Background
Linkage to care is a critical step in the HIV continuum of care [
1]. The World Health Organization (WHO) defines linkage to care as the confirmation of HIV infection or first HIV-specific clinical visit [
2]. A growing body of global literature has examined multiple factors related to the linkage to HIV care, which can be classified into three categories, including health care system factors, social factors, and individual characteristics [
3‐
5].
In China, the HIV epidemic has been expanding rapidly among men who have sex with men (MSM), accounting for 17.4% of people living with HIV (PLWH) [
6]. In order to reduce HIV infections among Chinese MSM, improved identification of unrecognized infections and timely linkage to care and treatment are critical. A modeling study conducted in China reported that if the testing rate had increased from 50 to 70% and treatment coverage for PLWH had increased to 55% (since 2013), a 25% reduction in annual number of new HIV infections by 2015 might have been achieved [
7]. However, many MSM were reported being lost to follow-up at the time of HIV confirmation and cluster of differentiation 4 (CD4) testing. For example, one study found that 21% of MSM who screened HIV-positive did not receive confirmatory testing and 34% of MSM newly diagnosed with HIV/AIDS did not receive CD4 testing within 12 months, posing significant challenges to the test-and-treat strategy [
8]. Improving outcomes along the HIV care continuum may also be particularly challenging for certain demographic subgroups such as younger individuals.
A nationwide study of HIV-infected persons in the United States found that significant disparities existed in the continuum of HIV care among different subgroups [
9]. There could be a similar situation with young Chinese MSM, due to the high incidence of HIV infection [
10] and poor HIV testing uptake being reported [
11]. In particular, this subgroup of MSM has not been targeted for HIV prevention in the past. The importance of exploring the issue of linkage to HIV care among these young Chinese MSM is therefore warranted.
In China HIV care is highly centralized with the Centers for Disease Control and Prevention (CDC) in charge of HIV/AIDS related counselling and testing. This is done through cooperation with designated hospitals to provide medical checkups and antiretroviral drugs (ARV) for PLWH [
12]. An individual who screens HIV positive and does not have a confirmatory test will not be able to receive free care and treatment services [
12]. The CDC system manages the whole HIV care continuum, including HIV screening tests, confirmatory tests, CD4 tests, follow-up after the initial diagnosis, and ARV treatment. In this process, confirmatory testing and CD4 testing after the diagnosis are crucial steps in the linkage to HIV care. The aim of this study was therefore to explore the barriers and facilitators of linkage to HIV care (i.e., uptake of confirmatory testing and CD4 testing after the HIV diagnosis) from the perspective of young adult MSM in China.
Methods
Procedure
This qualitative study was conducted in Jinan and Qingdao, two major cities in Shandong Province, China, from March to July 2015. Ethical approval was granted by Institutional Review Board of the University of North Carolina, Chapel Hill; University of California, San Francisco; Shandong University, and Shandong CDC. We defined the linkage to HIV care as completing a confirmatory testing (i.e., Western Blot, WB) or undertaking CD4 testing after the diagnosis. Based on the literature and the findings of our previous studies in China, we refined our semi-structured in-depth interview guide to add questions exploring participants’ local life experience as a tongzhi/gay and being HIV-infected in order to understand their relationships and interaction with peers, friends and healthcare staff. The interview guide featured perception, cognition, and experiences of linkage to HIV care, as well as its related psychosocial, economical, and environmental factors. Main questions included “After you were diagnosed with HIV infection, how did you feel and what did you do?” “In your point of view, what are the advantages and disadvantages of the HIV-related healthcare services, such as confirmatory testing and CD4 testing after the diagnosis?” “Did you receive these HIV-related healthcare services? Why did you receive these services/why not?” “What factors facilitate or impede your access to these HIV-related healthcare services?”
Purposive sampling scheme was adopted, which planned to recruit approximately 20 HIV-infected MSM, including about half of these MSM being linked to HIV care and another half being not linked or facing delays in their linkage to HIV care. The inclusion criteria included: (1) HIV-infected (already existed in the HIV reporting system, or confirmed with a WB, or had a positive result in ELISA), (2) men who reported to having had sex with men in the past 12 months, and (3) aged between 18 and 35 years at the time of HIV diagnosis. According to the above scheme, the local CDC worked with community-based organizations (CBOs) to source eligible participants by way of convenience through their contacts and networks. They contacted 29 potential participants who were eligible, 21 of them agreed to participate, and the other 8 potential participants refused. Potential participants were informed about the current study aiming to understand how they perceived and/or experienced HIV-related healthcare services, in particular, the uptake of confirmatory testing (i.e., WB) and CD4 testing after the diagnosis of HIV infection. After potential participants agreed to participate, appointments were set up and the interviews were arranged in a private room in the local CDC or CBO office. Participants were informed that refusal would not affect their right to use healthcare services, that the interview content would be digitally recorded and transcribed verbatim, and that privacy protection was assured. Written informed consent was then obtained. The first author conducted all of the interviews using mandarin Chinese and participants were informed not to provide their real names, working and home addresses in the interview for the purpose of confidentiality protection. Each interview lasted approximately 90–120 min. In order to compensate for participants’ time spent and transportation costs, we provided each participant 100 RMB (about $16 USD) in cash after completion of the interview. The digital recording was transcribed verbatim in Chinese by student assistants.
