Mixed method approach for determining factors associated with late presentation to HIV/AIDS care in southern IndiaUN Yadav1, V Chandrasekharan1, V Guddattu2, JRJH Gruiskens3
1 Department of Public Health, Manipal University, Manipal, Karnataka, India
2 Department of Statistics, Manipal University, Manipal, Karnataka, India
3 CAPHRI School of Public Health and Preventive Medicine, Maastricht University, Netherlands
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0022-3859.183169
Source of Support: None, Conflict of Interest: None
Background: Early diagnosis and treatment of human Immunodeficiency virus (HIV) is not only beneficial for the people living with HIV/acquired immunodeficiency syndrome (AIDS) (PLHA) but for the public and society as well. The study was aimed to identify the factors associated with late presentation to HIV/AIDS care. Materials and Methods: A facility-based unmatched case-control (1:1) study along with in-depth qualitative assessment was conducted at an ART Plus center at a district hospital, Udupi, southern India. A sample of 320 HIV patients (160 cases and 160 controls) was selected randomly between February and July 2014. Information regarding the patients were collected using an interviewer-administered semi-structured questionnaire. The qualitative component was assessed by in-depth interviews of 4 health professionals and 12 HIV-positive patients who were late for HIV care. The quantitative data were analyzed using Statistical Package for the Social Sciences (SPSS) version 15.0. The technique of thematic analysis was adopted for the analysis of qualitative data. Results: HIV-positive individuals who lived with families [odds ratio (OR) = 5.11], the patients having non-AIDS comorbidities [OR= 2.19, 95% confidence interval (CI): 1.09-4.40], the patients who perceived fear of losing family [OR = 5.00, 95% CI: 2.17-11.49], the patients who perceived fear that their status will be ruined in the community [OR= 2.00, 95% CI: 1.01-3.97], the patients who perceived fear of side effects of ART medications [OR = 4.3, 95% CI: 2.65-11.33], the patients who perceived fear of losing confidentiality [OR = 4.94, 95% CI: 2.54-9.59], the patients those who lack information available on government services [OR = 4.12, 95% CI: 2.127-8.005], and the patients who consumed alcohol [OR= 3.52, 95% CI: 1.83-6.77] were found to be independently associated with the late presentation to HIV/AIDS care after adjusting for all known confounders in a multivariable analysis. The qualitative summary showed that the perceived HIV stigma, inadequate health education, lack of awareness on available government services, psychological problems, alcohol use, asymptomatic conditions, and financial problems are major barriers to access care early for the late presenters. Conclusion: The identified factors can be utilized for the formulation of policies and interventions by promoting early diagnoses and addressing special concerns such as stigma, disclosure, health education, and awareness.
Keywords: Factor associated, human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), late presentation, people living with HIV/AIDS (PLHA), stigma
Human immunodeficiency virus (HIV), the causative agent of acquired immunodeficiency syndrome (AIDS), has posed a great challenge to public health.  It causes the irreversible breakdown of defense mechanisms, making the patient prey to opportunistic infections and non-AIDS morbidity, and eventually it can lead to death. , More than 95% of the HIV-infected people now live in the developing world and sub-Saharan Africa.  As per the 2012 HIV estimates, in India there are 2.083 million people living with HIV/AIDS (PLHA) with an adult prevalence of 0.27% in 2011. ,
The 2013 World Health Organization (WHO) recommendations state that antiretroviral therapy (ART) can be initiated early, especially when the cluster of differentiation 4 (CD4) lymphocyte count is 500 cells/mm 3 .  While reasons for presenting late to HIV/AIDS care has been somewhat explored, relevant data on late presenters to HIV care are scarce. ,, Delays in HIV can have serious public health impact because of the loss of opportunities to prevent further transmission resulting in poorer outcomes and posing higher financial strain on national health services , notwithstanding the higher risk of contracting opportunistic infections. ,,
Understanding why some PLHA present late to HIV/AIDS care would be the initial step to address the problem of late presentation in India. The present study attempted to explore the reasons behind late presentation for PLHA to obtain care at a district ART Plus center, in Udupi, coastal Karnataka.
The study was conducted in a district ART Plus center in Udupi, situated in the southern part of Karnataka, India.
It is a facility-based unmatched case-control (1:1) study of the HIV-positive patients registered at a district ART Plus center in southern India; a qualitative component was added to it to achieve the objectives of the study.
