Original research article
A qualitative analysis of barriers to accessing HIV/AIDS-related services among newly diagnosed HIV-positive men who have sex with men in China
International Journal of STD & AIDS 2015, Vol. 26(1) 13–19 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0956462414528309 std.sagepub.com
Haochu (Howard) Li1, Eleanor Holroyd2, Xiaoming Li1 and Joseph Lau3
Abstract In China, specific HIV/AIDS-related services have been in place since 2004. However, utilisation of these services remains limited among people living with HIV. We explored barriers to accessing HIV/AIDS-related services from the perspective of newly diagnosed HIV-positive men who have sex with men. We conducted repeated in-depth interviews with 31 newly diagnosed HIV-positive men who have sex with men, using the socio-ecological framework and thematic content analysis. Multiple barriers for utilisation of HIV/AIDS-related services were identified, including perceptions of subjective health and poor quality of services, mental and emotional health problems, lack of trust and understanding of the services on offer, low economic status, lack of insurance, and high medical fees, being refused access to services, and restrictive attendance policies. The findings provide information on potential multi-level obstacles preventing newly diagnosed HIVpositive men who have sex with men to use services that they need. It is recommended that policy makers should create a trustful and non-discriminating environment and services integrating physical and mental healthcare.
Keywords HIV/AIDS, service utilisation, newly diagnosed, men who have sex with men, MSM, stigma, barriers to access, China, qualitative Date received: 26 November 2013; accepted: 19 February 2014
Introduction In recent times, the burden of disease associated with HIV/AIDS has shifted from that of a life-threatening illness/disease to that associated with a chronic condition.1 Utilisation of primary care services among people living with HIV (PLWH) was associated with reduced risk of HIV transmission and improvement of disease outcomes.2 A review showed that pre-disposing factors (e.g. race, gender, and injection drug use) and enabling factors (e.g. insurance, social support systems, housing) were strong predictors of healthcare utilisation patterns, while clinical factors (e.g. immune status, symptoms, and depression) and contextual factors (e.g. characteristics of clinicians, urban/rural residence) determined the nature and frequency of health-related services utilised.3 Service utilisation among newly diagnosed PLWH is of particular importance, as it is associated with subsequent psycho-social adjustments, mental health status, and risk of HIV transmission.4,5
In China, about 780,000 people are currently living with HIV.6 Low service utilisation rates have been documented among HIV-positive men who have sex with men (MSM) in China, with 35.2% of men not receiving any treatment in registered medical institutes and 11.4% of men not taking a CD4 test.7 Negative attitudes toward PLWH and lack of institutional 1 Pediatric Prevention Research Center, Wayne State University, Detroit, MI, USA 2 School of Health Sciences, RMIT University, Australia and Centre for Women’s Health, Gender & Society, the University of Melbourne, Melbourne, VIC, Australia 3 Jockey Club School of Public Health and Primary Care, the Chinese University of Hong Kong, Hong Kong SAR, China
Corresponding author: Joseph Lau, Jockey Club School of Public Health and Primary Care, the Chinese University of Hong Kong, Hong Kong SAR, China. Email: [email protected]
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support among healthcare providers,8–10 poverty, and health inequity11 could all be reasons inhibiting or delaying healthcare seeking. Currently HIV/AIDSrelated services targeting PLWH consist mainly of clinical services with the service providers being clinicians who have not been well trained in provision of psychosocial counseling12 and commonly have very high workloads.13 Furthermore, there is a scarcity of integrated teams consisting of clinicians, nurses, social workers, and psychologists.14 Service utilisation is a complex process that is affected by individual recipients’ cognition as well as the availability and quality of the services. In this regard, barriers to accessing HIV/AIDS-related services include both individual and social environmental factors. The socioecological model,15 emphasising the interaction between, and interdependence of, factors within and across all levels of a health problem, was therefore employed as to enable the examination of intrapersonal, interpersonal, health system, and policy factors within a Chinese context. It has been widely advocated that health-related behaviors should be understood by considering multi-level socio-ecological models16,17 and examples are found in the literature.18–20 As a special economic zone in southern China, Shenzhen is at the cutting edge of social change. It has some notable demographic features, such as its population of 13.1 million, of which over 80% were internal migrants21 and high cost of living.22 In 2010, it was estimated that there were 100,000–200,000 MSM living in Shenzhen.23 It was also reported that HIV prevalence had reached 5.3% among the MSM population; and that more than 70% of these men had sex with both men and women; and consistent condom use was low (37.1%).24 Very few qualitative studies investigating barriers to accessing HIV/AIDS-related services among newly diagnosed HIV-positive MSM exist in the international literature. The current study conducted a focused ethnography in Shenzen that aimed to go some way to address this gap.
Methods Settings and research design Ethnographic field work was conducted by the first author in Shenzhen from January to September 2010, in collaboration with a local non-government organisation (NGO)—the biggest MSM volunteer workgroup in Shenzhen with about 50 active volunteers rendering services. The NGO worked closely with the Shenzhen Centre for Disease Prevention and Control (CDC) to provide HIV/AIDS prevention and intervention services to MSM and was well connected to some grass-root groups of the PLWH. We conducted a pilot study with
additional five HIV-positive MSM and five healthcare providers and volunteers. Based on the literature and the findings of our pilot study, we refined our semistructured interview guide to include topics of HIV/AIDS-related knowledge and beliefs, medical information on the CD4 count, HIV viral load, tuberculosis (TB), hepatitis and other sexually transmitted infections (STIs), HIV/AIDS-related service seeking experiences, and adaptation process (e.g. how to cope with the HIV positive diagnosis). Ethics approval was granted by the Survey and Behavioral Research Ethics Committee in the Chinese University of Hong Kong.
