Implementation of social protection schemes for people living with HIV in three districts of Rajasthan state, India – a mixed

In India, public social protection schemes for marginalized Background: populations are extended to people living with HIV (PLHIV) and their households. Care and Support Centres (CSCs) linked to antiretroviral therapy (ART) centres play a key role in linking PLHIV to the schemes. In three districts of Rajasthan, India, we assessed the linkage of PLHIV registered at CSCs (2016–18) to social protection schemes and explored PLHIV and provider perspectives into barriers and suggested solutions for improving linkage. This was an explanatory mixed method study involving a Methods: descriptive quantitative phase using secondary data, followed by a descriptive qualitative phase involving face-to-face in-depth (five PLHIV) and key informant (three CSC staff) interviews. Of 1123 registered PLHIV at CSCs, 1026 (91%) expressed Results: willingness to avail social protection schemes. Of 1026, 94% were linked to any one scheme; 52% to  , 51% to bus fare concession and 42% to Palanhar widow pension schemes. The perceived barriers were: authenticating number (unique identification number provided to all Indians using Aadhaar their registered mobile phone number), cumbersome application processes for each scheme, limited utility of travel concession, delayed and/or irregular disbursement of benefits and non-availability of comprehensive information, education and communication material with details of all schemes and their application processes. Reaching out to all PLHIV in the designated district was a huge task for outreach workers. Another important barrier was the potential disclosure of positive status to various stakeholders in order to avail the schemes. Suggested solutions were a single window default application process at ART centres with a smart card 1 2 2 3


Introduction
Globally, 36.9 million people are living with HIV (PLHIV). New HIV infections reduced from 3.4 million in 1996 to 1.8 million in 2017 1 . HIV/AIDS can push people and households into poverty by reducing household labour capacity and increasing medical expenses. The average household income is lowered by 34% in households with a PLHIV when compared to households without a PLHIV 2 . Households with PLHIV are thus more vulnerable to suffer socioeconomic shocks. HIV-related stigma and discrimination further marginalize the households affected by the virus and exclude them from essential services 2 .
While free and decentralized HIV services remove important barriers to access, other economic barriers like increased expenses for nutritious food and transport expenses, wages lost due to visits for antiretroviral therapy (ART) and social barriers, stigma and discrimination may exist [3][4][5] . Social protection helps PLHIV in overcoming these barriers 5 . According to the UNAIDS national composite policy index (2017), 109 countries stated that they had an approved social protection strategy, policy or framework; 99 were implementing various social protection schemes, and 85 countries' strategies were HIV-sensitive at least to some extent 6 . Social protection refers to "all public and private initiatives that provide income or consumption transfers to the poor, protect the vulnerable against livelihood risks and enhance the social status and rights of the marginalized; with the overall objective of reducing the economic and social vulnerability of poor, vulnerable and marginalized groups" 7 .
There are around 2.1 million PLHIV in India. The significant impact of the national AIDS control programme (NACP) has been highlighted by a decline of more than 50% in the number of new annual HIV infections during the last decade 8 . Under NACP phase IV, social protection schemes are expected to play an important role in mainstreaming PLHIV 9 . Some schemes are for all vulnerable groups (HIV sensitive), while some schemes have been started specifically for PLHIV (HIV specific) 10 .
Chapter VII, Section 15.1, of the recent HIV and AIDS Prevention and Control Act 2017 guaranteed PLHIV access to welfare schemes 11 . In 2013, the review commissioned by the International Labour Organization on social protection for PLHIV identified 26 studies on access to social protection and its impact on people living with and affected by HIV, although no studies from India were included. A report by the United Nations Development Programme on HIV sensitive social protection in four Indian states aimed to understand the utilization, facilitating and constraining factors 12 . Since then, the social protection schemes under NACP-IV have been mainstreamed with a Care and Support Centre (CSC) linked to ART centres. The CSCs facilitate PLHIV upon ART registration to avail the social protection schemes. There is limited information from India about linkage to social protection schemes among PLHIV registered at ART centres and CSCs. Even though efforts are made to mainstream and provide various services to PLHIV, there is a huge gap in evidence on the reach and effectiveness of these services. Understanding the linkage to the social protection schemes quantitatively and qualitatively is crucial for planning appropriate interventions to improve the coverage of PLHIV availing the schemes.
Hence, we aimed to understand the linkage to key social protection schemes among PLHIV registered with CSCs and explore the barriers and suggested solutions to improve linkage from provider and PLHIV perspectives.

Study design
This was an explanatory mixed methods study where the descriptive quantitative phase using secondary data was followed by a descriptive qualitative phase 13 . The theoretical framework underpinning the qualitative phase was content analysis 14 . In addition to the experiences and challenges faced by the PLHIV in availing the schemes, the qualitative phase explored the reasons for the findings of quantitative phase.

