Unveiling the unseen: Exploring unmet needs among people living with HIV in Chittoor, Andhra Pradesh, India

doi:10.21203/rs.3.rs-4991493/v1

Background and Objective: Discrimination, stigma, and social isolation pervade Indian society, significantly affecting HIV care outcomes. This study aims to investigate the perceived unmet needs of individuals living with HIV (PLWH).

Methods: This mixed-method study enrolled adult PLWH from ART centers in Chittoor district, Andhra Pradesh. Data collection involved semi-structured interviews using a pre-tested questionnaire. Analysis encompassed descriptive and thematic approaches.

Results: Among the 94 participants, the mean age was 39 years (SD 12 years), and the average duration of HIV diagnosis was 8 years (SD 5 years). The majority were female (n=65, 69%) and residents of rural areas (n=74, 78.7%). While financial needs were most prevalent, other pressing concerns included employment, child's education, housing, nutrition, healthcare, and travel. Participants voiced apprehensions about administrative hurdles and varying degrees of social challenges, such as stigma and discrimination, when accessing social protection services.

Conclusion: PLWH exhibit diverse socio-economic needs for themselves and their families, many of which remain unmet due to multifaceted bottlenecks, encompassing administrative complexities, social barriers, and perceived stigma.

Discrimination

Family support

People living with HIV

Social protection

Social support

Stigma

Infection due to Human Immuno Deficiency Virus (HIV) considered a manageable chronic health condition due to the growing availability of effective HIV diagnosis, treatment, and care, including treatment for opportunistic infections (OIs). (1)] As a result, individuals with HIV can enjoy long, healthy lives. With the increase in longevity, the need of the PLWH has changed over time. The needs of PLWH are multifaceted and complex. (2–5)] (Addressing these needs are directly linked to the positive treatment outcome. (3)] Hence, the changing need of this vulnerable group must be accounted for in HIV care policy. The fundamental principle of the Sustainable Development Goals (SDGs) is to ensure that no one is excluded. To put an end to the AIDS epidemic, it is crucial to address the needs of individuals living with and affected by HIV, as well as the determinants of health and vulnerability. People living with HIV (PLWH) are frequently discriminated against, marginalized, and affected by inequality and instability, often living in fragile communities. (1)]

The lack of social support for the HIV-affected population in India is a significant barrier to their overall health and well-being. Discrimination, stigma, and isolation are prevalent in Indian society, leading to negative impact in HIV care. Social support plays a crucial role in improving treatment outcomes among people living with HIV/AIDS in India. (6–9)] Access to social support services remains limited, especially in rural areas. (10) Moreover, there is a lack of knowledge and awareness about HIV/AIDS among the general population, which further perpetuates stigma and discrimination. (11)] In India, majority of the high burden states have provision for social security schemes but these are non-uniform, often top-down and do not consider the need of the group. (12)] Social support programs that are culturally appropriate and tailored to the specific needs of the HIV-affected population are necessary to mitigate the challenges faced by them. (12)] The aim of the study was to explore the perceived unmet needs of the PLWH. Identifying unmet needs of PLWH can aid in prioritizing evidence-based strategies and planning a roadmap for timely, high-quality reporting. This knowledge can help the policy makers target areas for greatest impact, allocate healthcare resources and public/private assistance, and reduce PLWH unmet needs. It can also improve global understanding of the response to the HIV epidemic, progress towards achieving commitments and global targets, that are linked to SDGs.

Study design: It is an embedded mixed methods design, where qualitative data was collected secondary to quantitative data and the interpretation was qualitatively driven.

Study duration: The study was conducted betweenFebruary 2021 and January 2022.

Study setting: We conducted the study at three ART centres in Chittoor district, namely Tirupati, Chittoor and Madanapalli.

Study participants: We recruited adult PLWH whose HIV status was diagnosed at least one year before recruitment and registered at ART centers. To explore the ways to meet unmet needs, we conducted in depth interviews with the stake holders including the medical officers working at ART, field workers working for PLWH, volunteers working under NGOs and staff at village secretariate.

Sampling technique and sample size: Purposive sampling was done to recruit the participants. We estimated a sample size of 96 PLHW participants considering expected proportion of people expressing unmet need in any form as 0.5, 10% absolute precision at 95% confidence interval and the calculated size of sample is 96. The number of in-depth interviews was based on the collective judgement of research team about reaching the point of saturation.