Participants We used purposive sampling to recruit participants from diverse background characteristics. Eligibility criteria included participants who were 18 years of age or older, diagnosed as HIV-positive in the last 6 months (newly diagnosed), identified as an MSM, and willing and able to provide written informed consent.
Procedures The collaborating NGO contacted potential participants through their contacts and networks according to our purposive sampling scheme. Participants were informed that refusal would not affect their right to use services and that the content of the interview would be digitally recorded. Written informed consent was obtained. The men interviewed were assured about data confidentiality, use of pseudonyms, safe storage of the data, and the right to withdraw at any time without being questioned. The second interviews were conducted for each participant 3 months after the initial interviews. The initial interview was transcribed verbatim and emerging themes were recorded during analysis. Constant comparative analysis enabled the subsequent interview guide to develop further questions, or incomplete information to be explored in the second interview. A life profile approach was used, focusing on individual life narratives that provide background and context to our participants’ contemporary community life.25 Each interview lasted approximately one and a half to two hours and was conducted in a private room in the NGO’s office. Participants received RMB 500 (about USD 80) in cash after completion of the repeated interviews to compensate for their time spent and transport costs.
Analysis The digital-recorded interviews (conducted in Chinese) were transcribed verbatim by two research assistants. The utilisation of a socio-ecological perspective15
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provided a framework for analysing the complex multilevel factors that influenced the process of engagement in HIV/AIDS-related services. Thematic content analysis26 was performed using Microsoft Word. It firstly involved a preliminary reading of all the transcripts and field notes by the first author, and then the first author reported and discussed with coauthors to identify recurring themes emerging from participants’ reflections on their HIV/AIDS-related service seeking. Informative quotes relevant to the themes were grouped together by first author and discussed and synthesised by all authors. The thematic structures were further refined based on collective discussion among authors.
Results Participant characteristics A total of 31 eligible participants completed the repeated in-depth interviews (an initial interview and a follow-up interview) over the course of the field work. All participants were internal migrants. The summary of these participants’ characteristics is in Table 1.
Low utilisation of HIV/AIDS-related services In China, the CDC staff members are required to contact all PLWH by phone every 6 months to assess their current health situations and remind them to undertake regular medical checkups and treatment. However, the loss of PLWH to follow-up ranged from 26 to 50% in three districts of Shenzhen under examination. Some participants reported not taking up the follow-up medical checkups and/or the free tests for STIs, TB, hepatitis, and other infectious diseases. While most of the participants experienced mental health concerns after being diagnosed as HIV positive, only two participants (Qian and Wu) sought help from formal mental health services. The identified barriers to accessing HIV/ AIDS-related services are presented within the socioecological study framework as following.
Individual level barriers—perception and mental health status Perceptions of subjective health were important among participants who had a perceived healthy status and a perceived high CD4 count testifying to feel less likely to utilise the prescribed HIV/AIDS-related services. Jian saw himself as healthy and felt that there was no need to take up the CD4 count test: ‘‘My constitution is quite good. . . .Anyway I feel my body is okay and it is not necessary to take a test. If I
Table 1. Summary of the characteristics of participants (newly diagnosed HIV-positive MSM). Characteristics Age 18–25 26–35 36–40 Duration since diagnosis 1–2 months 3–4 months 5–6 months Occupations Office Service/seller Technician Laborer Sex worker Jobless Education College High/technological school Secondary school Monthly income (CNYa) More than 6,000 3,000–6,000 Less than 3000 No income Sexual identity Homosexual Bisexual Married ART Shenzhen residencyb
N (%) (N ¼ 31) 8 (25.81) 19 (61.29) 4 (12.90) 15 (48.39) 11 (35.49) 5 (16.13) 10 (32.26) 5 (16.13) 9 (29.03) 4 (12.90) 1 (3.23) 2 (6.45) 8 (25.81) 17 (54.84) 6 (19.35) 3 (9.68) 12 (38.71) 14 (45.16) 2 (6.45) 28 (90.32) 3 (9.68) 5 (16.13) 8(25.81) 15 (48.39)
MSM: men who have sex with men. a One US Dollar was equal to 6.80 CNY in 2010. b Shenzhen residency include both permanent and temporary residencies.
feel really bad one day, I will go to take a test. . . .It (CD4 count) is just a number. You may be high this day and suddenly get lower another day when you get a fever. . . .For me, it is a kind of self feeling to take a test or not.’’
Furthermore, Han and Yan did not see themselves as contagious and hence chose not to take the TB test, which is a free service for every newly diagnosed HIVpositive person. Han said: ‘‘After diagnosis, they informed me to take a test for TB. If I got it, they will provide me treatment. But I did not go there to check for TB. Because I felt the
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International Journal of STD & AIDS 26(1) possibility of TB contagion is not high for me. I did not have a cough.’’