Data analysis
Socio-demographic data were summarized for sample description. We then conducted thematic content analysis on the transcripts. [
13] Each interview was briefly summarized immediately after completion, capturing key themes related to facilitators, barriers and suggestions related to linkage to HIV care. Two researchers independently conducted open coding of each transcript using Atlas.ti7 (a qualitative data analysis software). Coding was then compared, and differences were discussed and resolved by group discussions. By using inductive reasoning, factors facilitating or prohibiting linkage to HIV care and suggestions from participants were identified. Relevant and illustrative quotes were grouped together and synthesized. We then developed interpretive memos [
14] to better understand why participants received or didn’t receive linkage to HIV care (i.e., finishing WB or undertaking CD4 testing after the diagnosis), which involved individual factors (e.g., HIV/AIDS related knowledge and health consciousness), social factors (e.g., social support), and health care system factors (e.g., limitations in current HIV testing and counselling). The first author translated the quotes into English, and the co-authors crosschecked the accuracy and completeness of the translations.
Discussion
Few qualitative studies have investigated issues related to the linkage to HIV care from the perspective of PLWH in China, in particular delayed diagnosis, late entry care after a HIV diagnosis, and factors influencing the decision to seek care [
17,
18]. In China one study to date has examined barriers and facilitators of the linkage to and engagement in HIV care among HIV-infected MSM [
15]. However, our study goes further to explore HIV confirmatory testing and CD4 testing after a HIV diagnosis. We contend that this data contributes to an enhanced understanding of linkage to HIV care in the highly centralized context of China. We found that health literacy, stigma associated with receiving HIV care, an awareness of responsibility, social support, and trusting to relying on the CDC and government were important issues in linkage to HIV care. These issues were related to the quality of current HIV counselling and testing, service promotion, and the cost and location of these HIV services.
Our findings contend that the quality of current HIV counselling and testing needs to be improved. Our participants testified to having a lack knowledge of HIV care and their own health status, were worried about stigmatizing settings in the CDC and perceived multiple barriers to accessing HIV care (e.g., misunderstanding, stigma, isolation, psychological problems). As a result, some HIV-infected MSM reported not linking into the formalized HIV care available (e.g., not finishing WB or CD4 testing). This was seen by our informants to be related to the limitations of current HIV counselling and testing, in particular, the pre-test and post-test counselling services. Researchers have argued that HIV diagnosis alone is not enough to ensure that PLWH will get adequate and timely health care, and therefore ask for greater emphasis on the core value of linkage to HIV care in counselling and testing recommendations [
19]. Counselling immediately after HIV testing increases rates of successful referral to follow-up care [
20]. This counselling needs to be integrated with psychological counselling, in an attempt to address negative attitudes, emotions or mental health issues (e.g., depression, substance abuse) which are significant predictors of poor linkage to HIV care [
21].
It is also crucial to provide more training for HIV counselors, which contribute to high rates of linkage to HIV care [
22]. In such training, counselors should focus on maximizing HIV-infected MSMs’ capacity to obtain contemporary knowledge on HIV/AIDS and improve health consciousness. Furthermore, in order to maximize HIV counselling and testing, it is important to provide more service hours on a routine basis, and to strengthen privacy of information rights of HIV-infected MSM (e.g., providing one-on-one services in a private room).
Beside the suggested improvements to local HIV counselling and testing, it is also important to provide support services to promote linkage to HIV care. Our analysis indicates that social support from peers, families and friends, healthcare professionals, and CBO services promotes the linkage to care for these young adult HIV-infected MSM. This is consistent with studies arguing that support services, such as case management, outreach, health navigator, mental health services, motivational interviewing, and support groups or educational activities, are crucial in improving linkage to HIV care [
23,
24]. Given the characteristics of young adult MSM with HIV, it is necessary to focus on assisting these men’s engagement in the aforementioned support services. Motivational interviewing, for example, could enable HIV-infected MSM to be motivated to take care of themselves, and to see linkage to HIV care as a coping mechanism [
25]. Peer networking could be utilized for psychosocial support, healthy living, and preventing transmission of the virus to others [
26]. A recent review called for a more coherent, expansive care agenda, which should include the establishment of systems to help households and communities facilitate linkage to HIV care [
27]. Young adult MSM generally have close interactions with their peers, and CBOs are better able to link young adult MSM to confirmatory testing and subsequent CD4 testing [
28]. In this regard, improving the closer cooperation among CDC systems, communities of MSM and PLWH, and HIV-infected peers is crucial for maximizing linkages to HIV care.
The cost and location of HIV/AIDS-related services are also an important concern. The analysis shows that many HIV-infected MSM accepted the health management of HIV/AIDS in China’s CDC system and showed a willingness in trusting and relying on the government. This was expressed as expecting more service sites in the CDC system and designated hospitals, more financial support in HIV/AIDS related medical checkups, and more training and financial support for effective CBOs. Government support is crucial in linking these men to HIV care, because having public medical insurance and being self-funding were reported to be negatively associated with linkage to HIV care [
29]. It has also been reported that HIV clinic-based approaches are cost-effective at linking HIV-infected MSM to care [
30]. Initiation of care was most timely when diagnosis occurred at a testing site that also offered medical care, and improving the linkage in these sites will have the greatest effect on timely initiation of care [
31]. For those non-medical sites, it is critical to improve referral rates.
The current study is subject to some limitations. Firstly, the themes analyzed were limited by the extent to which individuals disclosed the issues that were relevant and important to them in a comparatively short time. Secondly, the sample was small and the sampling of participants was limited to social networks of local CDC and CBO. Thirdly, it was difficult to recruit HIV-infected MSM who had refused to contact the CDC or the CBO. As an alternative strategy, we recruited HIV-infected MSM who had refused to undertake WB, or lost to follow-up for CD4 testing. Finally, since this was a context specific qualitative study, there are associated transferability concerns.
Acknowledgements
The authors would like to thank the participants for sharing their experiences and stories, and Jinan CDC and Qingdao CDC for helping with the participant recruitment. The content of the article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, University of North Carolina at Chapel Hill, University of California, San Francisco, Shandong University, or Shandong CDC. We also thank Warren Miner-Williams for English editing.