Study variable: Unmet need of PLWH was the main outcome variable. A need is considered to be unmet if the participants reported a service or support was needed or desired but not received, during the 12 months preceding the interview whereas a need is considered to be met if it had been fulfilled as per PLWH self-report.

Land patta:It is a revenue record of a piece of land which contains details about the area of the land, size, ownership of the property. It is issued by the local government (Tshildhar/Village Administrative Officer).

Data collection: Interviews were conducted by using a pre-tested semi-structured interview schedule (programmed in Open data kit (ODK)) in a convenient place as suggested by the participants. Information on demographic details and unmet needs of PLWH were collected. Open ended questions were framed within the interview schedule. The open-ended questions were audio-recorded after taking written informed consent from the participants. A few participants preferred telephonic interview, for whom verbal consent was obtained.

Additionally, five in-depth interviews were conducted among a medical officer working at ART, a field worker working for PLWH, a volunteer working under NGO, an HIV-affected person and a staff working at village secretariate. All the interviews were audio recorded with written informed consent of the participants.

Data entry and analysis: Quantitative data was analyzed using SPSS version 21 by applying descriptive statistics. Qualitative data was analyzed by developing a study specific transcription protocol. One of the researchers (KU) transcribed the qualitative responses manually. A bilingual investigator (KH) in our team listened to the audio files and followed along with the transcripts to ensure adherence to the transcription requirements specified in the protocol. Two translators (KKR, SC) with expertise in the source (Telugu) and target languages (English) were the translators of the transcribed data. Translation review and verification were done by the project PI (principal investigator) (TJ). Two researchers (KKR, KU) independently coded the translated responses. A third researcher (SC) acted as a referee to resolve the conflicts in coding. A uniform coding plan was applied for all the scripts.

Human participant protection: Institutional ethics committee clearance was obtained from the institutional review board (Ref: IEC07/AIMSR/07/2020 dated 30/05/2020). Written / verbal informed consent was taken from every participant before data collection. Every member of the project team was trained in Good Clinical Practice (GCP) and the standard operating procedures (SOP).

A total of 94 participants were recruited for the study. The mean age of the participants was 39 years (± 12 years). The majority were females (n=65, 69%), residing at rural areas (n=74, 78.7%) with an average duration of living with HIV 8 years (±5 years). Average monthly income was 8930 Indian Rupees (INR) (±9535 INR).

Unmet needs of PLWH:

People living with HIV expressed different unmet needs which were categorised into certain domains. The Major domains which we identified are financial, employment, child’s education, housing, nutrition, health, travel, and assistance for marriage. (Table 1) While the need is largely met in the areas of travel and health; financial need is the most prominent in this population which is mostly unmet. (Table 3) The participants have expressed concern on administrative challenges in availing the services that include- inadequate information (n=76, 80.8%), and slow processing of application (n=71, 75.5%). (Table 2) Also, the participants faced varying degree of social challenges including stigma and discrimination in availing such services. (Table 4)

Financial need

The commonest need expressed by the participants was financial assistance (n=55, 58.5%) either in terms of pension benefit or subsidized bank loans. A 28-year-old female participant at Chittoor ART said “I am 28 years old having a girl child, tested positive three years back during my antenatal check-ups. My husband left me after knowing my HIV status. I am alone with my child now. I don’t even have a house to stay. I used to sell flowers at a temple but during COVID-19 pandemic we were not allowed to sell, which made me struggle a lot. I spent days with single meal in a day (participant started crying). It is a great help for me if I receive some monitory assistance either in terms of pension or bank loan.”

When enquired with a health care worker (HCW), she replied that ”no newly diagnosed PLWH are receiving financial benefit since 2012”. The village secretariate staff (VSS) who is responsible to apply for pension aid at village-level, mentioned that “Though the state official website shows ART pension benefit for the PLWH, none of them are receiving the benefit for the past six months. In the online application process, the pension eligibility category for PLWH is not active in the drop-down box”.

