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.

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.

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.

Strengthening monitoring and evaluation (M&E) and building sustainable health information systems in resource limited countries: lessons learned from an M&E task-shifting initiative in Botswana.

BACKGROUND: The demand for quality data and the interest in health information systems has increased due to the need for country-level progress reporting towards attainment of the United Nations Millennium Development Goals and global health initiatives. To improve monitoring and evaluation (M&E) of health programs in Botswana, 51 recent university graduates with no experience in M&E were recruited and provided with on-the-job training and mentoring to develop a new cadre of health worker: the district M&E officer. Three years after establishment of the cadre, an assessment was conducted to document achievements and lessons learnt. METHODS: This qualitative assessment included in-depth interviews at the national level (n = 12) with officers from government institutions, donor agencies, and technical organizations; and six focus group discussions separately with district M&E officers, district managers, and program officers coordinating different district health programs. RESULTS: Reported achievements of the cadre included improved health worker capacity to monitor and evaluate programs within the districts; improved data quality, management, and reporting; increased use of health data for disease surveillance, operational research, and planning purposes; and increased availability of time for nurses and other health workers to concentrate on core clinical duties. Lessons learnt from the assessment included: the importance of clarifying roles for newly established cadres, aligning resources and equipment to expectations, importance of stakeholder collaboration in implementation of sustainable programs, and ensuring retention of new cadres. CONCLUSION: The development of a dedicated M&E cadre at the district level contributed positively to health information systems in Botswana by helping build M&E capacity and improving data quality, management, and data use. This assessment has shown that such cadres can be developed sustainably if the initiative is country-led, focusing on recruitment and capacity-development of local counterparts, with a clear government retention plan.

Improving the quality of health information: a qualitative assessment of data management and reporting systems in Botswana.

BACKGROUND: Ensuring that data collected through national health information systems are of sufficient quality for meaningful interpretation is a challenge in many resource-limited countries. An assessment was conducted to identify strengths and weaknesses of the health data management and reporting systems that capture and transfer routine monitoring and evaluation (M&E) data in Botswana. METHODS: This was a descriptive, qualitative assessment. In-depth interviews were conducted at the national (n = 27), district (n = 31), and facility/community (n = 71) levels to assess i) M&E structures, functions, and capabilities; ii) indicator definitions and reporting guidelines; iii) data collection forms and tools; iv) data management processes; and v) links with the national reporting system. A framework analysis was conducted using ATLAS.ti v6.1. RESULTS: Health programs generally had standardized data collection and reporting tools and defined personnel for M&E responsibilities at the national and district levels. Best practices unique to individual health programs were identified and included a variety of relatively low-resource initiatives such as attention to staffing patterns, making health data more accessible for evidence-based decision-making, developing a single source of information related to indicator definitions, data collection tools, and management processes, and utilization of supportive supervision visits to districts and facilities. Weakness included limited ownership of M&E-related duties within facilities, a lack of tertiary training programs to build M&E skills, few standard practices related to confidentiality and document storage, limited dissemination of indicator definitions, and limited functionality of electronic data management systems. CONCLUSIONS: Addressing fundamental M&E system issues, further standardization of M&E practices, and increasing health services management responsiveness to time-sensitive information are critical to sustain progress related to health service delivery in Botswana. In addition to high-resource initiatives, such as investments in electronic medical record systems and tertiary training programs, there are a variety of low-resource initiatives, such as regular data quality checks, that can strengthen national health information systems. Applying best practices that are effective within one health program to data management and reporting systems of other programs is a practical approach for strengthening health informatics and improving data quality.

Establishing a health information workforce: innovation for low- and middle-income countries.

BACKGROUND: To address the shortage of health information personnel within Botswana, an innovative human resources approach was taken. University graduates without training or experience in health information or health sciences were hired and provided with on-the-job training and mentoring to create a new cadre of health worker: the district Monitoring and Evaluation (M&E) Officer. This article describes the early outcomes, achievements, and challenges from this initiative. METHODS: Data were collected from the district M&E Officers over a 2-year period and included a skills assessment at baseline and 12 months, pre- and post-training tests, interviews during stakeholder site visits, a survey of achievements, focus group discussions, and an attrition assessment. RESULTS: An average of 2.7 mentoring visits were conducted for M&E Officers in each district. There were five training sessions over 18 months. Knowledge scores significantly increased (p < 0.05) during the three trainings in which pre/post tests were administered. Over 1 year, there were significant improvements (p < 0.05) in self-rated skills related to computer literacy, checking data validity, implementing data quality procedures, using data to support program planning, proposing indicators, and writing M&E reports. Out of the 34 district M&E Officers interviewed during site visits, most were conducting facility visits to review data (27/34; 79%), comparing data sets over time (31/34; 91%), backing up data (32/34; 94%), and analyzing data (32/34; 94%). Common challenges included late facility reports (28/34; 82%), lack of transportation (22/34; 65%), inaccurate facility reports (10/34; 29%), and colleagues' misunderstanding of M&E (10/34; 29%). Six posts were vacated in the first year (6/51; 12%). A total of 49 Officers completed the achievements survey; of these, common accomplishments related to improvements in data management (35/49; 71%), data quality (31/49; 63%), data use (29/49; 59%), and capacity development (26/49; 53%). CONCLUSIONS: The development of a cadre of district M&E Officers has contributed positively to the health information system in Botswana. In the absence of tertiary training related to health information, on-the-job training and mentoring of university graduates can be an effective approach for developing a new professional cadre of M&E expertise and for strengthening capacity within a national health system.