Effect of an Internet-Based Education Program on Self-Care Agency in People Living with Human Immunodeficiency Virus

Both low health literacy and insufficient electronic health literacy (ehealth) impede access to reliable internet health information for people living with chronic illnesses such as HIV/AIDS. Use of reliable internet health information has been shown to improve self-care through increased understanding of symptoms, disease processes, and improvements in adherence with treatment plans. This study examined the effectiveness of two interventions that taught people living with HIV/AIDS (PLWH) how to recognize reliable internet based HIV health information. Orem’s Self-Care Theory was the framework for this quasi-experimental study that used a non-equivalent two-group design with two experimental interventions (MEDLINE and E-HELP). Participants (N=100) in both interventions watched the NLM video, Evaluating Internet Health Information, and completed an at-home assignment that consisted of navigating to an HIV health information website and identifying the six criteria of a reliable internet health information website as described on the video. The E-HELP group (n=50) received a teach-back session averaging about 12 minutes with an expert clinician. Participants in both groups returned one week later to demonstrate their ehealth. HIV health literacy, electronic health literacy, and ability to identify reliable internet health information were measured before and after the interventions and one week later; self-care agency was measured before the interventions and one week later. The mixed model procedure, a Generalized Linear Modeling technique, was used to account for the longitudinal nature of the data. The mixed procedure allows for the modeling of the covariance structure to account for this correlation of the same subject responses. A restricted maximum likelihood approach (REML) was used and the covariance type was unstructured since we were not imposing any constraints on the values. A full model was fitted first for all study variables and included the basic conditioning factors of age, gender, race, ethnicity, education, and AIDS diagnosis. Model fitting was repeated eliminating the non-significant variables with the exception of time and the interaction of time and group. The independent variables (HIV health literacy, ehealth, and ability to identify reliable internet health information) were loaded to determine the effect of the intervention on the dependent variable, self-care agency. Some differences were found in basic conditioning factors. Non-Hispanics had significantly more self-care agency compared with Hispanics (207.98 vs. 183.36, p=.000); this may be related to English proficiency, acculturation, and cultural factors. Younger age was significant for HIV health literacy (p=.020), ehealth (p=.001), and ability to identify reliable internet health information (p=.024) which is consistent with previous research. Women had significantly better HIV health literacy compared to men (p=.039). No significant within group differences for self-care agency were found for either the MEDLINE group (p=.780) or the E-HELP group (p=.631). Participants may have needed more than one session of either intervention to produce an increase in self-care agency, or there may not have been adequate time between the two sessions of either intervention to produce increases in self-care agency. Results of this study did not provide sufficient evidence that, within the scope of Orem’s theory of self-care agency, health literacy is a foundational capability or that ehealth and ability to identify reliable internet health information are constituents of power component #7. There were no significant differences in scores between groups for HIV health literacy (p=.748), ehealth literacy (p=.308), ability to identify reliable internet health information (p=.259), and self-care agency (p=.887). Possible reasons for the lack of significant difference between the two intervention groups include the short time between sessions, participants’ limited access to computers, and a preference for information from healthcare providers. In addition, the interventions may not have been sufficiently different to produce significantly different results. There were, however, significant within group improvements from baseline to the final session in HIV health literacy (MEDLINE: p=.005; E-HELP: p=.045), ehealth (MEDLINE: p=.003; E-HELP: p=.000), and ability to identify reliable internet health information (MEDLINE: p=.000; E-HELP: p=.000), which indicates that some components of the interventions made a difference. Participants’ demonstration of ehealth skills belied the lack of difference between groups on electronic health literacy and ability to identify reliable internet health information. Scores on the at home assignment, which required participants to navigate to an HIV health-related website, then find and identify the six website reliability criteria, were higher for the E-HELP group (received the teach-back session) compared with the MEDLINE group that just watched the video. When the investigator observed the participant find an HIV health-related website and identify the six website reliability criteria, there was an increase in ehealth for the E-HELP group compared to a decrease in ehealth for the MEDLINE group. Although further testing and refinement of the interventions are needed, evidence from this study indicates that either intervention may be a low cost and effective means to teach people how to identify reliable internet health information for self-care

Understanding Health Literacy for People Living With HIV: Locations of Learning.

Health literacy, including people's abilities to access, process, and comprehend health-related information, has become an important component in the management of complex and chronic diseases such as HIV infection. Clinical measures of health literacy that focus on patients' abilities to follow plans of care ignore the multidimensionality of health literacy. Our thematic analysis of 28 focus groups from a qualitative, multisite, multinational study exploring information practices of people living with HIV (PLWH) demonstrated the importance of location as a dimension of health literacy. Clinical care and conceptual/virtual locations (media/Internet and research studies) were used by PLWH to learn about HIV and how to live successfully with HIV. Nonclinical spaces where PLWH could safely discuss issues such as disclosure and life problems were noted. Expanding clinical perspectives of health literacy to include location, assessing the what and where of learning, and trusted purveyors of knowledge could help providers improve patient engagement in care

A qualitative description of service providers experiences of ethical issues in HIV care.