It is given to understand from a VSS that, due to recent policy changes, the PLWH who were receiving double pension (Pensions under two different schemes) have been excluded from one of the benefits due to policy change in eligibility criteria. There were incidences where a PLWH receiving ART pension alone were also excluded from benefit without a clear reason. A District program manager at the State AIDS Control Society (SACS) said- “A uniform state and central monitoring system helps to address these changes in policies.” The participants also expressed their concerns on stoppage of the existing services, requirement of double pension and importance of continuation of the existing services. (Table 3)

Child education

Majority of the participants (n=81, 86%) had at least one living child. They expressed the need for assistance in their child’s education in terms of reservation or HIV quota in seat allotments or fee waivers.

A health care worker says “Eligible students are given Amma vodi, Vasathi deevena and Vidya deevena as a monitory aid for education. No additional assistance in education is available for HIV infected or affected children. A 35-years-old woman participant expressed her concern “I have two sons who are studying in 8^th and 10^th classes. We are very much afraid thinking about the financial burden of their higher studies. They are very much interested to study. I feel that there should be special scheme for children with HIV for their higher education in the form of reservation or HIV quota or fee waivers, which will reduce the burden on our family.” One participant even expressed that pension is crucial for children’s need. (Table 3)

Employment

A few (n=8, 8.5%) have expressed a need for employment, for which participants commonly asked for- bank loans to start small-scale business, or skill development training. (Table 3)

A participant who tried getting bank loan to start a tiffin center expressed that- ”I did not receive a bank loan despite applying for many times. Finally, I took money from a pawn broker shop and started a tiffin center. It will be helpful if people suffering from HIV are given priority in availing loans”.

Housing

Housing is another domain of need expressed (n=6, 6.3%) asking for ‘land patta’ and housing loan to construct a house and few participants especially orphan children affected or infected with HIV and elderly asked care shelter/care homes.A 20-years-old participant said- “My parents passed away due to HIV when I was 10 years. Since then I am residing with my aunty (Mother’s sister) at her place. It is a huge burden for them to bear my expense. I understand that they are uncomfortable with me as I am HIV positive as well. I have no other option to stay. If available, care homes can really help people like me.” Another participant expressed that the amount given for making house is inadequate,

Nutrition

A very few (n=3, 3.5%) people expressed their concern on nutrition. Additional nutrition either through extra ration (Anthyodaya Anna Yojana (AAY)) or nutritious diet supplementationare the expressed needs in this domain. A VSS says “Anthyodaya Anna Yojana (AAY) scheme is availed by only old beneficiaries and no new registrations are getting this facility”. A HCW said “No additional nutritional support is given for people with HIV. This is a very important point as the HIV medications weaken them. So, it is further emphasized that some nutritional support is considered for this group”. The major concerns of the participants include- inadequate quantity, and poor-quality ration. (Table 3) A 40-year old female participant expressed her concern on inadequate nutritional support- “My husband passed away due to HIV in 2016. Then I got to know about my disease. Since then, I am the only earning person in the family. There are 3 people including my children who are dependent on me. ART medications make me feel very weak. In certain days, on waking up from bed, I feel very tiresome and fail to resume even my routine works which is affecting my income as I am a daily wager (expressed with tears in her eyes). I can’t afford buying vegetables also sometime because my income is very low. It would be very helpful if I get some nutritional support in the form of nutritious powders, from government by which I regain some strength and can go for my work regularly.”

Health

All PLWH receive free consultation, medication, and investigations. But a few participants (n=2, 2.5%) expressed that sometimes at government facilities, they are sending them to private labs for getting their investigations done, especially monthly haemoglobin.

Travel

Two (n=2, 2.5%) elderly participants expressed their concern on non-existence of travel benefit for this vulnerable group. One of the participants receiving medications from Tirupati ART center expressed that, “My son, my daughter and I are on ART medications. We visit the treatment centre three times in a month., A visit costs 500 rupees which is a big burden to us. It will be of great help if we receive free travel benefit”. Health care worker at ART centre said–“There are families having more than one HIV patients.” The ART staff explained that- “There are individual management plans for each family member with HIV. They must visit the ART centre on their scheduled days to get tested and receive the appropriate medicines. Hence, assigning a same-day visit for all the family members is sometimes inappropriate.