Perceptions about the low quality of health services available presented another obstacle to attendance. Some participants felt that they were not receiving effective medical treatment for some diseases and subsequently stopped visiting Hospital C (the only designated hospital for PLWH in Shenzhen). For example, Jin left Hospital C when he felt that this hospital did not provide effective treatment to cure his anal fistula. Jin said: ‘‘At the beginning, I was in Hospital C. They didn’t have professional physicians and related medical equipments. I was just injected with anti-inflammatory drugs. . . .After having these injections several times, I was still in pain. I got angry, and left this hospital. It cost me more than RMB 5000 (about USD 833), but I was not cured. At last I looked for a small hospital to have the surgery done (he did not disclose his seropositive status to the medical staff there).’’
Self-reported adverse mental health status was another barrier to seeking HIV/AIDS-related services. Some participants refused to seek help from the CDC when they were in a negative emotional state or had mental health problems. While Kong’s CD4 count was 213 and his viral load was 100,000 after the diagnosis, he did not go back to undertake further CD4 count testing. Kong explained: ‘‘Anyway I feel scared. I dare not think too much about this matter. I even dare not go to take up the CD4 test. . . . I am afraid that my CD4 count would be very low and I would have a feeling that I would die soon.’’
Zhou, another participant, shared a similar experience: ‘‘I resisted it very much in my mind (after getting a result of HIV positive from a screening test). She (a CDC staff member) always asked me to go back to have a diagnostic test. I said I would rather die and I don’t care (very emotional). . . . She called many times. My attitude to her was very bad. . . .My CD4 count was only 180 at that time.’’
Inter-personal barriers—relationship between participants and service providers Establishing trust and understanding between participants and the service providers and volunteers emerged as an important subtheme. Some participants felt discriminated against by healthcare providers. Xie said,
‘‘I just went through the gate, she (a CDC staff member) immediately asked me to wear a mask, and she herself also wore a mask and gloves. I felt rejected, feeling a bit scared.’’ Zhao pointed out that ‘‘HIV-positive people felt the fear throughout, and they were still rejected by HIV-negative people, so they don’t trust them.’’ Even the NGO was not confident about whether its volunteers could effectively protect the privacy of HIV-positive MSM. Zhao recalled how the NGO leader reminded him: ‘‘Your status is special. You need to protect yourself well. The NGO has different types of people. If you tell others you are A (HIV positive), they may spread the news, and how can you live? You don’t understand others and you don’t know what others think about you. You therefore cannot tell others you are A.’’
The extent of training for NGO volunteers was a concern for participants, which was testified to influence participants’ trust in the volunteers. Some participants questioned whether volunteers were professional enough and could really understand the complex needs of PLWH. A participant (Chen) commented: ‘‘They just feel that they want to be a volunteer but their distance from PLWH is very clear. They just feel that they should go to help a group of people in need but they don’t understand such people at all, and they are not related to them.’’
Barriers due to health systems and policies Low economic status, lack of insurance, and high medical fees barred some participants from accessing chargeable healthcare. Zhou had a part-time job and had sustained a foot injury. Hei caught a skin disease. Neither of them could afford to see a doctor. Hei said, ‘‘I have a low level of education, and lack training in technology. I have to work in a small shop with a very low salary, and no insurance at all. I therefore dare not go to hospital for treatments.’’ Some participants (e.g. You, Shen, and Zhang) felt that in-patient services provided by Hospital C were expensive. About one third (10/31) of the participants did not have any kind of medical insurance. After being diagnosed as HIV positive, they were not eligible to purchase insurance from the private sector. That meant they had to pay for their healthcare by self-financing (e.g. Wei, Hei, and Yan). This was also confirmed by a media report that ‘PLWH have no place in insurance’ since there is an illegibility for HIV/AIDS.27 Even if a man has bought commercial medical insurance and
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unfortunately contracted HIV afterwards, the insurance company could terminate the policy. Currently, there is no law in China to protect the rights of PLWH to be eligible for medical services. Some hospitals in China perform HIV antibody testing for high-risk patients, such as TB or STI patients, without obtaining their informed consent; and then subsequently their HIV status becomes a reason to refuse to provide medical services. As a result, some participants were forced to visit small hospitals, without disclosing their seropositive status, in order to receive the needed treatments. In addition, while the CDC played an important role in managing PLWH, it was difficult for CDC staff to make referrals or to negotiate with hospitals for service provision. This could be attributed to the fact that CDC and hospitals in China are operated on different systems. For example, Zheng was refused medical surgery for STIs after he was tested to be HIV positive without his informed consent. He did seek help from the CDC in his hometown, and the host CDC staff were unable to successfully negotiate this support with the hospitals. In addition, being HIV positive reduced the participants’ power to negotiate with health services, due to the fear of disclosing their sero-status. Zheng said: ‘‘In our local hospitals, I did not tell the doctors I had this disease (HIV). But when they checked for STIs, they also checked for HIV. After they screened for HIV, they refused to provide me treatment. They are the local big hospitals. But they said the disinfection measures in their hospitals were not comprehensive and did not treat me. I called the local CDC and asked for help. They negotiated with hospitals for about one to two weeks, but they failed. They told me that it depended on the hospitals. If they wouldn’t provide me treatment, they could not help. ’’
Accessibility of HIV/AIDS-related services is largely determined by governmental policies. The Chinese government provides ‘‘Four Free and One Care’’28 to PLWH. In general, CDC staff would collect personal information (e.g. identification card number, home address, and phone number) from all those diagnosed as HIV positive. Based on the national ART management regulations, the Shenzhen CDC only provides free ART to those PLWH who have Shenzhen Hukou (registered permanent residence) and those PLWH who have worked in Shenzhen for at least 2 years. The latter category needs to have a temporary residential permit and have social insurance in Shenzhen. Other people need to apply for free ART and related services at the CDC where their Hukou are located. Some participants did not want to return to their hometown to receive ART and linked services.
