We found that the baseline characteristics of the patients (CD4-cells count, median age and gender) did not vary significantly across the health facilities (Table 2). However, the level of retention in care was variable across these health facilities: DT HP had the least retention in care (OR = 0.46 (0.35, 0.60), P-value = 0.000) among HPs, and BR HC and NM HC had the least retention in care (OR = 0.44 (0.28, 0.70), p-value = 0.000) among HCs in 2009/2010 (Tables 3). We also found that health facilities which had poor retention in care in 2005/6 were able to catch up with health facilities with better retention in care in 2009/10 (Figure 1). Retention in care dropped between 2005/6 and 2007/8; on the contrary, it had improved between 2007/8 and 2009/10. The variability in levels of retention in care among health facilities was less in 2009/10 than in 2006/7 (Figure 1).
In the earlier phases of the ART scale up in Ethiopia, there was a lot of attention for increasing access to ART. However, there was little attention for retaining patients in care. As a result, there was a fast growing problem of attrition of patients from the ART program in 2005/6-2007/8. It took time before it was recognized that retention in care was a real challenge for the ART program. Later, cognizant of the challenge, a lot of initiatives were implemented to improve retention in care. A “case management program” was thus introduced systematically as a pilot project in very few health facilities in 2007/8. It was afterwards scaled up in a number of health facilities, and decided to be a national program to improve retention in care in the country. A number of health facilities, which were not included in the pilot project, with poor retention in care were able to catch up with health facilities with better retention in care. This was possible as a result of diffusion of best practices through different management practices such as supportive supervisions, review meetings and experience sharing visits among health facilities [6, 10, 15].
There is a lot of evidence that poor retention in care in resource limited countries is due to factors related to health systems, community and individual patient . In a previous study we found that lack of trust in the services, distance and transport cost, nutrition, opting for alternative traditional medicines, stigma, feeling well, and lack of or inadequate family and community support mechanisms are the main reasons contributing for poor retention in care . These reasons are also described in many studies in developing countries .
Our qualitative study identified interventions implemented by health facilities and the community-based organizations to address these barriers for retention in care. Health facilities with better and improving retention in care were found to implement comprehensive packages of interventions. We categorized these interventions into four themes: (1) retention in care promoting activities by the health facility, (2) retention in care promoting activities by the community-based organizations, (3) the coordination of the retention in care promoting activities by the case manager(s), and (4) patient information systems managed by the data clerks(s). These comprehensive packages of interventions were identified to be priorities in high-performing health facilities while they were either low priorities or virtually lacking in low-performing health facilities (Table 4). Based on these themes and sub-themes that emerged from the interviews and FGDs, a framework was developed (Figure 2). The framework consists of four themes presented above and discussed below one by one.
Retention in care promoting activities by the health facility level interventions include: ensuring continuity of care (including consultations, medicines, laboratories, and others); provision of care and support services (including transport, nutrition and other related services); coordination of care within and outside the health facilities; preparedness of health care teams for the needs of patients (including clinical, communication, counseling and related skills); support for patient self-management; implementing models of care that facilitate task shifting and “multi-disciplinary team” approaches (involvement of less qualified health workers and community members); provision of adherence counseling; implementation of defaulter tracing activities; and linkage and coordination with community-based organizations. Health facilities which had high priority and focus on such and related interventions were said to have patients who are more informed, motivated and likely to adhere than the patients in health facilities where these interventions are either not priority interventions or not there at all. Moreover, these health facilities were able to identify patients at risk of poor adherence and/or retention, initiate earlier tracing of patients lost to follow-up.
Retention in care promoting activities by the community level interventions include: presence of community-based organizations which work on awareness creation and stigma reduction; mobilization and coordination of community resources; provision of complementary services like counseling, care and support; presence of family-and peer-support mechanisms; and, coordination of the care of patients with health facilities and other community-based organizations. Such kinds of services are either rarely implemented or not available around the health facilities with relatively low level of retention in care.
Patient information system was also found to be one of the building blocks for improving retention in care in health facilities with better or improving retention in care. Health facilities and community-based organizations have not only patient information and monitoring systems but also the culture of sharing and coordinating the information of patients in their catchment areas. Both health facilities and the community-based organizations have patient information and monitoring systems that enable them to identify patients at risk of poor adherence and/or retention, and take appropriate measures accordingly. The data clerk is at the center of the patient information systems.
In addition to the services and the patient information systems in place, the coordination of the care of patients was also found to be a key building block to improve retention in care. The “case manager(s)” in these health facilities are at the center of coordination of the care of patients. The “case managers” coordinate the patient care given by both health facilities and community-based organizations. Moreover, the “case managers” participate in the “multi-disciplinary team” meetings and “catchment-area” meetings. HIV/AIDS case management is a mode of service delivery for chronic illnesses such as HIV/AIDS, and involves health facilities, community-based organizations, faith-based organizations, governmental and nongovernmental organizations and other community resources. The case management program utilizes a “multi-disciplinary team” approach and a network model around its catchment .
Our findings are in line with the findings in other studies which highlight the need for comprehensive packages of interventions to improve retention in care . These interventions were started to be implemented in other chronic diseases such as diabetes and mental illness when a lot of evidence was generated that patients with chronic diseases need services which go beyond health facilities and are delivered at both home and community levels [19, 20]. However, health systems in developing countries are basically designed more for acute problems than chronic problems . Moreover, service delivery models in developing countries are labour-intensive and very much relying on physicians, in spite of the lack of highly qualified health workers in these countries [22–24]. It is therefore important that health systems in these countries adapt their health service organisation and delivery in line with the health systems realities of the countries and the life-long needs of chronic patients: delivery models which require less doctor-time and allow rational redistribution of tasks, and respond to the life-long needs of patients [22, 25–29].
Moreover, care providers are confronted with transitions (epidemiologic and technologic) that affect the patient-provider relationship with the need to redirect certain care relations towards a more horizontal partnership . The framework in Figure 2 was developed to address the needs of patients with lifelong treatment, the health systems realities of low-income countries, and in line with the chronic care model for patients with chronic illnesses [31, 32].
This study has both strengths and weaknesses. The first strength of the study is that it is a mixed methods study that aimed to identify health facilities with relatively better and less retention in care and explore how health facilities with better retention in care were able to achieve that level of retention compared to those health facilities which were not able to do that. This facilitates the design of practical models of care that improve retention in care. The second strength of the study is that it included all tiers of health facilities providing ART including tertiary hospitals, general hospitals and health centers. This can give more robust information than a study that includes only one health facility or health facilities from a limited tier of the health facilities. The third strength of the study is that a framework for improving retention is developed based on the themes that emerged from the interviews and FGDs. The first limitation of this study is that it does not estimate the cost-effectiveness of the interventions implemented by health facilities (and community-based organizations) with better retention in care compared to health facilities with less retention. The second limitation of the study is that it cannot give an estimate of the relative contribution of the different interventions implemented by the health facilities with better and improving retention in care. The third limitation of the study is that the design is not able to assess cause and effect relationship, and there might be other explanatory factors that could not be controlled or accounted for.
This study has both theoretical and practical relevance. The theoretical relevance is that it adds to the body of knowledge for interventions to improve retention in care by developing an evidence-based framework structuring the activities to improve patient retention in a resource-limited setting. The practical relevance of the study is that it is addressing the real challenge of many ART programs which are striving hard to manage and sustain them towards universal access to care and treatment services. Hence, the findings from this study will help policy makers, program managers and implementers to design and implement interventions towards better retention in care and improved patient outcomes.