Support to avail Government social protection schemes (GSPS)

Majority participants(n=80, 85%) expressed that they are failing to avail the existing GSPS due to insufficient information about the schemes (n=76, 80.8%), and administrative delay in processing the applications (n=71, 75.5%). A few participants (n=55, 58.5%) also expressed that they feel shy or guilty to avail the benefit and sometimes they were asked to give bribe (n=15, 16%) to avail GSPS which is preventing them in following up their applications. (Table 2, 3)

A 50-year male participant said, “I don’t know about the availability of a pension. I am visiting treatment centre for the past seven years but no one informed me about it”. Another person said “though I know about the provision of travel card, I don’t know where to go and how to apply. There should be a designated person for giving such information at each ART centre”.

Need for de-stigmatization

A few participants expressed their concern about prominent existence of discrimination among the common people towards the PLWH. Even some health care workers indirectly spread discrimination by breaching the confidentiality of HIV status as expressed a few (n=17, 18%) of them. A participant at Chittoor ART said “Kuppam government hospital is the nearest center for me to get my medication, but I don’t want to transfer my registration from Chittoor (120 kms away from Kuppam) as many people at the Kuppam hospital may identify my HIV status”. Another female participant aged 45 years stated that- “I don’t want to reveal the HIV status by applying for housing loan or ART pension. The village secretariat will call or announce my name in the public to get it enquire as a part of procedure by which my HIV status is revealed. Once HIV status is revealed we cannot stay in the same community, because they may isolate us”. The participants were even concern in availing any scheme that might reveal the HIV status. (Table 3)

At least eight participants (8.6%) experienced discrimination in the form of refusal of treatment. A female participant aged 55 years old stated that - “When I wanted my cataract to be operated, one of the speciality hospitals in Tirupati (A district in Andhra Pradesh) refused to operate because of my HIV status, for which I had to travel around 270 kms to Anantapur (Adjacent district) to undergo surgery in a trust hospital”. They also felt that gender discrimination exists in providing GSPS (n=8, 8.6%). (Table 2)

A health care worker highlighted that “Gender plays a critical role in choosing the place of treatment between government and private. We see men are often registered with the private facilities for getting the treatment than women. We have also seen situation where both husband and wife are HIV positive. While the wife is sent to government ART center for treatment, the husband got registered in private centers”, One participant even expressed that family support, as well as people awareness is critical in HIV social support. (Table 3)

Six (6.4%) participants wished to avail the benefits of the schemes only if confidentiality of HIV status is ensured.

Unmet needs of the PLWH are specific to age and gender.

Gender specific unmet needs: Both the genders mainly expressed the need for financial aid (females(n=40) 61.5%) males(n=28) 29.8%) followed by need for housing (n=6, 9.2%) among females; employment (n=5, 17.8%) and child’s education (n=5, 17.8%) among males. The only transgender participant expressed the need for employment. (Table 3)

Age specific unmet needs:

Participants expressed their need for financial aid in terms of pension aid or subsidized bank loans. Elder populations (41 to 60 years (n=29, 72.5%) and > 60 years (n= 3, 75%)) had a higher need than the younger populations (18 to 40 years (n=25, 50%). Participants belonged to 18 to 40 years expressed need for employment (n=5, 10%), housing aid (n=5, 10%) and child’s education (n=4, 8%). A few participants (Between 41 and 60 years) (n=4, 10%) of group have expressed their concern on child’s education. However, the elderly participants expressed their concern only for financial aid. (Table 3)

The other domains of concerns/needs expressed are insufficient provision through available GSPS, failure to avail GSPS, lack of support from family, neighbors and health care workers in availing GSPS and stigmatization towards PLWH. (Table 2)

The present study highlights the various unmet needs of PLWH from a Southern Indian context where burden of HIV is high. We observed that HIV populations in this setting are heavily dependent on the government assistance for their daily living that encompasses various needs but not limited to finance, nutrition, housing, education, health, and travel. These needs are mostly unmet, and hence, the PLWH face various challenges as expressed by them. Besides, there are social and administrative challenges for them to avail the government-supported schemes. The unmet needs depend upon the age, and gender and due to the unmet needs, the PLWH face varying degree of difficulties in their day-to-day life.

