Background
Kenya is among the sub-Saharan countries that have embraced strategies such as HIV home-based counseling and testing (HBCT) [
1],[
2] in an effort towards ‘zero’ new infections. In addition improved HIV treatment coverage in the region has been noted [
3]. This has resulted in positive health outcomes including increased testing coverage and timely engagement in care among those found to be HIV positive [
3],[
4]. Unfortunately, studies conducted in the region show that the rates of linkage to [
3],[
5],[
6] and retention in HIV care, remain low [
3],[
7],[
8]. Linkage, the timely entry into HIV care following HIV diagnosis, is reported to be less than 50% while retention, the continuous engagement of patients in HIV care, has been shown to decrease from 86% at 12 months to 72% at 60 months [
3],[
7],[
8].
To effectively address the challenges of timely and continuous engagement of HIV patients in care, there is need for better understanding of the potential barriers across various socio-cultural environments. Previous studies have reported factors such as being male, younger in age, fears of drug side effects, busy schedules, transport costs and distance, stigma and fear of disclosure, staff shortages, and delays at the health facility as contributing to poor linkage and retention in the region [
3],[
9]-[
11]. However, few studies have specifically focused on how the structural features of health facilities present barriers to patient engagement in HIV care in sub-Saharan Africa [
12]. We believe that health facility factors may be the most amenable to intervention compared to patient factors such as transport cost, HIV stigma and fear of disclosure. Addressing factors at the structural level may also alter the socio-cultural context and result in changes to patient perceptions and attitudes regarding HIV care.
We therefore investigated patients’, caregivers’, and health care providers’ perspectives on HIV linkage and retention. We focused on communities within the Academic Model Providing Healthcare (AMPATH) program in western Kenya that provides a wide range of healthcare services including HIV prevention, treatment, and care [
13]. The specific objective of this study was to describe perceived healthcare system-level barriers to linkage and retention.
Methods
Study setting
AMPATH was initiated in 2001 as a joint partnership between Moi University School of Medicine, the Indiana University School of Medicine, and the Moi Teaching and Referral Hospital. The initial goal of the program was to establish an HIV care system to serve the needs of both urban and rural patients as well as to assess the outcomes and barriers of ART. Over the years, AMPATH has expanded to embrace primary healthcare and chronic disease management. The program has enrolled more than 150,000 HIV-infected adults and children in >65 Ministry of Health facilities and numerous satellite clinics (outreach clinics) across western Kenya. All HIV and tuberculosis-related care and treatment are provided free at initiation of care. This study was undertaken in three AMPATH sites, namely Turbo, Teso, and Chulaimbo.
Target population
This study targeted patients within the AMPATH program including patients receiving HIV, TB, and hypertension care, as well as caregivers of children with HIV, community leaders (religious leader, traditional healer, village elder, assistant chief), and healthcare workers, namely volunteer community health workers, the AMPATH safety net team (Nutritionist, Psychosocial, Outreach, Social work teams) and, healthcare providers (AMPATH clinical team, Ministry of Health staff).
Study design
This qualitative study was conducted between July 2012 and August 2013. Study participants were purposively sampled from the three AMPATH sites. In-depth interviews and focus group discussion (FGDs) were used to collect data. We adopted the social ecological model, previously used to explore engagement in HIV care at multiple levels including the intrapersonal, interpersonal, organizational, community and policy levels [
12].
Human subjects protection
Ethical approval was obtained from the Moi Teaching and Referral Hospital Institutional Research and Ethics Committee (IREC) as well as the Indiana University Institutional Review Board (IRB). Oral consent was obtained from all participants. All interview sessions were conducted in private rooms. Privacy and confidentially were assured at all times. During all interview sessions first names were used to facilitate discussions.
