial abilities, relationship dynamics, and internal pressures and psychosocial resiliency. Table 2 presents these themes in narrative detail.
Housing strain represented the commonly reported experience of housing circumstances causing participant stress. Unfavorable housing situations were a major stressor, whether the participant with HIV reported living in government subsidized housing or not. Participants reported several dimensions of their unfavorable housing situations, including limited choices for living environments, dissatisfaction with government subsidized housing, and unsatisfactory living conditions. Unsatisfactory housing created several pathways for stress to impact participants living with HIV. Specifically, housing problems emerged as a vector for uncertainty and hostile living environments, all of which compounded stress for those in the sample.
Many participants reported that they engage in substance and alcohol use as a method of coping with distress, despite awareness of its harmful consequences. Several participants reported using substances for the purposes of relaxation and calming. Additionally, participants saw their experimentation with substances as a form of positive personal growth and coping. Overall, participants tended to minimize the health consequences of substance use. Participants reported continuing or increasing substance use behaviors from pre-diagnosis to post-HIV-diagnosis, noting they used substances to maintain lifestyle continuity.
Limited Financial Abilities
Limited Financial Abilities emerged as a stress-related theme. Participants shared when and how finances contribute to increases in stress. They felt stress trying to get to work, maintain work, and pay for necessities – particularly expenses associated with financial or medical emergencies. Receiving financial aid was itself a dilemma for participants. To meet parameters required to receive government assistance, participants were required to limit their amount of additional paid work and meet other specific employment parameters. Participants said that these parameters compromised their ability to work and meet their financial obligations. The dilemma served as a stressor of its own. Participants also described how financial responsibilities and needs competed with each other and created a “treatment versus hierarchy of needs” battle. An HIV diagnosis brought with it new responsibilities, side effects, and income obstacles to navigate.
Relationship dynamics included potential changes in relationships related to participants’ HIV diagnosis and related stress. Disclosing HIV status was stressful across relationship types. Participants perceived HIV-related stigma grounded in misunderstanding and ignorance of HIV on the part of their friends, family, and others. In turn, participants were often forced to educate others about HIV, and they found it necessary to selectively disclose their HIV status. These dynamics pressured interpersonal relationships for participants living with HIV. On the other hand, disclosure, when positively received, was reported to strengthen relational bonds and reduce stress.
Internal Pressures and Psychosocial Resiliency
Internal pressures and psychosocial resiliency included a range of perceptual and cognitive shifts, namely toward accepting life with HIV and managing the illness. After overcoming the initial shock of diagnosis, participants reported learning to have a more favorable outlook on their HIV status, self-image, personal growth, stress management, and stress perception. Many participants living with HIV claimed that HIV had made them stronger as a person and actually strengthened their self-perception, although they would not wish the disease upon others. They reported using religion and spirituality to cope with stress and manage life with HIV. Overall, while in some cases HIV negatively impacted self-perception, in many cases it was seen as a test of character, and religion and spirituality helped strengthen the support network.
Figure 1 provides an emergent model of stress and coping in our sample.
The purpose of this study was to use qualitative methods to explore the experiences and management of stress for people living with HIV in Texas. As Texas is consistently an outlier from the many negative HIV-related Southern trends, understanding the experience and management of stress in this sample could provide insight for others living with HIV.
The emergent model uses data obtained from this sample to visually map the experiences of stress for people living with HIV in Texas (Fig. 1). For this group, stress may stem mainly from 4 of the primary stressors shown as circular domains. The tangential rectangular nodes represent subdomains within each primary stressor that were identified throughout participant narratives – i.e., these provide examples of stressors within the circular domains. Two domains of coping also were included in the model. The arrows here indicate the direction of pull that these coping mechanisms provide to or from the experience of stress, as reported through participant narratives. Though labeled “maladaptive coping,” the primary coping style reported in participant narratives was substance use. Given that substance use can relate positively to stress and introduces several health-compromising vulnerabilities,20 substance use is included as a fifth domain of stress. We recognize however, from a patient-centered perspective, that substance use may not be wholly and necessarily maladaptive.
Research indicates multiple calls for improved quality of health care in the United States,23,24 as well as for improved HIV health care specifically.25–27 Simultaneously, personal experiences and perceptions of HIV-related stress may differ among those living with HIV, which may explain partially why Texas reports relatively favorable HIV-related health outcomes. Attitudes about substance use, religion, and spirituality, as well as parameters of governmental and social support, may differ in Texas versus the South generally. Therefore, these may affect differentially the quality of life for people living with HIV in Texas compared with those living elsewhere. Quality of life, in turn, may impact survival rate.28 Those providing HIV care could use therapeutic strategies to facilitate perspectival shifts around HIV-related stress. Indeed, while a diagnosis of HIV is unchangeable, interpretations of and reactions to stress are. It is possible that Texas-based community clinics have adopted these care strategies, while clinical care models elsewhere in the South remain focused on other important aspects of treatment. This explanation is speculative, and more work is needed to test such hypotheses. Furthermore, system domains (such as parameters of financial aid and governmental housing provision) have personal/patient dimensions and, therefore, consequences. These should be discussed and included in HIV care. Finally, at the broadest structural level, policy interventions that improve housing and employment policies for people living with HIV in Texas might also help reduce diagnosis-related stress pertaining to these domains. Providers of HIV care can advocate for policies at local, state, and federal levels that promote equity, and health and well-being, among those living with HIV.
This study has several limitations. Participants may have felt compelled to answer semi-structured questions in a specific way because of the nature of the study design. However, including various types of participants (people living with HIV and HIV-care providers) with various HIV diagnoses may partially address this concern. The study’s sample size was small but characteristic of many qualitative designs.29–33 Our sample’s demographics are not representative of the U.S. general population, which reduces generalizability, but our diverse sample in terms of race/ethnicity and income reflects current trends in HIV prevalence.34–36
Future studies could test empirical hypotheses related to regional differences in the experience and management of stress, specifically by comparing Texas with other Southern states using quantitative designs. Research also could investigate the role of structural support (e.g., financial assistance programs) in Texas as it relates to stress-related and HIV-related outcomes. Lastly, the emergent model could be tested empirically, both in Texas and, more broadly, in the South and other U.S. regions.
This study increases our understanding of experiences and management of stress among people living with HIV in Texas. They and their care providers in the sample identified five themes of stress and coping: housing strain, substance use, limited financial abilities, relationship dynamics, and internal pressures and psychosocial resiliency. These facilitated the creation of an empirical model that is testable both in Texas and elsewhere. Though many stressors identified are consistent within previous literature,37–42 we newly contribute the contextualization of these as potential explanations for the relatively favorable HIV-related outcomes in Texas.
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