Social protection plays a pivotal role in surmounting various hurdles for people living with HIV (PLWH). (13)] Free and decentralized HIV services alleviate significant barriers to access, additional economic obstacles such as heightened expenses for nourishing sustenance, transportation costs, and income loss due to antiretroviral therapy (ART) appointments. (13–15)] As per the UNAIDS national composite policy index of 2017, a total of 109 countries affirmed the presence of an endorsed social protection strategy, policy, or framework; among these, 99 were actively implementing diverse social protection initiatives, and the strategies of 85 countries exhibited a certain degree of HIV sensitivity. (16)] In India, in accordance with the provisions outlined in Chapter VII of the HIV and AIDS (Prevention and Control) Act of 2017, both the central and state governments bear the responsibility of implementing measures to facilitate the accessibility of welfare schemes aimed at catering to the needs of PLWH. The Act mandates the central government to ensure the dissemination of comprehensive information about the disease and program-related communications to safeguard the rights of PLWH. Encouragingly, both the state and central governments have taken proactive steps to assist PLWH through the creation of various social benefit schemes. These encompass a wide array of services, encompassing financial assistance, employment opportunities, nutritional support, travel concessions, insurance provisions, as well as initiatives targeted at children, among others. (12)] However, the schemes vary widely in number and types of schemes across the states and commonly criticized because of their top-down nature. (12)] Finding of the present study also indicates that the social support for the PLWH from the government in this setting is mostly a top-down approach and hardly need-based.

In resource-poor settings a dynamic relationship exists between HIV/AIDS and the economic hardship where both act as an instigator and a consequence of each other. (17)] In this study, we observed that economic crisis is the most common form of need expressed by the participants. In fact, for most of the other unmet needs including housing, education, nutrition, and transposrt, the underlying principle is economic hardship. (18)] In Indian setting, high socio-economic status has a significant association with better quality of life among the PLWH. (10, 19)] Besides, HIV treatment outcome strongly relies upon reducing poverty. (18)] Socioeconomic factors like- homelessness or housing instability hunger and food insecurity and insufficient transportation are often associated with HIV or pose major obstacles in achieving HIV treatment goals. (20–26)] As the population in our study is relatively young, we expect that the need of the population will increase with the increasing age, unless appropriate interventions are taken. Unfortunately, as reported by the health care workers, the provision for multiple schemes including double pension has been stopped.

These steps may further be aggravated by the administrative challenges and social stigma. In an earlier study from Rajasthan, India, it was found that administrative bottlenecks are one of the major reasons for the unmet need. (15)] Inadequate information, and delay in processing applications often makes the PLWH reluctant in availing the services as we have found in the present study. The administrative challenges, coupled with stigma makes the ground more complicated in availing the schemes and thereby increases the unmet need. (11)] It is worrisome that a considerable proportion of participants felt that their HIV status is revealed by the healthcare workers and the administrative staff in various offices. Perceived breach of confidentiality is known to cause reduction in utilization of services, conversely increases the unmet need. (27, 28)] On top of everything, family and social support empower PLWH towards care and treatment outcomes. Unfortunately, these supports were grossly compromised for the study participants. (8)]

The study had a few limitations. First, the participants were selected non-randomly and hence, the selection methods are expected to reduce the generalizability of the study finding. To overcome this problem, we selected participants from all the three centres of the district. Also, we interviewed the health personnel to triangulate the responses of the PLWH. To avoid interviewers’ bias, a structured questionnaire and an interviewers’ guide were given to the interviewers to avoid leading questions. Additional training was imparted to the interviewers.

The people living with HIV in this setting have varying degrees of socio-economic need for themselves and their families. Most of these needs are unmet due to bottlenecks at different levels including administrative challenges, social challenges, and perceived stigma. Efforts to increase awareness, reduce stigma and discrimination, and providing culturally appropriate social support programs and healthcare services are crucial in improving the health and well-being of these vulnerable populations.

Funding: nil

Conflicts of interest/Competing interests: The authors have no relevant financial or non-financial interests to disclose.

Ethics approval: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Ethics Committee of Apollo Institute of Medical Sciences and Research (AIMSR), Chittoor and the reference number is IEC07/AIMSR/07/2020 dated 30/05/2020.

Consent to participate: Informed consent was obtained from all individual participants included in the study.

Consent for publication: The authors affirm that the participants signed informed consent regarding publishing their data

Availability of data and material (data transparency): The anonymous data can be made available on reasonable requests.

