A study to assess the needs of people living with HIV/AIDS reporting to an ART Center of Central India

Effectively addressing the needs of people living with HIV/AIDS (PLHA) and providing them with adequate care and support services are an essential intervention necessary to address the problem of HIV. The current study analyzed the needs of PLHA, the support received and the support required, to help frame comprehensive and focused programs for HIV infected individuals. The study was cross-sectional in design, incorporating quantitative analysis techniques and was conducted at the Anti Retroviral Therapy (ART) Center of MGM Medical College Indore, India, from February 2009 to January 2010. A semistructured interview schedule was used to interview 420 respondents currently on ART and the data was analyzed using SPSS software. Males and females constituted 69 and 31% of the study participants, respectively. The major support received by the respondents was care and help from families and friends, free ART, medicines for opportunistic infections (OI) and monthly health check-up at the ART Center. Other support received included nutritional supplements, traveling allowance to travel to the ART Center for availing the monthly dose of ART and educational help for children. The major support required was regular availability of medicines for various OI and associated diseases at ART centers, free laboratory investigations at hospitals, educational help for children, employment opportunities, development of a vaccine, facility of households, availability of second line ART drugs at ART centers, decentralization of ART centers, strengthening of existing PLHA networks and support groups, and better and effective counseling services. Coordinated efforts by governmental, non-governmental sources and PLHA themselves will result in the development of a comprehensive package of care and support for PLHA, to cater to their needs and requirements.

Keywords: needs; PLHA; ART Center

The spectrum of optimum care and support incorporates addressing the needs of people living with HIV/AIDS (PLHA) to provide them an enabling and healthy environment to lead a normal life. Various International and National policy decisions (International Council of AIDS Service Organization [ICASO], [6]; National AIDS Control Program Phase III [NACP-III], [8]; UNAIDS, [10]) have tried to evolve a package of comprehensive service delivery for PLHA. The present study tries to analyze specific needs of PLHA reporting to the Anti Retroviral Therapy (ART) Center at MGM Medical College Indore which is the largest such facility in the state of Madhya Pradesh in India and caters to around 2000–2500 patients from around 25 districts of the state. The center provides a suitable platform for understanding the support received and desired by PLHA from different areas and socio-economic status in the state. The study can thus help in generating baseline data for program planners, to assist them in designing appropriate care and support programs for HIV-infected individuals.

The present study was cross-sectional in design incorporating quantitative analysis techniques and was conducted at the ART Center of MGM Medical College Indore from February 2009 to January 2010. Patients registered at the center who were on ART, were more than 15 years of age, and had a confirmed diagnosis of HIV infection for more than 1 year were included in the study.

The sample size of the study was calculated on the basis of a pilot study conducted by the Department of Community Medicine, MGM Medical College Indore, among 150 PLHA from three districts of Madhya Pradesh which focused on needs of PLHA, the disclosure rates among PLHA, and the stigma and discrimination faced by them (Dixit, Bhagawat, Raghunath, & Taneja, [3]; Dixit, Bhagwat, Raghunath, Taneja, & Gupta, [4]). Keeping acceptable error at 5% and power of the study at 80%, the maximum required sample size using the formula 4 pq/n2 was 400. Assuming a 10% nonresponse rate the final sample size was calculated to be 440.

People living with HIV/AIDS registered at the center at the time of initiation of the study and presently on ART were screened out from the database of the center. A total of 1019 PLHA including 710 males and 309 females were available to be included in the present study based on the defined inclusion criteria. Stratified random sampling based on age and sex was used to identify the number of study subjects to be interviewed in the present study from the defined strata subgroups. Further simple random sampling based on date of start of ART was used to select the study subjects from each defined stratum.

A semistructured interview schedule adapted from the interview schedule used during the pilot study was utilized in the current study. The schedule incorporated questions on the support received and desired; options were designed from the results of the pilot study. However, the respondents were not provided options and they were asked to identify their own needs. The interview schedule was pre-tested on a separate group of PLHA at the ART Center before being used in the current study.

A team of field investigators with experience in working in the field of HIV/AIDS were appointed to conduct the interviews with the study subjects. A 1-day training program was conducted in the Department of Community Medicine to orient the field investigators with the designed interview schedule. The selected PLHA were then interviewed in an anonymous manner using the predesigned and pretested interview schedule. The study was approved by the ethics committee of the institute, and written informed consent was obtained from the study subjects prior to their participation in the study.

Out of the 440 PLHA identified to be interviewed, 50 males and 26 females did not turn up at the center for two consecutive months and were replaced by other members from the same age group. Fifteen PLHA did not provide consent to participate in the study; five of the forms were rejected as they had incomplete information, hence the results discussed here state the findings based on the 420 PLHA interviewed.

The data was entered in Microsoft Excel Spreadsheet and analyzed using SPSS version 17. The results were expressed in terms of percentages and proportions, and appropriate statistical parameters such as chi-square test were used wherever necessary.

Males constituted 69% of the study subjects, 70% respondents were between 21 and 40 years, 70% were married and currently living together, 20% were illiterate, drivers and housewives constituted major occupational groups among males and females, respectively, and 84% respondents belonged to poor households (Agrawal, 2008) (Table 1).

Table 1. Socio-demographic profile of the study subjects (n=420).

