Perceptions of HIV Positive Patients towards Faith-Based Community Support in a Rural Setting
Abstract
There have been studies to demonstrate different perspectives of FBOs. These organizations are in a unique position and aim to provide support, but current literature is proven not to meet various criteria that satisfy patients’ perception; therefore, more studies are needed to incorporate the proper tools. It means that FBOs are known to provide support, and they are in an excellent position to do so, but most studies have not been conducted to show how patients’ perceptions are positively affected. Various quantitative studies had been performed for many years; therefore, minimal qualitative research investigating the phenomenon of the attitudes of HIV-positive patients in faith-based structure. The purpose of this proposed study is to examine the lived experiences of a sample of 5 participants from rural areas who have lived experiences with being HIV-positive and seeking community support. The study will facilitate the understanding of the perceptions of people living with HIV on assistance accorded by the faith-based community support in rural areas. This study will focus on the various interventions by “rural” religious community support programs. Patients’ perceptions and experiences regarding the possible improvement of their quality of life would also be studied and investigated. The overarching research question focuses on how participants make meaning of their experiences in the context of their faith in God. Data will be collected using in-depth, structured face-to-face interviews. This data and themes will be coded and developed, utilizing the NVivo software. The study’s findings and recommendations may serve as an infrastructure for developing positive social change by enhancing the understanding of researchers and practitioners on the phenomenon of HIV-positive patients’ perceptions towards faith-based community support in a rural setting.
Dedication
I dedicate my dissertation to my entire family and many friends. A special feeling of gratitude to my loving mother, Teela Rollins, special brothers, Dakota Walker and Ruperto Estrada, sisters, Shenita Colson, Belinda Vaughters, Vincia B. Miller, Bobby Smith, Ruby Pearson, Gervonne Carter whose words of encouragement and push for tenacity ring in years. The Felts and the Jacksons have always inquired about the progressions that were very special to me. Dedication of this dissertation is also to my deceased family members: Dorris P. Rollins, Rev. John H Partee, John B Long, Saundra M. Rollins, Jean Kpan, Sandra Lowery-Rucker, and Marcy Hester-Wiggins. I thank my church families: Rock Hill A. M. E. Zion Church of Concord, N. C, Sandy Ridge A. M. E. Zion Church of Landis NC, and Victory Tabernacle Interdenominational Ministries of Harrisburg, NC, who have supported me throughout the process. I will always appreciate all they have done. Special thanks to Anna Douglas, Barbara Williams and Sylvia Muckelvaney, and Dr. Nicole-Sherrill Corry for assisting me in developing my technology skills, for the many hours of proofreading, and Rev. Samuel C. Blanks for helping me to master the value of leadership. I dedicate this work and give special thanks to my Lord and Savior, Jesus Christ.
Acknowledgments
I wish to thank my committee members who were more than generous with their expertise and precious time despite my health challenges and other issues that would persist. Special thanks to Dr. Harold Griffin, my current committee chairperson, Dr. Cynthia Tworek, my former committee chairperson for her countless hours of reflecting, reading, encouraging, and, most of all, their patience throughout the entire process. Thank you, Dr. Fredrick Schulze, for serving on my committee.
I would like to recognize and thank my division for authorizing and providing any assistance requested. Finally, I would like to thank my teachers during my education matriculation, with my mentor-teachers and administrators in my different schools, churches, and organizations that assisted me with this project. Their excitement and willingness to provide feedback made the completion of this research an enjoyable experience.
Table of Contents
Human Immunodeficiency Virus remains of the major epidemics that continue to threaten the lives of many people, not only in the United States but across the globe. The first case of Human Immunodeficiency Virus (HIV) in the United States was first recorded in the mid to late 1970s. It became more widespread in the 1980s and 1990s (Centers for Disease Control and Prevention [CDC], 2019a). Left untreated, HIV can develop into acquired immune deficiency syndrome (AIDS), which destroys the body’s ability to stave off further disease and infection (CDC, 2019a). Although there is no cure for the virus, individuals who receive proper medical care can effectively live longer and maximize the value of their lives.