For instance, Kong needed ART, but he became worried about disclosing his seropositive status to other people from his hometown during the application process. Kong said: ‘‘I called the CDC in my hometown. But they asked me to apply for a certificate that my family is poor and cannot afford the treatment and need help from the government. You see, if I do so, people in my hometown would all know about me (getting HIV). I would rather die instead of applying for such a certificate. I therefore never go back to them.’’
Discussion Obstacles to HIV/AIDS-related service utilisation for these MSM clearly need to be addressed. One of the primary areas for improvement on PLWH is in the accessibility and acceptability of formal mental health services. It was evident that emotional problems, including fear of disclosure, feeling rejected and being in a ‘‘low mood’’ barred participants from using HIV/ AIDS-related services. Previous studies have shown that hopelessness resulting from HIV infection is associated with delayed health seeking.29 Negative psychological states, such as depression, anxiety, and anger, would hinder the use of health services and increase the healthcare cost.30 Our data showed that there was a strong demand but a short supply for such services targeting newly diagnosed PLWH in China. It is important to enhance the availability of mental health services, including the establishment of more comprehensive and psycho-socially oriented services and training existing staff in such capacities, before utilisation of such services could be effectively promoted. Furthermore, perceptions of subjective health and perceived benefits and effectiveness of existing HIV/AIDSrelated services have shown to be factors associated with service utilisation in general. Changes in such perceptions (e.g. uselessness of follow-up services) through systematic proactive social marketing are required to increase motivation for service utilisation in this population. Interpersonal factors are important determinants of accessing HIV/AIDS-related services. Respect and trust were seen by our participants to cement the relationship between patients and their service providers. In this regard, more strategic capacity building is needed. Members of CDC and NGO need support in understanding the perspectives of the PLWH—worrying about disclosure, stigma, fear, stress, and the need to be treated with respect and dignity. The issue of quality of care and inherent empathy needs to be embedded in teaching programmes. Previous studies have shown
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that the experience of respect and diminishment of stigma on the part of the healthcare providers was linked to healthcare providers’ understanding and acknowledging the weight and force of difficult life circumstances, such as poverty, depression, and emotional pain.31 Additionally important would be up-skilling the role of the general practitioner in China as a means to promote familiar and ongoing relationships with PLWH.32 Addressing current structural and organisational barriers are equally important in promoting the utilisation of HIV/AIDS-related services. It is unlikely that medical insurance will ever extend to cover PLWH in China. Given that the Four Free and One Care policy has been in place for about 10 years, it is timely to review how this policy addresses various treatment issues faced by migrant PLWH. High proportions of HIV-positive MSM are internal migrants who face difficulties in obtaining a livelihood as well as structural problems, such as residency restriction, when receiving ART and related services. An integrated health-service system is needed to take care of the multiple health needs of HIV-positive MSM in China. In Shenzhen and in other parts of China, PLWH receive most of their medical service in one or a few hospitals designated to take care of PLWH, which are commonly not well-equipped to provide comprehensive services. Of importance is a non-discriminating and integrated healthcare system to reduce the tendency to conceal serostatus, or go without such services. Currently, HIV health service coordination between different hospitals is lacking and HIVpositive MSM are commonly refused requested services. There are limitations in this study. First, the agreed use of a digital recorder may have prohibited some participants to openly talk about their negative views of the current health services. Second, the sample size was small and sampling was not representative and therefore the results may not be generalisable to all HIVpositive MSM in Shenzhen or other parts of China. In addition, we did not recruit participants who had not contacted healthcare workers or volunteers. Third, although an interview outline was provided, not all participants received exactly the same series of questions in the same order. Despite these limitations, rich data have been provided to explain some of the barriers to accessing HIV/AIDSrelated services among newly diagnosed HIV-positive MSM in China. We identified influential factors that determine how these men access HIV/AIDS-related services and pointed out inadequacies in the current healthcare system in the provision of care to this population. The application of socio-ecological model provided a contextual framework from which recommendations for culturally sensitive and effective health services were obtained for this high-risk population.
Acknowledgements Authors thank all participants who shared their life histories and experiences, Shenzhen 258 Rainbow Workgroup and Shenzhen CDC who helped significantly in the fieldwork and access to the populations. The publication’s contents are solely the responsibility of the authors and do not necessarily represent the official view of the center or the school.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research obtained funding from the Center for Health Behaviors Research of the Jockey Club School of Public Health and Primary Care (JCSPHPC), The Chinese University of Hong Kong (CUHK), a post-graduate study grant in JCSPHPC, and the Global Scholarship Programme for Research Excellence - CNOOC Grants 2010–11 in CUHK.