Code availability (software application or custom code): Not available

Author Contribution

JT, KK, and SC: Concept development JT, KK, SC and KH: MethodsKK, UK and KH: Data acquisitionSC, KK: Data analysisSC and UK: Writing first draftJT, KK, SC, UK, KH: Reviewed manuscript

Data Availability

The anonymous data will be made available on reasonable reqest.

Katz IT, Maughan-Brown B. Improved life expectancy of people living with HIV: who is left behind? The Lancet HIV. 2017 Aug 1;4(8):e324–6.
Fang L, Chuang DM, Al-Raes M. Social support, mental health needs, and HIV risk behaviors: a gender-specific, correlation study. BMC Public Health. 2019 May 28;19(1):651.
Maulsby CH, Ratnayake A, Hesson D, Mugavero MJ, Latkin CA. A Scoping Review of Employment and HIV. AIDS Behav. 2020 Oct;24(10):2942–55.
Arum C, Fraser H, Artenie AA, Bivegete S, Trickey A, Alary M, et al. Homelessness, unstable housing, and risk of HIV and hepatitis C virus acquisition among people who inject drugs: a systematic review and meta-analysis. The Lancet Public Health. 2021 May 1;6(5):e309–23.
P. Zinyemba T, Pavlova M, Groot W. Effects of Hiv/Aids on Children’s Educational Attainment: A Systematic Literature Review. Journal of Economic Surveys. 2020;34(1):35–84.
Steward WT, Bharat S, Ramakrishna J, Heylen E, Ekstrand ML. Stigma is Associated with Delays in Seeking Care Among HIV-Infected People in India. J Int Assoc Provid AIDS Care. 2013 Mar;12(2):103–9.
Mukoswa GM, Charalambous S, Nelson G. The association between social capital and HIV treatment outcomes in South Africa. PLOS ONE. 2017 Nov 9;12(11):e0184140.
Birore CMS, Wu L, Abrefa-Gyan T, Lewis MW. Social Support and Quality of Life Among People Living With HIV/AIDS (PLWHA) in Ghana. Journal of Family Issues. 2022 Aug 1;43(8):2159–80.
Damulira C, Mukasa MN, Byansi W, Nabunya P, Kivumbi A, Namatovu P, et al. Examining the relationship of social support and family cohesion on ART adherence among HIV-positive adolescents in southern Uganda: baseline findings. Vulnerable Children and Youth Studies. 2019 Apr 3;14(2):181–90.
Nyamathi AM, Sinha S, Ganguly KK, William RR, Heravian A, Ramakrishnan P, et al. Challenges Experienced by Rural Women in India Living with AIDS and Implications for the Delivery of HIV/AIDS Care. Health Care Women Int. 2011 Apr;32(4):300–13.
Lalhruaimawii I, Danturulu MV, Rai S, Chandrashekar UK, Radhakrishnan R. Determinants of stigma faced by people living with Human Immunodeficiency Virus: A narrative review from past and present scenario in India. Clinical Epidemiology and Global Health. 2022 Sep 1;17:101117.
Koni K, Chaudhuri S, Tarugu J, Udayasree K, Hema K. HIV care policy in India: A review of social security schemes. Journal of Family Medicine and Primary Care. 2022 May;11(5):1648.
Temin M. HIV - Sensitive Social Protection What does the evidence say? 2010;
Kyaw NTT, Kumar AMV, Oo MM, Oo HN, Kyaw KWY, Thiha S, et al. Long-term outcomes of second-line antiretroviral treatment in an adult and adolescent cohort in Myanmar. Glob Health Action. 2017;10(1):1290916.
Gowthamghosh B, Huidrom R, Arumugam V, Pathak N, Purohit N, Shewade HD, et al. Implementation of social protection schemes for people living with HIV in three districts of Rajasthan state, India – a mixed methods study [Internet]. F1000Research; 2020 [cited 2023 Aug 16]. Available from: https://f1000research.com/articles/9-248
UNAIDS. What needs to be done to Fast-Track social protection to end AIDS? [Internet]. [cited 2023 Aug 16]. Available from: https://www.unaids.org/en/resources/presscentre/featurestories/2018/may/fast-track-social-protection-to-end-aids
International Labour Organization. HIV/AIDS and poverty - the critical connection.
Kalichman SC. Ending HIV Hinges on Reducing Poverty. AIDS Behav. 2023 Jan 1;27(1):1–3.
Arjun BY, Unnikrishnan B, Ramapuram JT, Thapar R, Mithra P, Kumar N, et al. Factors Influencing Quality of Life among People Living with HIV in Coastal South India. J Int Assoc Provid AIDS Care. 2017 May 1;16(3):247–53.
Chen NE, Meyer JP, Avery AK, Draine J, Flanigan TP, Lincoln T, et al. Adherence to HIV treatment and care among previously homeless jail detainees. AIDS Behav. 2013 Oct;17(8):2654–66.
Leaver CA, Bargh G, Dunn JR, Hwang SW. The Effects of Housing Status on Health-Related Outcomes in People living with HIV: A Systematic Review of the Literature. AIDS Behav. 2007 Nov 1;11(2):85–100.
Milloy MJ, Kerr T, Bangsberg DR, Buxton J, Parashar S, Guillemi S, et al. Homelessness as a Structural Barrier to Effective Antiretroviral Therapy Among HIV-Seropositive Illicit Drug Users in a Canadian Setting. AIDS Patient Care and STDs. 2012 Jan;26(1):60–7.
Anema A, Vogenthaler N, Frongillo EA, Kadiyala S, Weiser SD. Food insecurity and HIV/AIDS: Current knowledge, gaps, and research priorities. Curr HIV/AIDS Rep. 2009 Nov 1;6(4):224–31.
Franke MF, Murray MB, Muñoz M, Hernández-Díaz S, Sebastián JL, Atwood S, et al. Food Insufficiency is a Risk Factor for Suboptimal Antiretroviral Therapy Adherence among HIV-Infected Adults in Urban Peru. AIDS Behav. 2011 Oct 1;15(7):1483–9.
McLinden T, Stover S, Hogg RS. HIV and Food Insecurity: A Syndemic Amid the COVID-19 Pandemic. AIDS Behav. 2020;24(10):2766–9.
Lankowski AJ, Siedner MJ, Bangsberg DR, Tsai AC. Impact of Geographic and Transportation-Related Barriers on HIV Outcomes in Sub-Saharan Africa: A Systematic Review. AIDS Behav. 2014 Jul;18(7):1199–223.
Bayisa L, Wakuma B, Abera T, Mulisa D, Mosisa G, Tolossa T, et al. Are the Things Told to Care Providers Kept Confidential?: Perceived Breaches of Confidentiality and Associated Factors Among HIV/AIDS Clients on ART at Nekemte Specialized Hospital, Western Ethiopia, 2021. HIV AIDS (Auckl). 2022 Jan 15;14:1–12.
Dapaah JM, Senah KA. HIV/AIDS clients, privacy and confidentiality; the case of two health centres in the Ashanti Region of Ghana. BMC Medical Ethics. 2016 Jul 16;17(1):41.