HIV disproportionately affects African Americans and other minority populations (Knighton et al., 2016). In 2016, 1.1 million Americans aged 13 or older were HIV-positive (CDC, 2019c). Of that number, 476,100 were Black or African American (CDC, 2019c), representing 43.3% of the HIV-positive population. African Americans who were HIV-positive in 2016 were 7.3 times the rate of Whites (CDC, 2019c). The disproportionate rate of infection by ethnicity indicates the need to create and implement community programs for prevention and education (Abara et al.,2015).
Nonetheless, current programs implemented to manage HIV are frequently inadequate. The inadequacy is instigated by various factors ranging from stigma to an individual’s fear of disclosing HIV-positive status (Bussone, 2017; Ojikutu et al., 2016). Education, awareness and cultural appropriateness are required components of reducing stigma (Ojikutu et al., 2016). Thus, effective community management initiatives are needed to provide support to HIV-positive individuals, which may subsequently reduce the spread of the disease. This study will provide a better understanding of the perceptions of individuals who are HIV-positive regarding faith-based community support as a way of finding strategies to reenergize their involvement in Faith-based organizations (FBOs).
In the remainder of this chapter, I will summarize relevant literature related to this topic, concerns based on existing evidence, the focus of the study, research questions, purpose statement, and SCT. The social cognitive theory is also defined, and its constructs thoroughly analyzed. Particular emphasis is given on the application of the theory as a guide to study and analysis of the factors affecting the perceptions of HIV positive patients towards faith-based organizations. The nature of the study will be next, along with a discussion of the qualitative research design, a brief description of study participants, concepts under examination, and techniques for analyzing collected data. The chapter includes an analysis of the definitions, assumptions, scope and delimitations, biases, and principles guiding the transferability of findings.
Human Immunodeficiency Virus is one of the world’s premier infectious diseases (Folasire, Akinyemi & Owoaje, 2014). The condition causes severe suffering to patients in various ways. Accompanying HIV is an increased vulnerability to opportunistic infection and mental anguish, among other intense challenges (Ojikutu et al., 2016). People living with HIV suffer from shame, which could lead them to live in denial or not to disclose the condition (Ojikutu et al., 2016). Individuals living with the disease may be more concerned about their health conditions and their exposure to imminent death, intensifying the risk of depression, among other mental conditions, which adversely affects their quality of life.
Similarly, people living with an HIV-positive patient may hold various negative views of the infected individual, which affects their interpersonal relationships with others in the community (Wu & Li, 2013). Due to the stigmatization and psychological disturbance of people living with HIV, perceptions of community support vary significantly from one locality to another (Pindani et al., 2013). Faith-based interventions that tailor intervention components to the determinants of HIV-related stigma can serve as an effective strategy to address HIV-related stigma in African American communities in the United States (Jason et al., 2016). The interventions are vital in both health and illness; however, more work is needed to determine the link between the quality of life in patients with HIV and their perceptions of these community support programs.
The number of HIV-positive patients who actively take part in community programs that somewhat or specifically address HIV-related concerns has drastically reduced over the past few years. Various studies have related this undesirable decline to changes in various social contracts such as better hospital-based and home-based care and improved perception of society on the disease (Bauermeister et al., 2017; Eaton et al., 2019; Pingel & Bauermeister, 2017; Valaitis et al., 2017). This trend is especially true for African-Americans living with HIV, and it serves to explain the drop in levels of community involvement through such programs, especially in states dominated by African-Americans (Coleman, Tate, Gaddist, & White, 2016). In rural areas, HIV-positive individuals often have few to no resources for psychological or community support (Valaitis et al., 2017). Compounding this problem is that the majority (80.1%) of adults living in rural areas are African American (Weisman et al., 2015). Among the barriers that rural patients disproportionately faced was a lack of community-based HIV information and fear of social prejudice, especially in the workplace and social gatherings (Bradley, 2018). Another study of belonging to the African Diaspora, which includes all people of color, is a case study of community reactions in rural areas. This study confirmed the difficulty of disseminating knowledge, opening dialogue, creating both formal and informal networks, and building partnerships, preventing what the authors deemed to be a “health-enabling social environment” (Mampane, 2018).