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A qualitative analysis of barriers to accessing HIV/AIDS-related services among newly diagnosed HIV-positive men who have sex with men in China
International Journal of STD & AIDS 2015, Vol. 26(1) 13–19 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0956462414528309 std.sagepub.com
Haochu (Howard) Li1, Eleanor Holroyd2, Xiaoming Li1 and Joseph Lau3
Abstract In China, specific HIV/AIDS-related services have been in place since 2004. However, utilisation of these services remains limited among people living with HIV. We explored barriers to accessing HIV/AIDS-related services from the perspective of newly diagnosed HIV-positive men who have sex with men. We conducted repeated in-depth interviews with 31 newly diagnosed HIV-positive men who have sex with men, using the socio-ecological framework and thematic content analysis. Multiple barriers for utilisation of HIV/AIDS-related services were identified, including perceptions of subjective health and poor quality of services, mental and emotional health problems, lack of trust and understanding of the services on offer, low economic status, lack of insurance, and high medical fees, being refused access to services, and restrictive attendance policies. The findings provide information on potential multi-level obstacles preventing newly diagnosed HIVpositive men who have sex with men to use services that they need. It is recommended that policy makers should create a trustful and non-discriminating environment and services integrating physical and mental healthcare.
Keywords HIV/AIDS, service utilisation, newly diagnosed, men who have sex with men, MSM, stigma, barriers to access, China, qualitative Date received: 26 November 2013; accepted: 19 February 2014
Introduction In recent times, the burden of disease associated with HIV/AIDS has shifted from that of a life-threatening illness/disease to that associated with a chronic condition.1 Utilisation of primary care services among people living with HIV (PLWH) was associated with reduced risk of HIV transmission and improvement of disease outcomes.2 A review showed that pre-disposing factors (e.g. race, gender, and injection drug use) and enabling factors (e.g. insurance, social support systems, housing) were strong predictors of healthcare utilisation patterns, while clinical factors (e.g. immune status, symptoms, and depression) and contextual factors (e.g. characteristics of clinicians, urban/rural residence) determined the nature and frequency of health-related services utilised.3 Service utilisation among newly diagnosed PLWH is of particular importance, as it is associated with subsequent psycho-social adjustments, mental health status, and risk of HIV transmission.4,5
In China, about 780,000 people are currently living with HIV.6 Low service utilisation rates have been documented among HIV-positive men who have sex with men (MSM) in China, with 35.2% of men not receiving any treatment in registered medical institutes and 11.4% of men not taking a CD4 test.7 Negative attitudes toward PLWH and lack of institutional 1 Pediatric Prevention Research Center, Wayne State University, Detroit, MI, USA 2 School of Health Sciences, RMIT University, Australia and Centre for Women’s Health, Gender & Society, the University of Melbourne, Melbourne, VIC, Australia 3 Jockey Club School of Public Health and Primary Care, the Chinese University of Hong Kong, Hong Kong SAR, China
Corresponding author: Joseph Lau, Jockey Club School of Public Health and Primary Care, the Chinese University of Hong Kong, Hong Kong SAR, China. Email: [email protected]
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support among healthcare providers,8–10 poverty, and health inequity11 could all be reasons inhibiting or delaying healthcare seeking. Currently HIV/AIDSrelated services targeting PLWH consist mainly of clinical services with the service providers being clinicians who have not been well trained in provision of psychosocial counseling12 and commonly have very high workloads.13 Furthermore, there is a scarcity of integrated teams consisting of clinicians, nurses, social workers, and psychologists.14 Service utilisation is a complex process that is affected by individual recipients’ cognition as well as the availability and quality of the services. In this regard, barriers to accessing HIV/AIDS-related services include both individual and social environmental factors. The socioecological model,15 emphasising the interaction between, and interdependence of, factors within and across all levels of a health problem, was therefore employed as to enable the examination of intrapersonal, interpersonal, health system, and policy factors within a Chinese context. It has been widely advocated that health-related behaviors should be understood by considering multi-level socio-ecological models16,17 and examples are found in the literature.18–20 As a special economic zone in southern China, Shenzhen is at the cutting edge of social change. It has some notable demographic features, such as its population of 13.1 million, of which over 80% were internal migrants21 and high cost of living.22 In 2010, it was estimated that there were 100,000–200,000 MSM living in Shenzhen.23 It was also reported that HIV prevalence had reached 5.3% among the MSM population; and that more than 70% of these men had sex with both men and women; and consistent condom use was low (37.1%).24 Very few qualitative studies investigating barriers to accessing HIV/AIDS-related services among newly diagnosed HIV-positive MSM exist in the international literature. The current study conducted a focused ethnography in Shenzen that aimed to go some way to address this gap.
Methods Settings and research design Ethnographic field work was conducted by the first author in Shenzhen from January to September 2010, in collaboration with a local non-government organisation (NGO)—the biggest MSM volunteer workgroup in Shenzhen with about 50 active volunteers rendering services. The NGO worked closely with the Shenzhen Centre for Disease Prevention and Control (CDC) to provide HIV/AIDS prevention and intervention services to MSM and was well connected to some grass-root groups of the PLWH. We conducted a pilot study with
additional five HIV-positive MSM and five healthcare providers and volunteers. Based on the literature and the findings of our pilot study, we refined our semistructured interview guide to include topics of HIV/AIDS-related knowledge and beliefs, medical information on the CD4 count, HIV viral load, tuberculosis (TB), hepatitis and other sexually transmitted infections (STIs), HIV/AIDS-related service seeking experiences, and adaptation process (e.g. how to cope with the HIV positive diagnosis). Ethics approval was granted by the Survey and Behavioral Research Ethics Committee in the Chinese University of Hong Kong.