Table:1 Domains of unmet needs expressed by PLWH at Chittoor district, A.P, India, 2021.

Domains of unmet needs	Eligible participants, n (%)	Never utilized, n (%)	Unmet need expressed, n (%)	Explored ways to meet unmet needs
Finance	94 (100)	57 (60.6)	57 (60.6)	Pension benefit or subsidized bank loans. A uniform state and central monitoring system
Child's education	49 (52)	24 (25.5)	8 (16.3)	Reservation or HIV quota in seat allotments Fee waivers.
Employment	94 (100)	81 (86)	8 (8.5)	Bank loan to start a small-scale business, Priority to PLWH in provision of GSPS/skill training
Housing	78* (82.9)	44 (46.8)	6 (7.7)	Land ‘patta’ and housing loan 8. Shelter/care homes
Additional Nutrition (AAY)	94 (100)	82 (87.2)	3 (3.2)	Extra ration-Anthyodaya Anna Yojana (AAY) Nutritious diet supplementation
Health	94 (100)	84 (89)	2 (2.1)	Updated IEC on schemes to be displayed at ART, Regular updation of concerned websites Help line number to address the doubts Equitable provision of GSPS throughout the nation Single point of contact (single window approach) at ART itself to apply and receive any social assistance.
Travel	94 (100)	0	2 (2.1)	Free travel charges
Assistance for marriage	4 (4.3)	0	1 (25.0)	Premarital counselling. Provision for marriages among positive networks.