Ethical approval was obtained from the Institutional Ethics Committee (IEC: 75/2014), Kasturba Medical College. written, informed consent were obtained from all the participants prior to conducting the interviews.
Operational definition 
Cases included HIV-positive individuals aged 18 years and above with WHO clinical stage III or IV irrespective of CD4 lymphocyte count or with a CD4 lymphocyte count of less than 200 cells/μL irrespective of clinical staging at the time of first presentation to the ART Plus center.
Controls included HIV-positive individuals aged 18 years and above with WHO stage I or II and a CD4 lymphocyte count of 200 cells/μL or more at the time of first presentation to the ART Plus center.
Sample size for the quantitative component was calculated assuming 95% confidence interval (CI), 80% power, 58% literacy level among controls, 5% nonresponse rate and case-control ratio of 1:1 to detect odds ratio (OR) of 1.5. The sample size was calculated to be 320 including 160 cases and 160 controls for conducting the study.
The list of the study population was obtained from the center form which cases and controls were selected using the simple random method. The patients who entered stages III and IV after registering at the center during stages I and II were not included in the sampling frame. For the qualitative component of the study, 12 PLHA who presented late and 4 health professionals at the center were interviewed with the help of two trained translators. The interviews were recorded using an audio recorder after obtaining informed consents from all the interviewees.
Quantitative data were collected using an interviewer administered pretested semi-structured questionnaire. The validity of the tool was checked by experts working in the field of HIV/AIDS. An interview guide was also developed to collect qualitative information on factors influencing the late presentation.
Forward LR binomial logistic regression was performed to assess the independent factors among those showing statistically significant in univariate analysis (P < 0.05). The qualitative data were transcribed and looked for patterns among the participants. Further the patterns and sub-themes were coded and the thematic analysis was performed.
A total of 160 cases and 160 controls were included in the study with a response rate of 100%. Of the total, 113 (70.6%) cases and 84 (52.5%) controls were males. The age of the participants in the case group ranged from 19 years to 60 years with a mean age of 39.71 (±8.79) years. Similarly, age of participants in the control group ranged from 19 years to 64 years with a mean age of 36.81 (±8.19) years. In both study groups, being married and practicing Hinduism emerged dominant. About 21.9% cases were illiterate compared to only 14.4% in the control group. Primary and secondary education level was low both in case and control groups. Of the cases, 31.2% were semi-skilled workers and were involved in daily wages or hotel work followed by 29.4% who formed the skilled workforce, while 26.2% were unemployed. The median CD4 count for late and early presenters were found be 138.50 cells/mm 3 (IQR: 93.25-222.50) and 350 cells/mm 3 interquartile range (IQR: 294-449), respectively.
Factors found to be independently associated with late presentation after performing multivariable analysis are shown in [Table 1]. Late presentation to the HIV/AIDS care was found to be higher among the HIV-positive individuals who lived with their families [OR = 5.11, 95% CI: 1.90-13.77], the patients having non-AIDS related comorbidities [OR = 2.19 95% CI: 1.098-4.405], the individuals lacking information on government services [OR = 4.12, 95% CI: 2.127-8.005], the patients who perceived fear of losing family [OR = 5.00, 95% CI: 2.174-11.499], the patients who perceived fear of losing the status in the community [OR = 2.002, 95% CI: 1.010-3.979], the patients who perceived fear of losing confidentiality [OR = 4.94, 95% CI: 2.545-9.598], the patients who perceived fear of side effects of the ART medications [OR = 4.325, 95% CI: 1.650-11.332], and the participants who consumed alcohol [OR = 3.525, 95% CI: 1.834-6.77].
The participants enrolled in the study were aged between 26 years and 58 years. Seven participants were males and five were females. Three themes were identified based on the coding of the responses obtained from the interviews. The results were presented following thematic analysis.