Setting
This study was conducted in three districts (Jaipur, Sikar, Churu) of Rajasthan, a state in north India during 2018-19. The estimated prevalence of HIV among general population in these districts is 0.75%, 0.0% and 0.5%, respectively. As of 2017, the total number of people on ART in the study districts was 37,092 8 . If a person is HIV-positive, post-test counselling is done and the person is referred to the nearest ART centre for clinical and immunological assessment and treatment. Treatment to PLHIV is provided through district level ART centres and all services are given free of cost.
All PLHIV are eligible to avail the state and/or central government provided (public) social protection schemes. There are seven widespread social protection schemes for PLHIV in Rajasthan and these schemes are extensions of schemes intended for vulnerable populations ( Table 1). The CSCs support the health and wellbeing of all PLHIV and their affected families, with special effort to reach those from underserved populations, including women, children and members of high-risk groups, such as female sex workers, men who have sex with men, transgender people and people who inject drugs. The 'Vihaan' project by India HIV/AIDS Alliance is a national initiative establishing and managing 350 CSCs across India, and it manages the CSCs in the three study districts (there are a total of 17 CSCs in Rajasthan). Working in coordination with nearby ART centres, CSCs serve as safe spaces for PLHIV offering services that include counselling, outreach and follow-up support, health referrals, and linkages to social welfare schemes 15 . PLHIV are counselled at the time of registration at the ART centre about the government sponsored welfare schemes and referred to the Vihaan-CSC. If the PLHIV is willing to avail any scheme, he/she will give consent to the in-charge of the Vihaan-CSC to process his/her application form on their behalf and becomes registered at the CSC. This process is voluntary. The PLHIV are given all details about the process of accessing the schemes and also informed about necessary supporting documents required (Figure 1).   Data related to key variables at registration and details on linkage to various schemes is routinely recorded in a paper-based register and single-entered into an MS Excel database at Vihaan CSC. Aggregate data is also available on a centralized Vihaan server.

Study population
For the quantitative phase, the study population was all PLHIV on ART who registered at CSCs between January 2016 and December 2018 from the study districts. For the qualitative phase, from the January to June 2018 (six months) cohort, PLHIV receiving benefits and not receiving benefits were purposively selected. To understand the experiences from the provider perspective, we included the following service providers (key informants) as they were routinely involved in contacting the PLHIV and linking them to social protection schemes: Vihaan staff at state and CSC level and outreach workers. The study participants were contacted over the phone and there were no refusals. The enrolment was stopped once saturation of findings was reached.
Data variables, sources of data and data collection For the quantitative phase, the source of data was electronic records maintained by Vihaan centrally. Baseline socio-demographic (age, gender, education, occupation, income, marital status, number of PLHIV in family) and clinical data (CD4 cell count, alcohol use, tobacco use, risk behaviour) were extracted from the CSC registers. The linkage to the various social protection schemes was assessed as of April 2019. Data analysis was carried out in June 2019.
For the qualitative phase, face-to-face interviews were conducted (June-August 2019) to understand PLHIV (in depth interviews) and provider (key informants) perspectives into the barriers and suggested solutions for improving linkage to schemes. The principal investigator (BG) is a public health professional (M.P.H.) who is trained in qualitative research methods. He conducted the face-to-face interviews in the local language (Hindi) after obtaining their written informed consent to participate in the study. Interviews were conducted at the CSC office in a private room. The principal investigator, though aware of ART services and social protection schemes, was not involved in routine programme implementation and belonged to a public health academic and research institute (external expert). A qualitative interview guide was pilot tested on three PLHIVs from the CSC office, who were not part of the final sample. A few changes were made after the pilot testing; probes were added and local terms used in the final guide. The final interview guide comprised of broad open-ended questions and is available as Extended data 16 . The interview guide was further modified based on the quantitative phase results.
Only the study participant and the principle investigator were present during the interview. Audio recording (after consent) and/or verbatim notes were taken during the interview. After the interview was over, the summary of the interview was read back to the participants to ensure participant validation.

Analysis and statistics
The electronic data obtained from the Vihaan-CSC were cleaned and exported to SPSS (version 21 IBM SPSS) for analysis. Continuous variables were summarized in terms of either mean ± SD or median (IQR) depending on the statistical distribution of data. Categorical variables were summarized using frequencies and proportions.
For face-to-face interviews, transcription and translation was done the same day based on the verbatim notes and audio recordings. Manual descriptive thematic analysis was done by two investigators (BG and HDS) 13,17 . The decision on coding rules and theme generation was done using standard procedures and in consensus 18 . The themes were derived from the data. The codes/themes were related back to the original data 19 .
Themes/categories have been reported below in single quotation marks, verbatim quotes in double quotation marks and italicized, author explanation within quotes in square brackets and respondents' details in round brackets. The findings were reported by using 'Consolidated Criteria for Reporting Qualitative Research' (COREQ) guidelines 20 .

