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

Study design

This was an explanatory mixed methods study where the descriptive quantitative phase using secondary data was followed by a descriptive qualitative phase¹³. The theoretical framework underpinning the qualitative phase was content analysis¹⁴. 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 37,092⁸. 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 schemes¹⁵.

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).

Figure 1. Flow of PLHIV from ART registration to linking to social protection schemes in Jaipur, Sikar and Churu districts, Rajasthan, India, during January 2016 to December 2018.

PLHIV, people living with HIV; SPS, social protection schemes; CSC, Care and Support Centre; ARTC, antiretroviral treatment centre.

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 data¹⁶. 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 consensus¹⁸. The themes were derived from the data. The codes/themes were related back to the original data¹⁹.

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) guidelines²⁰.

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.

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 Table 3. The mean age was 34 (±12.8) years and 46% were female. Of 1123 registered at CSCs, 63.9% had a monthly household income below 70 USD and 53% (n=604) PLHIV had one more person with HIV in the household. At CSC registration, 467 (41.6%) had CD4 count <350 cells/mm³ (median count 364 cell/mm³), 132 (12.0%) consumed alcohol and 25% had daily usage of tobacco (smoking or chewing). Regarding the possible source of HIV transmission, in 478 (42.6%) it was reported to be heterosexual sexual transmission and in 359 (32.0%) it was reported as unknown.

Linkage to social protection schemes. The linkage to the social protection schemes is presented in Table 4. Of 1123 PLHIV registered at CSC, 1026 (91.3%) expressed willingness 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.

Qualitative phase

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.

Figure 2. Thematic analysis showing barriers in availing the social protection schemes from the perspective of PLHIV registered at CSCs in Jaipur, Sikar and Churu districts, Rajasthan, India, during January 2016 to December 2018.

PLHIV, people living with HIV; CSC, Care and Support Centre; IEC, information education and communication.

System level

Four themes were categorized here. ‘Linking Aadhaar with bank and cumbersome application process’ was consistent among all participants. The common issue was in authenticating the Aadhaar number [unique identification number provided to all Indians that is linked to a bank account] through a one-time password sent to the registered mobile number of PLHIV. The Aadhaar number facilitates the direct benefit transfer of schemes like the widow pension and Palanhar scheme. If the PLHIV changes his or her registered mobile number, then this authentication is delayed. One participant mentioned about the inconsistency of basic information in other government documents (like name from school records did not match with Aadhaar) causing delay in scheme linkage. As the bank account information needed the child’s name, the name mismatch in records resulted in delay.

“For Aadhaar update my mobile number registered with Aadhaar got lost, I have updated my new mobile number and received message but I don’t understand the message [message with one-time password details which has to be shared with the concerned department]" (Male PLHIV)

"The child’s name in school record varies with the name recorded in Bamashah document [Government of Rajasthan started this scheme to transfer financial and non-financial benefits of governmental schemes directly to recipients in a transparent way. The Bamashah card and number is made for a family with female member as the head of the family]. I have updated the name in Bamashah. ". (Male PLHIV)

‘Limited utility of travel concession’ was observed. The concession for the bus fare was limited to one trip per month. For an additional trip in the same month, the PLHIV had to pay the full fare. ‘Delayed receipt of benefit due to budget delay’ was a common observation.

" I have submitted the form for Palanhar scheme nearly 12 months ago, but due to lack of budget, I am still waiting to receive the money". (Female PLHIV)

‘Non-availability of comprehensive IEC material’ was noted. One of the important elements in accessing the schemes is the availability of the information, education and communication (IEC) material. However, there was no comprehensive IEC material available from the government and most of the PLHIV did not have adequate knowledge of all schemes. The only printed handout available was from the Vihaan containing the list of schemes and required documents.

"I know Palanhar Yojna [scheme] only. [That too,] Once [after] I heard from the other patients about this scheme". (Female PLHIV)

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.

"Nobody is there to look after the children. My mind is not working. No assistance at home". (Male PLHIV)

Perceived barriers - provider perspective. Thematic analysis showing barriers in availing the social protection schemes from the providers’ perspective is depicted in Figure 3. We identified ten themes, broadly grouped into two categories: system level and patient level.

Figure 3. Thematic analysis showing barriers in availing the social protection schemes from the perspective of CSC programme staff in Jaipur, Sikar and Churu districts, Rajasthan, India, during January 2016 to December 2018.

PLHIV, people living with HIV; CSC, Care and Support Centre; ART, antiretroviral therapy; IEC, information education and communication.

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.

"PLHIV has to appeal to SDO [sub-divisional officer] for Khadya Suraksha Yojana [Food security scheme], SDO asks why they want to avail the schemes and they have to disclose the HIV status". (Male program staff)

"Collector [ District administrator] also ordered that other than the gram sachiv [village government official] the PLHIV need not disclose their HIV status to anyone else, because the sachiv [secretary of local administrative body] is appointed by the government and the sarpanch [elected village representative] is a political post. Sachiv will think about disclosing the status before telling others, he cannot risk his job". (Male program staff)

‘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^23–26.

"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.

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 adherence³³. 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.

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.

Extended data

Figshare: Annex 1.pdf. https://doi.org/10.6084/m9.figshare.11889630.v1¹⁶.

Data are available under the terms of the Creative Commons Zero "No rights reserved" data waiver (CC0 1.0 Public domain dedication).