Participants We used purposive sampling to recruit participants from diverse background characteristics. Eligibility criteria included participants who were 18 years of age or older, diagnosed as HIV-positive in the last 6 months (newly diagnosed), identified as an MSM, and willing and able to provide written informed consent.
Procedures The collaborating NGO contacted potential participants through their contacts and networks according to our purposive sampling scheme. Participants were informed that refusal would not affect their right to use services and that the content of the interview would be digitally recorded. Written informed consent was obtained. The men interviewed were assured about data confidentiality, use of pseudonyms, safe storage of the data, and the right to withdraw at any time without being questioned. The second interviews were conducted for each participant 3 months after the initial interviews. The initial interview was transcribed verbatim and emerging themes were recorded during analysis. Constant comparative analysis enabled the subsequent interview guide to develop further questions, or incomplete information to be explored in the second interview. A life profile approach was used, focusing on individual life narratives that provide background and context to our participants’ contemporary community life.25 Each interview lasted approximately one and a half to two hours and was conducted in a private room in the NGO’s office. Participants received RMB 500 (about USD 80) in cash after completion of the repeated interviews to compensate for their time spent and transport costs.
Analysis The digital-recorded interviews (conducted in Chinese) were transcribed verbatim by two research assistants. The utilisation of a socio-ecological perspective15
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provided a framework for analysing the complex multilevel factors that influenced the process of engagement in HIV/AIDS-related services. Thematic content analysis26 was performed using Microsoft Word. It firstly involved a preliminary reading of all the transcripts and field notes by the first author, and then the first author reported and discussed with coauthors to identify recurring themes emerging from participants’ reflections on their HIV/AIDS-related service seeking. Informative quotes relevant to the themes were grouped together by first author and discussed and synthesised by all authors. The thematic structures were further refined based on collective discussion among authors.
Results Participant characteristics A total of 31 eligible participants completed the repeated in-depth interviews (an initial interview and a follow-up interview) over the course of the field work. All participants were internal migrants. The summary of these participants’ characteristics is in Table 1.
Low utilisation of HIV/AIDS-related services In China, the CDC staff members are required to contact all PLWH by phone every 6 months to assess their current health situations and remind them to undertake regular medical checkups and treatment. However, the loss of PLWH to follow-up ranged from 26 to 50% in three districts of Shenzhen under examination. Some participants reported not taking up the follow-up medical checkups and/or the free tests for STIs, TB, hepatitis, and other infectious diseases. While most of the participants experienced mental health concerns after being diagnosed as HIV positive, only two participants (Qian and Wu) sought help from formal mental health services. The identified barriers to accessing HIV/ AIDS-related services are presented within the socioecological study framework as following.
Individual level barriers—perception and mental health status Perceptions of subjective health were important among participants who had a perceived healthy status and a perceived high CD4 count testifying to feel less likely to utilise the prescribed HIV/AIDS-related services. Jian saw himself as healthy and felt that there was no need to take up the CD4 count test: ‘‘My constitution is quite good. . . .Anyway I feel my body is okay and it is not necessary to take a test. If I
Table 1. Summary of the characteristics of participants (newly diagnosed HIV-positive MSM). Characteristics Age 18–25 26–35 36–40 Duration since diagnosis 1–2 months 3–4 months 5–6 months Occupations Office Service/seller Technician Laborer Sex worker Jobless Education College High/technological school Secondary school Monthly income (CNYa) More than 6,000 3,000–6,000 Less than 3000 No income Sexual identity Homosexual Bisexual Married ART Shenzhen residencyb
N (%) (N ¼ 31) 8 (25.81) 19 (61.29) 4 (12.90) 15 (48.39) 11 (35.49) 5 (16.13) 10 (32.26) 5 (16.13) 9 (29.03) 4 (12.90) 1 (3.23) 2 (6.45) 8 (25.81) 17 (54.84) 6 (19.35) 3 (9.68) 12 (38.71) 14 (45.16) 2 (6.45) 28 (90.32) 3 (9.68) 5 (16.13) 8(25.81) 15 (48.39)
MSM: men who have sex with men. a One US Dollar was equal to 6.80 CNY in 2010. b Shenzhen residency include both permanent and temporary residencies.
feel really bad one day, I will go to take a test. . . .It (CD4 count) is just a number. You may be high this day and suddenly get lower another day when you get a fever. . . .For me, it is a kind of self feeling to take a test or not.’’
Furthermore, Han and Yan did not see themselves as contagious and hence chose not to take the TB test, which is a free service for every newly diagnosed HIVpositive person. Han said: ‘‘After diagnosis, they informed me to take a test for TB. If I got it, they will provide me treatment. But I did not go there to check for TB. Because I felt the
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International Journal of STD & AIDS 26(1) possibility of TB contagion is not high for me. I did not have a cough.’’