Ethics
Ethics approval was obtained from the Institutional Ethics Committee of the IIHMR University, Jaipur, India (May 2019/2) and the Ethics Advisory Group of the International Union Against Tuberculosis and Lung Disease (The Union), Paris, France (No 127/18). As the quantitative phase of the study involved secondary data, a waiver for informed consent was sought and approved by the ethics committees. For the qualitative phase, written informed consent was obtained for participation and publication of findings and this process was approved by the ethics committees. Throughout the study, efforts were made to avoid inadvertent disclosure of participants' HIV status with others.

Results
Quantitative phase Baseline characteristics. The sociodemographic and clinical characteristics of 1123 PLHIV registered at the CSCs, stratified by study districts, are shown in Table 2 and      to be linked to schemes and of them 93.6% (n=961) were linked to at least one scheme; 51.8% (n=498) to Palanhar (cash assistance for children of PLHIV), 50.7% (n=488) to bus fare concession, 14.8% (n=143) to Antyodaya Ann Yojana (meaning scheme to provide subsidized food to the socio-economically weakest) and 41.8% (n=54) to widow pension (among 129 widows living with HIV). Overall, linkage to the social protection schemes is good, but the individual scheme linkage varies among the districts. In the case of bus fare concession, the linkage is good in Sikar and Churu, but in Jaipur it is very poor. Linkage to Palanhar and widow pension schemes are good in Jaipur but poor in the other two districts. The variation in the linkages to the schemes prompted questions about the barriers in linking the schemes at a PLHIV and CSC level. Table 5 depicts the participant characteristics and duration of each one-to-one interview. In the context of linking and accessing the social protection schemes, we present the results in two parts: perceived barriers and suggested solutions by the PLHIV and program staff.

Perceived barriers -PLHIV perspective. Thematic analysis
showing barriers in availing the social protection schemes from the perspective of PLHIV are depicted in Figure 2. We identified five themes, broadly grouped into two categories: system level and patient level.

Patient level
'Lack of family support' in linking to the schemes is a barrier due to stigma and discrimination at the family and community level. Apart from the system level support, the PLHIV need significant support from the family in overcoming the economic burden caused due to loss of employment and social stigma.  from the providers' perspective is depicted in Figure 3. We identified ten themes, broadly grouped into two categories: system level and patient level.

System level
As expressed by the PLHIV, the program staff also expressed the same barriers related to -'linking Aadhaar with bank and cumbersome application process', 'limited utility of travel concession', 'delayed/irregular disbursement of benefit' and 'lack of availability of comprehensive IEC material'.
'Renewal' of certain schemes [Palanhar, Bus fare concession] is essential for receiving continued benefits. The program staff reported that many PLHIV forgot to submit the renewal documents, after which the benefit was discontinued.
"Every year they [PLHIV] have to submit the school enrollment certificate through online, failing to which they [beneficiary] cannot receive the benefit". (Male program staff) The application process also required repeated visits to offices by PLHIVs after their application, leading to long periods of time between application and linkage. PLHIV and outreach workers had to make multiple visits to the office due to non-availability of the staff.
"The department has few staff to run the office so once the form is filled and submitted, we [program staff] have to visit again and again to the offices whether the scheme started or not." (Male outreach worker) "Pension has a long lead time, it will take 3 to 4 months to get the pension". (Male program staff) The ART centres had single hoardings / posters summarizing all the schemes, but handouts that could be given to PLHIV were unavailable at ART centres. Reaching out to all the PLHIV in the designated district by the outreach worker was a huge task.

"We do not have much resources for mobilization, somehow this is one of the reasons of clients lost to follow-up". (Female program staff)
Another important barrier was the potential 'disclosure of positive status'. The PLHIV did not want to disclose their status due to fear of discrimination and social exclusion and preferred to travel to far away health facility, resulting in the burden of transportation expenses 21,22 . Though all the schemes applicable to below poverty line families have been extended to PLHIV, in many times the status had to be disclosed to avail the scheme. 'Reluctant doctors', as described by the program staff, discriminated against the PLHIV and this is a major barrier in accessing health care services. Evidence suggests that the PLHIV are prone to being discriminated against by the health workers at health facilities [23][24][25][26] .
"Big challenge is with the government hospital. The doctors are not operating the PLHIV after knowing the HIV status".
(Male program staff)

Patient level
The program staff perceived that 'non-disclosure of HIV status to spouse causing in delay of treatment 27,28 , delay in submitting the renewal documents' for schemes like Palanhar that need annual renewal and 'irregular visits to ART centre' due to transport charges were barriers in linking the schemes.
"We have many instances reported in which the wife is unaware of the husband's HIV status". (Female program staff) "Irregularity in applying for renewal for the scheme, may be due to community ignorance" (Male program staff) Suggested solutions. The suggested solutions are described as two themes from the PLHIV perspective (Table 6) and seven themes from provider perspective (Table 7).