African Americans are strongly religious, heavily involved in their churches and other faith-based endeavors (Francis & Liverpool, 2009). Accordingly, the high rates of HIV among this population, coupled with deep faith, indicate the need to provide community support to HIV-positive African Americans. In addition to the traditional role of offering spiritual guidance and comfort, Faith-Based Organizations (FBOs) have had an extended reach in rural communities to provide psychological and counseling services (Ochillo, van Teijlingen, & Hind, 2017). The social prejudice and discrimination associated with HIV, coupled with the stigma directed at those who acquired it, have made community organizations sluggish to coordinate assistance to needy members of their communities. This trend is even made worse by the lack of knowledge of alternative avenues to addressing such disparities (Francis & Liverpool, 2009). In recent years, however, FBOs have assumed a more prominent role in HIV education and care in rural communities.
FBOs play a significant role in HIV education efforts, particularly in rural areas, with trained leaders serving as agents of change in guiding the organizations’ direction (Coleman et al., 2016). These organizations are also a beneficial resource in providing socialization and development; they may even offer comprehensive sexual education to all community members. Increasing community support based on a spiritual foundation is beneficial to individuals and society, especially concerning HIV awareness and emotional support in rural, primarily African American communities (Coleman et al., 2016).
Other people’s perceptions of HIV-positive individuals may have personal and socio-economic costs on individuals, family networks, and communities (Maskay et al., 2018). Individuals and cultures have overemphasized the need to protect themselves rather than provide support and reassurance to those affected by the disease resulting in feelings of isolation and discrimination among those affected (Grossman & Stangl, 2013). HIV-related social pressure is a major challenge in deterring and controlling the spread of the virus. FBOs have the ability and resources to provide supportive care to address the community resources that are lacking among HIV-positive individuals.
In rural communities, HIV-related humiliation accompanies individuals’ prejudicial beliefs about the victim’s risky acts. Such prejudicial attitudes may put individuals living with HIV in unnecessarily hostile and uncomfortable situations as they face many forms of discrimination and neglect. In confronting the misconceptions and resolving the epidemic, efforts are needed to allow open discussion of HIV within faith communities. Faith-based intervention efforts must include religious leaders, community-based organizations, local and state officials, people living with HIV, community leaders, and families. A set of systemic and cultural factors lead to a lack of HIV education, evaluations, or sexual risk reduction measures while maintaining the social pressures attached to HIV infection (Abara et al.,2015). African Americans in the southern United States appear to bear the burden of this disease and the associated social side effects.
Some scholars have focused on the perceptions of HIV-positive individuals on faith-based community support in rural areas (Khamarko et al. 2013; Kontomanolisetal, 2017). Faith-based support can have tremendous positive effects on HIV-positive patients in low-and middle-income countries (Khamarko et al., 2013). The researchers found that community support for HIV-positive patients influenced adherence to medication, access to healthcare, and quality of life. Alternately, Kontomanolis et al. (2017) showed that communities lack the resources required to incorporate HIV-positive individuals seamlessly, resulting in those people becoming marginalized and isolated. Dixit et al. (2009) noted that people who have HIV need proper education, access to medication, and equal employment opportunities readily met through community support. A faith-based intervention could encourage more members of society to provide help to HIV-positive individuals (Vitillo, 2009). Despite these known benefits, there is insufficient literature on how to get HIV-positive patients more involved in FBOs to boost their living standards. Understanding their perceptions on FBOs establishes a foundation for improving their participation. Accordingly, more scholarly inquiry into HIV-positive individuals’ perceptions and experiences with FBOs is necessary to uncover ways to improve the anticipated level of participation.