BACKGROUND: Managing HIV treatment is a complex multi-dimensional task because of a combination of factors such as stigma and discrimination of some populations who frequently get infected with HIV. In addition, patient-provider encounters have become increasingly multicultural, making effective communication and provision of ethically sound care a challenge. PURPOSE: This article explores ethical issues that health service providers in the United States and Botswana encountered in their interaction with patients in HIV care. RESEARCH DESIGN: A descriptive qualitative design was used to collect data from health service providers and patients using focused group discussions. This article is based on responses from health service providers only. PARTICIPANTS AND CONTEXT: This article is based on 11 focused group discussions with a total sample of 71 service providers in seven US sites and one Botswana site. ETHICAL CONSIDERATIONS: Ethical review boards at all the study sites reviewed the study protocol and approved it. Ethical review boards of the studys coordinating centers, Rutgers University and the University of California at San Francisco, also approved it. The study participants provided a written informed consent to participate. FINDINGS: HIV service providers encountered ethical challenges in all the four Beauchamp and Childress biomedical ethics of respect for patients autonomy, beneficence, justice, and nonmaleficence. DISCUSSION: The finding that HIV service providers encounter ethical challenges in their interaction with patients is supported by prior studies. The ethical challenges are particularly prominent in multicultural care and resource-constrained care environments. CONCLUSION: Provision of HIV care is fraught with ethical challenges that tend to pose different issues depending on a given care environment. It is important that strong partnerships are developed among key stakeholders in HIV care. In addition, health service providers need to be provided with resources so they can provide quality and ethically sound care

A qualitative description of service providers' experiences of ethical issues in HIV care

Background: Managing HIV treatment is a complex multi-dimensional task because of a combination of factors such as stigma and discrimination of some populations who frequently get infected with HIV. In addition, patient-provider encounters have become increasingly multicultural, making effective communication and provision of ethically sound care a challenge. Purpose: This article explores ethical issues that health service providers in the United States and Botswana encountered in their interaction with patients in HIV care. Research design: A descriptive qualitative design was used to collect data from health service providers and patients using focused group discussions. This article is based on responses from health service providers only. Participants and context: This article is based on 11 focused group discussions with a total sample of 71 service providers in seven US sites and one Botswana site. Ethical considerations: Ethical review boards at all the study sites reviewed the study protocol and approved it. Ethical review boards of the study's coordinating centers, Rutgers University and the University of California at San Francisco, also approved it. The study participants provided a written informed consent to participate. Findings: HIV service providers encountered ethical challenges in all the four Beauchamp and Childress' biomedical ethics of respect for patients' autonomy, beneficence, justice, and nonmaleficence. Discussion: The finding that HIV service providers encounter ethical challenges in their interaction with patients is supported by prior studies. The ethical challenges are particularly prominent in multicultural care and resource-constrained care environments. Conclusion: Provision of HIV care is fraught with ethical challenges that tend to pose different issues depending on a given care environment. It is important that strong partnerships are developed among key stakeholders in HIV care. In addition, health service providers need to be provided with resources so they can provide quality and ethically sound care.This work was supported by the HIV/AIDS nursing Care and Prevention, National Institutes of Health [J32 NR007081] (Portillo); Irwin Belk Distinguished Professorship, University of North Carolina Wilmington; K24DA037034 (Johnson); and the Government of Botswana Human Resources Development Council

Building Trust and Relationships Between Patients and Providers: An Essential Complement to Health Literacy in HIV Care.

Health literacy is important for access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient-provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n = 135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient-provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care

Language and culture in health literacy for people living with HIV: perspectives of health care providers and professional care team members

Low health literacy has been linked to inadequate engagement in care and may serve as a contributor to poor health outcomes among people living with HIV and AIDS. The purpose of this paper was to examine the perspectives of health care providers and professional care team members regarding health literacy in HIV disease. A secondary data analysis was conducted from a qualitative study aimed at understanding factors that help an HIV positive person to manage their HIV disease. Data were collected from sites in Botswana, the US, and Puerto Rico. In the parent study, data were collected through focus group discussions with 135 people living with HIV, 32 HIV health care providers (HCPs), and 39 HIV professional care team members (PCTMs). SPSS was used to analyze quantitative data while ATLAS.ti was used to analyze qualitative data. The findings from analyses of the perspectives of HCPs/PCTMs suggested that linguistic and cultural factors were important themes in the exchange of HIV information between health care providers and PLHIV. These themes included ineffective communication, health seeking behavior, cultural facilitators, and complementary and alternative/traditional healing methods. Thus, this study suggests that language and culture have a major role in health literacy for PLHIV

Building Trust and Relationships Between Patients and Providers: An Essential Complement to Health Literacy in HIV Care

Health literacy is important for access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient–provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n = 135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient–provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care

Building Trust and Relationships Between Patients and Providers: An Essential Complement to Health Literacy in HIV Care.

Health literacy is important for access to and quality of HIV care. While most models of health literacy acknowledge the importance of the patient-provider relationship to disease management, a more nuanced understanding of this relationship is needed. Thematic analysis from 28 focus groups with HIV-experienced patients (n = 135) and providers (n = 71) identified a long-term and trusting relationship as an essential part of HIV treatment over the continuum of HIV care. We found that trust and relationship building over time were important for patients with HIV as well as for their providers. An expanded definition of health literacy that includes gaining a patient's trust and engaging in a process of health education and information sharing over time could improve HIV care. Expanding clinical perspectives to include trust and the importance of the patient-provider relationship to a shared understanding of health literacy may improve patient experiences and engagement in care