Perceptions about the low quality of health services available presented another obstacle to attendance. Some participants felt that they were not receiving effective medical treatment for some diseases and subsequently stopped visiting Hospital C (the only designated hospital for PLWH in Shenzhen). For example, Jin left Hospital C when he felt that this hospital did not provide effective treatment to cure his anal fistula. Jin said: ‘‘At the beginning, I was in Hospital C. They didn’t have professional physicians and related medical equipments. I was just injected with anti-inflammatory drugs. . . .After having these injections several times, I was still in pain. I got angry, and left this hospital. It cost me more than RMB 5000 (about USD 833), but I was not cured. At last I looked for a small hospital to have the surgery done (he did not disclose his seropositive status to the medical staff there).’’
Self-reported adverse mental health status was another barrier to seeking HIV/AIDS-related services. Some participants refused to seek help from the CDC when they were in a negative emotional state or had mental health problems. While Kong’s CD4 count was 213 and his viral load was 100,000 after the diagnosis, he did not go back to undertake further CD4 count testing. Kong explained: ‘‘Anyway I feel scared. I dare not think too much about this matter. I even dare not go to take up the CD4 test. . . . I am afraid that my CD4 count would be very low and I would have a feeling that I would die soon.’’
Zhou, another participant, shared a similar experience: ‘‘I resisted it very much in my mind (after getting a result of HIV positive from a screening test). She (a CDC staff member) always asked me to go back to have a diagnostic test. I said I would rather die and I don’t care (very emotional). . . . She called many times. My attitude to her was very bad. . . .My CD4 count was only 180 at that time.’’
Inter-personal barriers—relationship between participants and service providers Establishing trust and understanding between participants and the service providers and volunteers emerged as an important subtheme. Some participants felt discriminated against by healthcare providers. Xie said,
‘‘I just went through the gate, she (a CDC staff member) immediately asked me to wear a mask, and she herself also wore a mask and gloves. I felt rejected, feeling a bit scared.’’ Zhao pointed out that ‘‘HIV-positive people felt the fear throughout, and they were still rejected by HIV-negative people, so they don’t trust them.’’ Even the NGO was not confident about whether its volunteers could effectively protect the privacy of HIV-positive MSM. Zhao recalled how the NGO leader reminded him: ‘‘Your status is special. You need to protect yourself well. The NGO has different types of people. If you tell others you are A (HIV positive), they may spread the news, and how can you live? You don’t understand others and you don’t know what others think about you. You therefore cannot tell others you are A.’’
The extent of training for NGO volunteers was a concern for participants, which was testified to influence participants’ trust in the volunteers. Some participants questioned whether volunteers were professional enough and could really understand the complex needs of PLWH. A participant (Chen) commented: ‘‘They just feel that they want to be a volunteer but their distance from PLWH is very clear. They just feel that they should go to help a group of people in need but they don’t understand such people at all, and they are not related to them.’’
Barriers due to health systems and policies Low economic status, lack of insurance, and high medical fees barred some participants from accessing chargeable healthcare. Zhou had a part-time job and had sustained a foot injury. Hei caught a skin disease. Neither of them could afford to see a doctor. Hei said, ‘‘I have a low level of education, and lack training in technology. I have to work in a small shop with a very low salary, and no insurance at all. I therefore dare not go to hospital for treatments.’’ Some participants (e.g. You, Shen, and Zhang) felt that in-patient services provided by Hospital C were expensive. About one third (10/31) of the participants did not have any kind of medical insurance. After being diagnosed as HIV positive, they were not eligible to purchase insurance from the private sector. That meant they had to pay for their healthcare by self-financing (e.g. Wei, Hei, and Yan). This was also confirmed by a media report that ‘PLWH have no place in insurance’ since there is an illegibility for HIV/AIDS.27 Even if a man has bought commercial medical insurance and
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unfortunately contracted HIV afterwards, the insurance company could terminate the policy. Currently, there is no law in China to protect the rights of PLWH to be eligible for medical services. Some hospitals in China perform HIV antibody testing for high-risk patients, such as TB or STI patients, without obtaining their informed consent; and then subsequently their HIV status becomes a reason to refuse to provide medical services. As a result, some participants were forced to visit small hospitals, without disclosing their seropositive status, in order to receive the needed treatments. In addition, while the CDC played an important role in managing PLWH, it was difficult for CDC staff to make referrals or to negotiate with hospitals for service provision. This could be attributed to the fact that CDC and hospitals in China are operated on different systems. For example, Zheng was refused medical surgery for STIs after he was tested to be HIV positive without his informed consent. He did seek help from the CDC in his hometown, and the host CDC staff were unable to successfully negotiate this support with the hospitals. In addition, being HIV positive reduced the participants’ power to negotiate with health services, due to the fear of disclosing their sero-status. Zheng said: ‘‘In our local hospitals, I did not tell the doctors I had this disease (HIV). But when they checked for STIs, they also checked for HIV. After they screened for HIV, they refused to provide me treatment. They are the local big hospitals. But they said the disinfection measures in their hospitals were not comprehensive and did not treat me. I called the local CDC and asked for help. They negotiated with hospitals for about one to two weeks, but they failed. They told me that it depended on the hospitals. If they wouldn’t provide me treatment, they could not help. ’’
Accessibility of HIV/AIDS-related services is largely determined by governmental policies. The Chinese government provides ‘‘Four Free and One Care’’28 to PLWH. In general, CDC staff would collect personal information (e.g. identification card number, home address, and phone number) from all those diagnosed as HIV positive. Based on the national ART management regulations, the Shenzhen CDC only provides free ART to those PLWH who have Shenzhen Hukou (registered permanent residence) and those PLWH who have worked in Shenzhen for at least 2 years. The latter category needs to have a temporary residential permit and have social insurance in Shenzhen. Other people need to apply for free ART and related services at the CDC where their Hukou are located. Some participants did not want to return to their hometown to receive ART and linked services.