Incidences of HIV among African Americans are higher than among other races in the United States. According to the CDC (2020), there are about 38,700 new HIV infections in the US every year, and approximately 42% of the new infections occur among African Americans. In the southern part of the United States, which is dominantly largely by blacks, made up about 52% of the new cases followed by the west at 19% (CDC, 2020). Although African Americans are often deeply religious, there is a lack of adequate support from FBOs (Hall et al., 2017). Nonetheless, attitudes regarding care for HIV-positive persons have not received sufficient analysis and needs further research. The gap suggests that there is a need to explore the perceptions of individuals with HIV on FBO support in order to identify the beliefs and convictions which inform their involvement in the organizations and establish how to boost their participation. Thus, this study seeks to establish reasons why many African Americans who are living with the virus take little interest in involving in FBOs. It also assesses what the patients know about these organizations and how their perceptions inform their decisions on the involvement in FBOs.
FBOs are a significant asset because they appeal to broad audiences and can affect many people (Francis & Liverpool, 2009). Faith leaders and their respective institutions play a crucial role in providing service to the community, with links to the reduction of HIV-related health factors (Sutton & Parks, 2013). Faith-based social workers from the Christian church are also often involved in their congregation health ministry activities. Repositioning faith-based organizations at the heart of HIV response intervention is critical in facilitating health outcomes, reducing new cases, and ensuring that the patients attain social wellness.
The purpose of the qualitative study is to explore how HIV-positive individuals understand and perceive FBOs to establish ways to improve such perceptions as a way of enhancing the effectiveness of FBOs. The research will focus on the African American populations in a rural area in North Carolina to identify the different interventions by Faith-Based support programs developed in their communities. The study will assess the target group’s perceptions and experiences and how responses would be enhanced to improve their quality of life. With great significance, the study will contribute to adherence to how religious-based organizations and cultural precursors influence the sensitiveness of patients
Research Question 1. How do African-American HIV+ patients perceive faith-based community support, as defined by its role in the societal interventions of African-American faith-based organizations?
Research Question 2. How do perceptions of HIV+ patients towards faith-based and community support influence quality of life?
Research Question 3. How do perceptions of HIV+ patients towards faith-based community support influence the decision to reveal HIV status?
One of the theories that can be used to explain the perceptions HIV-positive patients have on faith-based community support in a rural setting, especially in regard to their betterment, is the social cognitive theory. The theory posits that various personal factors interactively influence each other through a framework based on personal interactions and observations (Bandura, 1999). In other terms, Albert Bandura was convinced that social interactions, environment, and behaviors greatly inform the perceptions and behaviors of individuals that live and work within those social contexts. SCT incorporates affective, behavioral, cognitive, biological, and environmental elements (Bandura,1999). By applying Bandura’s (1999) argument and assumptions, it is fair to suppose that HIV positive patients living within communities in which faith-based support is strong and praised by the members generally have a positive perception about FBOs and are more motivated to get involved in the programs they offer. The reciprocal is to be expected with patients living in communities where faith-based community programs have weakly rooted. This theory can be used to explain why the involvement of HIV-positive patients on FBOs is reducing. Le et al. (2017) found that African Americans who have greater involvement in faith communities greatly support religious, social activities. However, the number of African-Americans actively involved in faith communities is reduced (Le et al., 2017). Using this theory, it can be supposed that the supposed negative perception of HIV-positive patients on FBOs is directly linked to the overall reducing involvement of African Americans in faith communities.