Cross-cutting issues in HIV/AIDS: Stigma and discrimination
Stigma was found to be a major barrier for presenting late to the HIV care (75%). On probing one of the participants recounted the reason for delayed presentation to the HIV/AIDS care as:
"I was very normal when I was here. I went to Mumbai to seek a job. I don't know when I exactly got the disease. I belong to very reputed family so I didn't disclose my status because of fear of rejection from spouse, friend, family and society. HIV is sexually related...Questions will be raised on my sexual behavior. I felt family status will be washout, so I kept quiet for three years." (IDI, Male 39)
Four out of five female participants reported they contracted HIV from their spouse. Health-service providers highlighted the perceived stigma at all social levels, that is, individual, family, and community level. Of the 12 participants, only 8 had disclosed their status to their families and their spouse. Providers emphasized nondisclosure by the male partners influencing late utilization of services by the women. One of the providers explained his perspective as: "The patients have to face lots of problem if they disclose their status. They always want to get transferred to different districts because of stigma. It's the root cause for the delay into the care.0" (IDI, Female, 36)
Diverse beliefs regarding HIV and its treatment
Lack of information about symptoms and the belief that AIDS is incurable contribute to late presentation. Thoughts of an unmarried participant:
"I got tested positive five years ago. I had decided not to take treatment because I know its incurable....Later my weak health status dragged me to start treatment." (IDI, Male, 32)
One provider opined that asymptomatic conditions are responsible for the delay presentation stating: "In my view, stigma is major barrier but sometimes asymptomatic might play role. There are very few cases of asymptomatic condition. They may not access the services before showing signs and symptoms." (IDI, Male, 58)
Concentric behavior, information, and economic barriers
Lack of information on free government services and about the disease, alcoholism among the male participants, and economic problems also posed barriers. All the male participants reported they consumed alcohol prior to the presentation to the HIV/AIDS care.
One health-care provider stated "HIV positive individuals who used to involve in risky behavior such as FSM, MSM and alcoholics seek care late. Most of them are in their own world and think nothing will happen to them. There are still a few cases, who in spite of taking drugs they are also taking alcohol so it's very difficult to monitor their liver." (IDI, Male, 58).
The quantitative and qualitative findings revealed that the factors such as perceived HIV stigma, lack of awareness on available government services, non-AIDS comorbid conditions, asymptomatic conditions, and being alcohol users are attributed to the late presentation late to HIV/AIDS care.
Late presentation to the HIV/AIDS care is a well-recognized and serious public health problem. However, scientific knowledge regarding this problem in India is still lacking. In the present study, we explored different factors associated with delayed presentation to care. Cohort data analysis performed in the Indian setting showed that 83.37% were late presenters, and the factors associated with late presentation were male gender, age above 45 years, and HIV infection acquired through heterosexual contact.  There are a few studies , conducted in India on late presentation to HIV/AIDS care, but no studies explored the social factors that may play a role on late presentation.
Independent association was seen between HIV-infected individuals living in families and late presentation to the HIV/AIDS care and these findings are supported by previous studies from Ethiopia, Switzerland, and Uganda. ,, HIV-positive individuals having comorbidities showed significant association with late presentation comparable similar studies. ,, Qualitative results also point toward the need to offer HIV testing confidentially at other settings.
An association was found between the lack of information on available government services and late presenters, and the results were consistent with the findings from other studies. ,, HIV-positive individuals, who perceived fear of losing family, status in the community, or confidentiality, were more likely to present late with findings showing consistency with results from Venezuela  and Uganda.  Results from the present study indicate perceived stigma among PLHA to be one of the main barrier for seeking early care. HIV-related stigma and discrimination, even after three decades, continue to remain as a central barrier for health-seeking services for PLHA. ,, Therefore, it is imperative to fight against the stigma and discrimination on HIV/AIDS at individual, family, and community levels in order to remove sociocultural barriers to access of care.
Perceived fear of side effects to ART medication and late presentation to HIV/AIDS care was found with similar results from studies conducted in Mozambique,  Uganda,  Ethiopia,  and Nepal.  Lastly, amongst the behavioral factors, alcohol users were significantly associated with late presentation to HIV/AIDS care depicting a lack of readiness toward behavioral change. Qualitative findings from the present study as well as previous studies have confirmed this finding. ,,,
Despite the strengths of the study in utilizing a case-control approach and using mixed methods, the study is not devoid of limitations. The data were gathered only from a government care setting that would not represent the characteristics of HIV-positive individuals who quit ART treatment or never attended the ART clinic or those who might be seeking treatment in private care settings.
We would like to give earnest thanks to Department of Public Health, Manipal University and District Health office, Udupi for giving permission to conduct the study. Special thank goes to all the participants who enthusiastically participated and shared their information in this study, without whose co-operation this study would not have materialized. I would like to acknowledge CNV Sai Bharatha and Garima Verma who helped me in data collection.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.