*16 members had their own houses

Table:2 Administrative challenges and stigma faced by PLWH at Chittoor district, A.P, India, 2021. (n=94)

Social and administrative domains	Obstacles expressed	n(%)
Administrative challenges	Information related to the available schemes are inadequate	76(80.8)
	Provision given in the schemes are not adequate	66(70.2)
	Processing of application for GSPS is slow	71(75.5)
	I bribe to avail social protection schemes	15(16)
	I feel shy/guilty to avail the benefits of the scheme	55(58.5)
Stigma towards PLWH	I feel health care team doesn’t keep HIV status confidential	17 (18)
	Gender discrimination in provision of Exclusive GSPS	8 (8.5)
	Health care team discriminates PLWH	4 (4.2)
	Hospitals refused to provide treatment	8 (8.5)
Social challenge	Health care workers and family are not supporting me in availing GSPS	67(71.2)

Table:3 Age and gender specific unmet needs of PLWH at Chittoor district, A.P, India, 2021.

Variables n (%)

Domains of unmet need

Finance

n(%)

Child’s education

n=49

F=30; M=19

Employment

n=94

Housing aid

n=78

F=47

M=31

Nutrition

n=94

Health

Aid

n=94

Travel pass

n=94

Aid for marriage

n=4

Gender

Female 65(69)

Male 28 (29.8)

Transgender 1(1.1)

41(61.5)

16(53.5)

-

3(10)

5(26.3)

-

2(3)

5(17.8)

1(1.53)

6(12.8)

2(3)

1(1.53)

-

1(1.53)

-

1(1.53)

-

1(25)

-

Age in years

18-40 50 (53.2)

41-60 40(42.5)

> 60 4(4.25)

23(46)

29(72.5)

3(75)

4(8)

4(10)

-

5(10)

2(5)

1(25)

5(10)

1(2.5)

-

2(5)

1(25)

2(4)

-

2(50)

1(25)

-

Table 4: Thematic analysis of the unmet need of people living with HIV, Chittoor, India, 2021-22

Verbatim	Codes	Themes
Bus pass can significantly reduce the travel cost	Travel Concession	Requirement
It will be helpful if both ART and widow pensions are given together	Dual pension
The amount given for housing is inadequate, need additional amount	Additional requirement
It will be helpful if additional ration is given
Financial aid should be increased to 4000 Rupees per month
Instead of introducing new things, it is important to continue the existing services without stopping in between	Continuation of schemes
If I get a cattle, it will be helpful for me to generate some income	Rehabilitation
Some skill training can be extremely helpful for daily living
I need any kind of aid to earn my livelihood
Pension is crucial to support my children's need	Financial aid
With financial aid, I can start my own business
I am planning to start a plastic recycling business for which I need financial aid
I need financial aid to start a tiffin centre
Provision for education should be there for the children	Education
A permanent job may be helpful to improve our condition	Permanent employment
I am a railway employee and I do not require any scheme	Not required
I am satisfied with what I got	Satisfied
Awareness about the schemes should be given to public as well	Public awareness	Awareness
HIV-infected people should be aware of the existence of the schemes available	Awareness of PLWH
More information is required from the government about the schemes	More information
I am not aware if such schemes are available for the HIV positive people	Poor awareness
If at all a house is given or constructed, the area should not be named as HIV colony	Stigma	Social challenge
If a house is constructed through such schemes, I fear of social discrimination
I don't want any social schemes because of stigma
All PLWH should get support of their family first, which is often lacking	Family support
Schemes are required, but without revealing my status	Confidentiality
Training can be given but without revealing the HIV status	Confidentiality
I have made multiple applications for ART pension, but yet to receive a response	Application process	Administrative challenge
Provision for home loan or land patta is needed to make a house for my children	Land patta
Government has withdrawn the travel pass since COVID-19	Stoppage of benefit
Rice that is distributed is not of good quality, it is causing stomach upset	Quality	Quality issue

No competing interests reported.

Unveiling the unseen: Exploring unmet needs among people living with HIV in Chittoor, Andhra Pradesh, India

Status:

Version 1

Abstract

Introduction

Methods

Results

Discussion

Conclusion

Declarations

Author Contribution

Data Availability

References

Tables

Additional Declarations

Status:

Version 1