For instance, Kong needed ART, but he became worried about disclosing his seropositive status to other people from his hometown during the application process. Kong said: ‘‘I called the CDC in my hometown. But they asked me to apply for a certificate that my family is poor and cannot afford the treatment and need help from the government. You see, if I do so, people in my hometown would all know about me (getting HIV). I would rather die instead of applying for such a certificate. I therefore never go back to them.’’
Discussion Obstacles to HIV/AIDS-related service utilisation for these MSM clearly need to be addressed. One of the primary areas for improvement on PLWH is in the accessibility and acceptability of formal mental health services. It was evident that emotional problems, including fear of disclosure, feeling rejected and being in a ‘‘low mood’’ barred participants from using HIV/ AIDS-related services. Previous studies have shown that hopelessness resulting from HIV infection is associated with delayed health seeking.29 Negative psychological states, such as depression, anxiety, and anger, would hinder the use of health services and increase the healthcare cost.30 Our data showed that there was a strong demand but a short supply for such services targeting newly diagnosed PLWH in China. It is important to enhance the availability of mental health services, including the establishment of more comprehensive and psycho-socially oriented services and training existing staff in such capacities, before utilisation of such services could be effectively promoted. Furthermore, perceptions of subjective health and perceived benefits and effectiveness of existing HIV/AIDSrelated services have shown to be factors associated with service utilisation in general. Changes in such perceptions (e.g. uselessness of follow-up services) through systematic proactive social marketing are required to increase motivation for service utilisation in this population. Interpersonal factors are important determinants of accessing HIV/AIDS-related services. Respect and trust were seen by our participants to cement the relationship between patients and their service providers. In this regard, more strategic capacity building is needed. Members of CDC and NGO need support in understanding the perspectives of the PLWH—worrying about disclosure, stigma, fear, stress, and the need to be treated with respect and dignity. The issue of quality of care and inherent empathy needs to be embedded in teaching programmes. Previous studies have shown
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that the experience of respect and diminishment of stigma on the part of the healthcare providers was linked to healthcare providers’ understanding and acknowledging the weight and force of difficult life circumstances, such as poverty, depression, and emotional pain.31 Additionally important would be up-skilling the role of the general practitioner in China as a means to promote familiar and ongoing relationships with PLWH.32 Addressing current structural and organisational barriers are equally important in promoting the utilisation of HIV/AIDS-related services. It is unlikely that medical insurance will ever extend to cover PLWH in China. Given that the Four Free and One Care policy has been in place for about 10 years, it is timely to review how this policy addresses various treatment issues faced by migrant PLWH. High proportions of HIV-positive MSM are internal migrants who face difficulties in obtaining a livelihood as well as structural problems, such as residency restriction, when receiving ART and related services. An integrated health-service system is needed to take care of the multiple health needs of HIV-positive MSM in China. In Shenzhen and in other parts of China, PLWH receive most of their medical service in one or a few hospitals designated to take care of PLWH, which are commonly not well-equipped to provide comprehensive services. Of importance is a non-discriminating and integrated healthcare system to reduce the tendency to conceal serostatus, or go without such services. Currently, HIV health service coordination between different hospitals is lacking and HIVpositive MSM are commonly refused requested services. There are limitations in this study. First, the agreed use of a digital recorder may have prohibited some participants to openly talk about their negative views of the current health services. Second, the sample size was small and sampling was not representative and therefore the results may not be generalisable to all HIVpositive MSM in Shenzhen or other parts of China. In addition, we did not recruit participants who had not contacted healthcare workers or volunteers. Third, although an interview outline was provided, not all participants received exactly the same series of questions in the same order. Despite these limitations, rich data have been provided to explain some of the barriers to accessing HIV/AIDSrelated services among newly diagnosed HIV-positive MSM in China. We identified influential factors that determine how these men access HIV/AIDS-related services and pointed out inadequacies in the current healthcare system in the provision of care to this population. The application of socio-ecological model provided a contextual framework from which recommendations for culturally sensitive and effective health services were obtained for this high-risk population.
Acknowledgements Authors thank all participants who shared their life histories and experiences, Shenzhen 258 Rainbow Workgroup and Shenzhen CDC who helped significantly in the fieldwork and access to the populations. The publication’s contents are solely the responsibility of the authors and do not necessarily represent the official view of the center or the school.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research obtained funding from the Center for Health Behaviors Research of the Jockey Club School of Public Health and Primary Care (JCSPHPC), The Chinese University of Hong Kong (CUHK), a post-graduate study grant in JCSPHPC, and the Global Scholarship Programme for Research Excellence - CNOOC Grants 2010–11 in CUHK.
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