Documentation
The PLHIV suggested a simpler process for scheme application and the providers suggested a centralized process at ART centre. A procedure change was suggested by the providers in which a unique smart card could be issued at ART centre. This smart card should be linked with Aadhaar or a bank account and used for availing all the schemes. Special camps for PLHIV run by the government to redress the issues and barriers in linking and availing the schemes by the PLHIV were other suggested solutions.

Accessibility
In the process of continuous and uninterrupted disbursement of scheme benefits, adequate budget allocation is necessary. Awareness generation among the PLHIV, officials and at the community level about the schemes through strong comprehensive IEC material [all schemes' related information  in single pamphlet] should be made available widely. In addition, a resource book on social protection schemes was also recommended.

Discussion
This is one of the few mixed methods studies on this topic conducted in India. All PLHIV are eligible to avail the state and/or central government provided social protection schemes. These schemes are extensions of schemes intended for marginalized populations. Of all other schemes available in Rajasthan, bus fare concession, pension and the Palanhar scheme were the most widely accepted and linked schemes by PLHIV. Even with certain limitations like limited travel (one trip in a month using bus fare concession), long period of time before the receipt of benefits (2-3 months for pension) and complex documentation process (Palanhar), PLHIV are considering these schemes.
Verification of Aadhaar and the complicated application process for linking to the schemes and renewal were the key barriers. A PLHIV has to submit 7-9 different supporting documents for availing the schemes over repeated visits, and delayed benefit and the need for renewal of certain schemes are causing distress to PLHIV. Both PLHIV and the program staff reported that the process is not user friendly.
The ART centre is the first point of information on social protection schemes and CSCs play a key role in linking to the schemes. Very limited comprehensive IEC material related to social protection schemes was available at the ART centres and CSCs.
One of the key areas of the CSCs is community mobilization. Due to lack of adequate funds and human resources, the program staff (CSC) were not able to visit all the PLHIV at village level in a timely manner. The care and support centre has done an impressive job in linking the social protection schemes to the PLHIV who consented to them; however, since the ART centre is the first point of contact and also a sustained point of interaction, it is felt that ART centre must play a lead role in facilitating the linkage of social protection schemes.

Recommendations and policy implications
The investigators recommend the following. First, a single window default application process at ART centres could be established, providing PLHIV with a smart card. The registration at this window can enable the PLHIV to access multiple schemes as per their eligibility with the help of smart card. This window can help the PLHIV in choosing and applying to the schemes with ART registration as a basic requirement.
Second, a state or national level direct benefit transfer (DBT) scheme for PLHIV upon registering at the ART centre could be considered, like Nikshay Poshan Yojana, where all the notified tuberculosis patients under treatment are eligible for incentives 29, 30 . The DBT may be in the form of conditional or unconditional transfers (cash/food). Evidence from South Africa 31,32 revealed that the HIV-risk has been reduced among adolescent girls and boys with the model of "cash plus care" (cash transfers with psychological support). A cross-sectional study in Cameroon found that financial barriers decrease ART adherence 33 . Household economic strengthening interventions can help the PLHIV in meeting the direct non-medical and indirect costs (loss of wages due to sickness absenteeism) 34 .
Recently, initiatives of the state government for relaxation of the age criteria for the widow pension scheme to all HIV positive widows has been an important enabling factor for widows to avail the scheme.

Limitations
There are some limitations of the study. We did not have data for PLHIV who did not register at the CSC; therefore, the true picture of linkage among PLHIV registered at ART centres may be even lower and we were not able to make observations on that aspect. Delays in linkage were not captured quantitatively. We did not interview the key stakeholders (the government departments) who are responsible for delivering the schemes.

Future research
More studies need to be conducted on the impact of linkage to social protection schemes on the lives of PLHIV. A pilot intervention to test the suggested solutions and the impact on linkages to the schemes is recommended.

Conclusions
The study was able to identify the barriers perceived by the PLHIV and providers. CSCs have been by far the major facilitators in linking the schemes. The ART centres did not seem to play a significant role in facilitating the social protection schemes, except providing ART. Comprehensive IEC need to be developed and widely circulated at all levels of service delivery. There is an urgent need to address these barriers to enhance linkage to social protection schemes.

Underlying data
The quantitative and qualitative data that support the findings of this study can be obtained from India HIV/AIDS Alliance. These data are not publicly available due to concerns that the data could potentially disclose individuals' identities. Data are, however, available upon request to researchers for the purpose of further academic research from the corresponding author (ghoshbg@gmail.com) and with permission of India HIV/AIDS Alliance.