Study procedure
We conducted a total of 16 in-depth interviews and 26 FGDs. However for this study we focused on 16 in-depth interviews and 17 FGDs comprising of an average of 7 participants per FGD that centered on structural barriers to HIV linkage and retention. Table
1 shows the distribution of interview sessions per site. A set of interview guides were developed to explore perceived barriers at the various social ecological levels. In addition, basic socio-demographic information of age, gender, educational level and occupation was only collected for those who participated in the FGDs. The guides were then translated to Swahili, Kalenjin, and Luo. Trained research assistants identified the target groups at AMPATH health facilities and informed them about the study. Health facilities in-charges assisted with contacting HIV patients who attended the AMPATH HIV clinics. Those willing to participate in the study were referred to research assistants who were stationed in private rooms. Oral consent was obtained from all participants. The interview sessions took approximately 1 hour and were conducted in either, English, Swahili, Kalenjin, or Luo. All sessions were audio recorded and for the FGDs, scribes also recorded session proceedings. At the end of each session participants were provided with transport reimbursement of Kenya Shillings (Ksh) 200.
Table 1
Distribution of interview sessions by site
Teso | - | - | 3 | 2 |
Chulaimbo | - | - | 4 | 2 |
Turbo | - | - | 3 | 2 |
FGD sessions
|
Site
|
Patients
|
Caregivers
|
Community leaders
|
Healthcare workers
|
Teso | 4 | 1 | - | 3 |
Chulaimbo | 3 | - | - | 3 |
Turbo | 1 | 1 | - | 1 |
Data analyses
Recorded interviews were transcribed and translated to English. The data were then coded and themes related to barriers to HIV linkage and retention were identified. Ideas from different interviews were then pooled together and integrated into common themes. Concepts from these themes were generated and used to organize the presentation of the results. For validation, independent coding and identification of themes were conducted by five investigators. The final write up consisted of summaries, interpretations and textual excerpts.
Discussion
Engaging HIV patients in care, immediately after diagnosis and consistently thereafter, has a profound impact on efforts towards ‘zero new infection’ [
3],[
5],[
7],[
8]. Similar to other studies [
9],[
10],[
12], we noted a number of health facility barriers that influenced HIV care. Our study however adds to the existing literature by providing additional insight on structural barriers to linkage and retention. For example we reported barriers such as quality of post-test counseling, reception of new HIV clients, HIV drug packaging, lack of HIV care for institutionalized populations, and data discrepancies that have not been previously highlighted. The majority of barriers were reported for retention given the complex and long-term nature of HIV care and treatment. Overall barriers reflected on patients’ satisfaction with the quality of HIV care provided highlighting the need for a more patient-centered approach to HIV care that appreciates the role of the patient in care. Addressing health facility barriers may be one of the critical and primary steps in promoting linkage and retention.
The quality of post-test counseling after HIV diagnosis plays a critical role in defining patients’ care seeking behaviors [
14]. This is constructed by the level of counselor training, workload, time, and support systems for counselors [
14]. Testing programs such as HBCT provide a convenient platform where community members get tested for HIV at the household level. However, previous studies have reported that HBCT may be quite intensive, requiring extensive counseling skills and time in order to enhance linkage to care [
2]. Our findings revealed that the lack of adequate post-test counseling influenced the preparedness of individuals to initiate care. Programs providing HIV testing should consider the time and quality of post-test counseling provided in order to adequately prepare HIV positive individuals for care. Post-test counseling should be an ongoing process that extends beyond diagnosis.
HIV linkage was hampered by the poor coordination between point of HIV testing and care. In recent years, the peer navigator system has been advocated as an approach to enhance patient engagement in HIV care [
12],[
15]. Peer navigators are mostly HIV infected persons sharing similar socio-cultural environments as the patients. Their role is to enhance the awareness and utilization of available healthcare services while addressing some of the social-behavioral issues patients experience as they initiate or continue in care [
12],[
15]. Health facilities in Kenya may need to adopt this approach as one of the mechanisms to promote linkage and retention.
As supported by our findings, previous studies have cited access to healthcare facilities as a barrier to care [
8]-[
10]. Interestingly our findings revealed that this was influenced by the health facility boundaries that restricted patients living along/close to the catchment borders. Furthermore stigma associated with HIV care facilities contributed to poor linkage and retention rates. This was further facilitated by the lack of centralized healthcare services requiring HIV patients to seek care in specific HIV stigmatized clinics. Decentralization of HIV care services right at the community level by ensuring all levels of government health facilities provide adequate HIV care services is critical to addressing this concern [
16],[
17]. In addition, integration of care and treatment services across an array of diseases may be vital to eliminate discrimination of HIV patients in this setting. This should be combined with continuous HIV campaigns to address community stigma. However in doing so, there is need to redefine the health facility coverage protocols that restrict patients from receiving care in health facilities nearest to them.