Social cognitive theory is built on six constructs, which can be used to explain the correlation between HIV-positive patients’ perceptions and faith-based community support. The constructs, including reciprocal determinism, behavioral capacity, observational learning, reinforcements, expectations, and self-efficacy, when looked from the society level, can explain how people learn and regulate behavior or perceptions (Bandura, 1999). For instance, the reciprocal determinism construct holds that people tend to adopt thoughts and behaviors based on dynamic and reciprocal interaction among them. As such, the perceptions held by people around an HIV positive patient on faith-based community support might act as a stimulus towards the patient’s perception on the support provided by FBOs.In line with SCT’s tenets, it is possible to explore the perceptions and experiences of HIV-positive individuals regarding faith-based interventions.
Due to its frequent application in behavior observation and subsequent modifications, the SCT framework is a handy tool to delineate the impact and ramifications associated with HIV infection, while, at the same time, establishing the basis for low enrollment of HIV positive patients to community organizations aimed at managing the spread of the epidemic. According to Bandura (1999), a significant component of the SCT framework as it relates to individual behavior is self-efficacy. By incorporating the concept of self-efficacy, I would be able to acknowledge individuals’ control over their behavior, hence develop outreach techniques based on individuals’ autonomy.
The proposed study will employ qualitative research, specifically content analysis research design. Of the three types of research—qualitative, quantitative, and mixed methods—qualitative is the best suited to uncover the perceptions and lived experiences of participants. Various reasons informed the decision to select a content analysis design for this study. First, it is highly flexible and is useful in carrying out an extensive exploration of respondents’ attitudes, perceptions, intentions, and experiences. Secondly, the design focuses on generating a wide range of ideas, perceptions, and opinions that a person might have on a specific issue, making it useful in exploring patients’ perception on community-based support (Zournazis et al., 2018). Thus, the qualitative design is fit for this study.
Content analysis will be used to explore HIV patients’ perceptions of faith-based community organizations (FBO) with respect to their services. Realistic phenomenology is a phenomenological study that allows researchers to explore meaning through a sample of participants who share experiences and understanding of a particular phenomenon (Creswell, 2015). This approach incorporates ontological essence in everything, including sentient and collective social action (Vacchelli, 2018). A realistic phenomenological approach is appropriate in capturing the experiences and perceptions of HIV-positive individuals concerning FBOs’ support. As used in this research, FBOs are not-for-profit organizations interested in promoting social wellness through religious inspiration (Zournazis et al., 2018). Phenomenology will enable the researcher to focus on the experiences of participants related to their perceptions of faith-based community support and the quality of life. Phenomenology is the appropriate design for this inquiry.
The research will be conducted using semi-structured audio-recorded interviews using open-ended questions to allow for detailed responses, with queries specific to how faith-based community support has affected participants’ lives. Research questions will be based on a social cognitive perspective, with data collection from interviews relating to the experiences and perceptions of the HIV-infected participants. After transcribing all recordings, I will use Nvivo software to review each participant’s responses to identify common elements, points of view, and characteristics. An extensive analysis of the elements will then be carried out to determine specific factors that inform the patients’ perception on FBOs.
Definitions
Community support: Community support is an organized system of care to assist adults with long-term disabilities to meet their needs and develop their potential without unnecessary isolation or exclusion from the community. In this study, community support applies to HIV-positive individuals (Zournazis et al., 2018).
Faith-based intervention: Volunteers or dedicated individuals’ response to social work based on their religion (Payne-Foster et al., 2016).
Faith-based organization (FBO): An FBO is developed on a selected religious ideology. It has a clear mission statement and often draws its activists (leaders, staff, and volunteers) from a religious group (Anugwom & Anugwon, 2018).
HIV prevention: For this study, HIV prevention may consist of activities, programs, and services developed to prevent or reduce HIV transmission for individuals who are non-infected with HIV, as well as individuals who are HIV-positive (National HIV Prevention Inventor, 2009).