Majority of respondents were receiving encouragement and psychological support from families and friends and around 70% had received financial support at least once from families and friends. Major supports available to the respondents from the government health system were the free ART, medications for opportunistic infections (OI), and the monthly health check-up at the ART Center. Supports received from Non-Governmental Organizations (NGOs) included nutritional supplements, traveling allowance for visiting the ART Center for availing their monthly dose, and educational help for children (Table 2).

Table 2. Types of support obtained by the study subjects from outside family (n=420).

Out of the 420 respondents 91% required various forms of support. The major support required was regular availability of medicines for various OI and associated diseases at ART centers (62%), educational help for children (45%), free laboratory investigations at hospitals (44%), employment opportunities (loans, help at household level; 44%), development of a vaccine (37%), free housing (24%), availability of second line ART drugs at the ART centers (22%), insurance schemes for children (22%), and provision of free/subsidized tickets for transport (21%). Additional support desired included: pension scheme for widows of HIV-positive patients, decentralization of ART centers, better information education and communication (IEC) campaigns, no discrimination at hospitals, strengthening of existing networks of NGOs/Integrated Counselling and Testing Centers (ICTCs), and district level networks (DLNs – network of PLHA in a district), better and effective counseling services, separate hospitals for treating HIV-positive patients, and prevention of inadervant disclosure at health care settings (Table 3).

Table 3. Types of support required (n=383).

Findings from the current study reflect that support currently being received by PLHA is limited to the physical, psychological, and financial assistance from family and friends and the free ART, medicines for OI, and the monthly health checkups at ART centers from the government. The study outlines the view that support to PLHA is restricted to the medical and physical care with the overall holistic approach being ignored. Needs cutting across medical, social, and economic aspects have been observed in the present study, and previous studies put forward the same findings (Cloete et al., [2]; Majumdar & Mazaleni, [7]).

The major needs as stated by the respondents in the study were regular availability of free medicines for OIs at the ART centers and free laboratory investigations at the hospitals. Regular supply of medicines for OIs needs to be ensured at the ART centers and steps undertaken to ensure optimal laboratory services to the PLHA. In the present scenario the investigations available free of cost to the patients on ART includes CD4 count every six months at the center and routine investigations at the government hospitals wherein these centers are located. Often during the course of their illness patients have to undergo specialized diagnostic procedures or tests which might be unavailable at government centers. Hence, linking up of ART centers with private laboratories equipped with advanced diagnostic modalities can be undertaken to provide free or subsidized investigations to PLHA (Dixit, Bhagawat, Raghunath, & Taneja [3]).

Family needs specially that of children dominate the requirements of PLHA. Strengthening PLHA networks and providing educational and vocational support to the children and family members are essential. PLHA networks can serve to empower women affected/infected with HIV/AIDS by generating employment opportunities.

With improved treatment modalities and enhanced survival rates, HIV is now a chronic illness. Vocational rehabilitation services are important, and provision of loans, employment opportunities at household levels, and generating a self-financing scheme by pooling of money through a network of PLHA are viable options to ensure adequate and proper employment opportunities.

A major need reflected by the study was the development of an HIV vaccine. Concerted efforts are required in this direction to bolster the efforts for the development of an effective vaccine. Often PLHA have to travel long distances for ART and other medications as ART centers in India are located in select cities. Government of India (GoI) has issued railway passes to PLHA and the same can be replicated for road transport also as initiated by the state of Tamil Nadu (Free bus passes for HIV-positive persons, [5]). Decentralization of ART centers with availability of second line ART at more ART centers is also needed.

Of the respondents, 26% were receiving nutritional supplements from NGOs and other support groups. PLHA have specific nutritional needs which are intricately associated with the immune status of the patients. Around 83% of the subjects belonged to low-income households; providing them with proper nutritional supplementation from government, Community Based Organizations (CBOs), and NGOs is needed. Appointing a dietician at ART centers, CBOs, and other support groups will go a long way in addressing this aspect of care to PLHA.

People living with HIV/AIDS in India have now organized themselves into networks/formal and informal organizations/groups at the national, state, district, and subdistrict levels. Some organized groups of PLHA along with NGOs/CBOs and development organizations are now engaged in treatment education, positive living counseling, psychosocial support, and positive prevention programs. The NACP-III aims at facilitating establishment of PLHA networks in most districts and all states and strengthening capacities of PLHA/organized groups for positive prevention and care, support, and treatment activities (NACP-III, [8]). The present study also put forward similar findings; strengthening of existing networks of NGOs and PLHA networks was a major felt need. Improved counseling services at ART centers were also desired. PLHA can be trained as counsellors to provide better counseling services as peer group counseling is advocated to be the most responsive and effective. Community Care Centers (CCCs) and PLHA networks should serve as training points to inculcate interpersonal communication (IPC) and behaviour change communication (BCC) skills to PLHA. This will definitely improve counseling services and also aid in future IEC campaigns. With increased access to Internet, online support groups have come up which can be harnessed for empowering processes and outcomes for individuals living with HIV/AIDS (Phoenix & Coulson, [9]).

Adequate and optimal involvement of the community as a whole is required to rationalize and improve the care and support services to PLHA. Mainstreaming PLHA and involving them at the policy and decision-making levels is imperative, so is the creation of a community/home-based model of care and support by improved operationalization and expansion of the support groups and PLHA networks. Overall coordinated assistance from Governmental, Non-Governmental sources, and by PLHA themselves will result in the development of a comprehensive package of care and support for PLHA effectively addressing their needs and requirements.

The authors would like to acknowledge National AIDS Control Organization (NACO), Government of India, for providing them with an opportunity to conduct the study.