Consistent with other studies in the region [
9]-[
11], our findings revealed various aspects associated with patient satisfaction with care such as delays at the clinic, long queues, favoritism, health provider’s attitudes, poor provider-patient communication, and lack of confidentiality among health providers as contributing to poor linkage and retention. Approaches such as integration of HIV in primary healthcare have been shown to improve patients’ satisfaction with care and ultimately care seeking behaviors [
18]. However there is need to ensure that patient-centered approaches are put in place in order to fully engage patients in their care. There is also need to reevaluate the interpersonal skills and capacities of HIV care providers in view of the reported poor provider-patient interactions and the possible influx of new HIV patients following enhanced testing coverage [
12].
To achieve the optimal benefits of HIV treatment, patients require consistent follow-up care. This necessitates making several clinic visits that may be overwhelming to some patients. In such cases peer navigators or case managers can be used to promote adherence to care [
12]. Furthermore, as reported in a previous study [
10], HIV infected caregivers caring for HIV infected children experienced challenges keeping all medical appointments. This was especially when the caregiver and child were given different appointment dates. The need to integrate adult and child HIV care in such situations is fundamental in order to address the physical and financial burden caregivers’ face.
AMPATH has been known for its comprehensive approach to HIV care that entails provision of nutritional supplements to food insecure and malnourished HIV patients and their entire household [
13]. Counselors providing HIV testing were reported to entice HIV positive client to care by guaranteeing that they would receive food among other benefits, once in care. Unfortunately, the lack of or end of food support presented an obstacle to care. Patients preferred health facilities providing the best care incentive package which also meant relocating from one facility to another. This raises concern over the dependency on such support services. Health program will need to critically assess the sustainability of providing incentives prior to their implementation. There is also need for collaboration among existing HIV program to avoid competing interests that negatively influence patients’ care seeking behaviors.
Finally tailoring HIV care for specialized HIV populations including most at risk populations (MARPS) is vital to addressing the unique attributes within these groups. The lack of customized care for institutionalized populations mainly schools and prisons was viewed as barrier to retention. This was coupled with stigma associated with HIV, still eminent in these institutions. HIV programs need to consider the socio- cultural environment in which patients are embedded in and tailor care for them. In addition, continuous effort to address HIV stigma across institutions should be encouraged in order to provide conducive environments for HIV care and treatment. Interestingly, ARV drug packaging was also viewed as restricting linkage and retention due to stigma associated with the packaging. Health facilities and pharmaceutical companies will need to reevaluate the antiretroviral drug packaging in light of this finding. Providing less stigmatizing drug containers that are not only convenient to carry around but also enhance proper storage of drugs, is of essence.
Given the limited evidence-based health system level approaches recommended to promote linkage and retention in the region [
12], our study provides insight on health facility barriers to HIV linkage and retention in Kenya that may be used to develop appropriate interventions. However our study is not without limitations. This was a qualitative study and we acknowledge that our findings cannot be generalized to the wider Kenyan population. It mainly presented the views of communities studied and was limited to their perceptions about AMPATH health facilities.
Acknowledgements
The authors would like to thank all the study participants for taking part in the study. We would also like to acknowledge the data entry personnel, data managers, administrative and clerical staff, for enabling the management, interpretation, and publication of these data. We are also grateful to the AMPATH clinical and administrative staff, for their dedication in caring for patients, and their attentiveness in accurately recording their patients’ data.
This research was supported in part by a grant to the AMPATH Partnership from the United States Agency for International Development as part of the President's Emergency Plan for AIDS Relief (PEPFAR). The AMPATH Partnership is grateful for the support of the United States Agency for International Development (USAID).The contents of this study are the sole responsibility of AMPATH and do not necessarily reflect the views of USAID or the United States Government.
Competing interests
The authors declare that they have no competing interests.
Authors’ contributions
JW, VN, BK, JA, and RK, made substantial contribution to the conceptualization and design, acquisition of data, analysis and interpretation of data. The first author-JW drafted the article and all authors listed played an important role in revising the manuscript for intellectual content. All authors provided final approval of the version to be published and are accountable for all aspects of the work.