This inquiry bases its arguments, data collection process, analysis, and conclusions on various tangible assumptions. It is assumed that personal perceptions FBOs are intrinsic and voluntary. Holding to this assumption, there is no intention to compel or coerce respondents to provide a specific response. Additionally, the respondents will provide responses based on their individual judgments and convictions. This assumption is critical in overcoming bias. Secondly, it is assumed that there will be no researcher bias. There will be no chance for the researcher to consciously or unconsciously focus on questions and data that supports his beliefs and expectations, which might lead to skewed results.
Scope and Delimitations
To qualify, participants must reside in a selected rural area of North Carolina and have had experiences with and/or perceptions of FBO resources. Individuals, who are not HIV-positive, do not reside in the rural area of study, or have no experiences to relate, will not be eligible for inclusion in the research inquiry. Therefore, I will adopt a conservative approach in the interest of participants’ mental health, community support, and ethical considerations. Interviews will be limited to HIV-positive patients over control programs to discuss community resources’ perceptions in rural areas.
Limitations are restrictions or issues in a study outside of the researcher’s control that may decrease the transferability of findings. Like any other research, this study exhibits numerous potential limitations. The greatest limitation is its small sample size. Although it targets a population of HIV-positive patients living in rural areas, it only has a sample size of five people. The small sample might not accurately represent the targeted population. As such, the results might be less reliable.
Another significant limitation is the use of purposive sampling in selecting participants. The nonprobability sampling method has the potential of increasing biases as participants are selected based on convenience and self-selection. In this case, every potential qualifying individual is not given an equal opportunity to participate, leading to potential bias. My connection with various FBOs might also lead to researcher bias, posing a greater threat to reliability.
To address the threat of researcher bias, I will take time to carefully examine my beliefs and expectations, documenting them with bracketing and setting them aside not to influence data collection or findings. Other means of addressing limitations include applying qualifying criteria to participants, executing a qualitative phenomenological study according to guidelines by Creswell (2013), and involving participants in confirmation of data. I will strive to promote confidence, trust, and openness of the participants by developing early familiarity with the participant’s culture before collecting information.
Open-ended questions will be posted during the interview process allowing the participants to articulate their experiences dealing with HIV. I will utilize sessions with the dissertation chair to discuss the study approach, identify flaws, develop ideas, and recognize bias well as peer scrutiny of the research by peers and colleagues. Due to my connection to FBOs, researcher bias may pose a threat to reliability. To address the threat of researcher bias, I will take time to carefully examine my beliefs and expectations, documenting them with the practice of bracketing and setting them aside not to influence data collection or findings. Other means of addressing limitations include applying qualifying criteria to participants, executing a qualitative phenomenological study according to guidelines, and involving participants in confirmation of data.
This study will uniquely explore the perceptions and experiences of individuals with HIV regarding the support and resources provided by FBOs. Without research such as this, their views of community behaviors and approaches may remain undisclosed. Achieving a better understanding of HIV-positive patients’ opinions could inspire several strategies and plans to provide community support in rural areas, particularly among FBOs. For instance, creating health awareness among people living with HIV can only be successful if the targeted people are responsive and self-motivated to take part in such activities. While previous studies have explored the aspect of community involvement and initiatives in HIV control and patient care, little has been done to address the influence of belief and religious systems-based efforts on HIV control.
Negative attitudes towards HIV-positive patients pose chronic social problems, particularly in rural areas where such incidences are higher. Due to various socio-cultural and economic risk factors, FBOs are private, conservative, and at times hesitant to provide community support. In addition to facing several adverse physical and mental health effects, HIV-positive people in rural areas find fewer resources available for effective treatment and support. Due to its applicability to spirituality and empowerment, SCT will be an appropriate conceptual framework for investigating the lived experiences and perceptions of individuals who are HIV-positive regarding community support from FBOs in rural settings. This study will be a means of addressing the lack of qualitative research regarding this phenomenon. Chapter 2 will incorporate a review of published literature that documents findings from quantitative, qualitative, and mixed methods studies relative to perceptions of HIV-positive patients toward faith-based community support in a rural setting.
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