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Role of Toll-Free HIV Help Lines

Toll-Free Help Lines in the context of HIV are vital. This is essentially because of the confidentiality that it offers. Round-the-clock, no-cost accessibility makes it exceptionally appealing. The veil of anonymity that Help Lines provide makes all users comfortable enough to listen and discuss sensitive issues, with which HIV is replete. Finally, the fact that users are able to decide when they want to use the service and to what extent, it makes client-convenient and user-friendly.

As Toll-Free Help Lines on HIV have been present in India for nearly a decade, we at UNAIDS, feel it is time we found out details of its use, as well as gather lessons learned, to enable us to respond better to the HIV epidemic in the country. Specifically, we would like members to share information and experiences on:

Profile of the callers and type of information they request,  Profile of staff at the call center and their availability at the center, hours of operation of the center, and coverage of Indian territory,  Reports including evaluation and other types of documentation on HIV Help Lines including complaints and testimonials.

The information will help us in setting up new Toll-Free HIV Help Lines for specialized groups or employees. We look forward to pooling the knowledge from amongst us so that jointly we can figure out new ways of utilizing the Help Lines, to augment the response to HIV.

Summary of Responses

Explosion of media and proliferation of the internet has led to conflicting messages creating confusion around sexuality. Toll-free help lines are a vital tool for providing information in a confidential environment. Respondents shared interesting and relevant experiences on help lines and suggested ways for utilizing them better.

Members mentioned several help lines in India, which are providing telephonic counseling services. JSK initiative gives an opportunity to the youth to speak their mind. UNAIDS supported the Central Reserve Police Force (CRPF) in India to set up a toll free helpline on HIV. The initiative has boosted the morale of the force, besides bringing focus on wellness promotion and decreasing vulnerability to HIV. Talking About Reproductive and Sexual Health Issues (TARSHI) helpline provides confidential, anonymous and non-judgmental information, counseling and referral service.

TARSHI website also provides a list of Help lines in Delhi. Chandigarh AIDS hotline, a computerized telephone counselling service is a joint venture of a NGO and the State AIDS Control Society.

Respondents reported on the profile of callers and evaluation of helpline services. The anonymity and confidentiality of the help lines has encouraged more calls. Most of the questions arise from a lack of basic information about one’s body, sex and sexuality, reproductive and sexual health. Hindustan Latex Family Planning Promotion Trust Toll Free Help line, deals with Reproductive and Sexual Health, and family planning issues of young married couples. Phones for Health uses the widespread and increasing mobile phone coverage in Africa to strengthen health systems.

The help lines cover, subscribers stated, mostly the residents of the city and its nearby surroundings. Most of the callers to the help lines are youth and men but the number of women callers has recently gone up. The duration of calls varies from as little as a minute to over an hour depending on the nature of the concern and the amount of time and privacy the caller has. Some help lines also provide a referral list of doctors, Psychologists, and NGOs. Most help lines operate on working days and have trained counseling staff. Whenever the regular staff is not available, other staffs help. Like in AIIMS, a doctor and two social workers take over the helpline in case of a contingency.

It is difficult for an anonymous Helpline based sexuality counseling service to track the outcomes of its service, participants acknowledged. Some callers do report follow-up actions in subsequent calls and few organizations record the feedback to maintain the quality of its service, deepen understanding of sexuality and reproductive health and collect data for future research. TARSHI has completed a few action researches. PSI help line generates daily data giving a profile of the callers. Zumbido has conducted a comprehensive follow-up survey enlisting the impact on the callers.

Contributors accepted that the toll free help lines are working well in some of the states, while they are defunct in most others. SACS generally outsource the help lines to NGOs. However, those managing help lines have to address several challenges. For instance, the software and methodology of dealing with the queries is outdated. Moreover, only a few have dedicated telephone lines for telephone counseling directly with a counselor. In addition, the toll free numbers of SACS help lines do not cover the entire state limiting the access of callers to these facilities.

Besides, few help lines keep the profile of callers and the details related to the query and the reply given to the client. Furthermore, no formal comprehensive sexuality training for counselors exists. Likewise, some NGOs conduct sexuality training pertaining to their own primary issue of concern. Additionally, help lines do not give information on "available services" to the community and only general information about HIV is available. What’s more, in Haryana the Counselors switched off their Mobiles and many of them used the mobiles for their own use. Respondents also informed that Rajasthan State AIDS Control Society discontinued their project due to non-availability of funds in for this project.

To address the problems associated with HIV help lines, members gave some suggestions:

To sum up, toll-free help lines are a vital tool for the dissemination of correct information on HIV. Sex education in schools in India has run into serious problems because significant groups feel that sex education goes against Indian values. It is necessary to fill this lacuna with toll-free help lines that provide up-to-date and essential facts, rather than getting incorrect information from peers, members concluded.

Comparative Experiences

India

Addressing health and welfare issues holistically, India (from Sarita Jadav, UNAIDS-India, New Delhi, Ranjan Dwivedi, UNAIDS, New Delhi and Gladson Paul, IPAS, New Delhi)

In 2007, UNAIDS supported the Central Reserve Police Force (CRPF) to launch a telephone helpline to serve over 750,000 combatants. It addresses health and welfare issues holistically by providing information on HIV, STI, substance abuse and welfare schemes for CRPF personnel and their families. As it offers information on welfare issues too, the personnel use the services regularly without any stigma attached to using the helpline. The helpline has an automated Interactive Voice Response System (IVRS) to provide information in Hindi and English. The help line receives about 250 calls every day and 20 percent of them are from women. On designated time slots, CRPF officers answer the queries in real time.

Delhi

Jansankhya Sthirata Kosh (JSK) collaborates with a BPO, Delhi and surrounding areas (from Anirudha Deshmukh, Mahindra Shubhlabh Services Ltd, Pune)

JSK has set up a system by which the call goes to the customer centre in the Delhi. Doctors have trained those working at the call centre to help deal professionally with queries on reproductive health in English and Hindi. It targets mainly adolescents, the newlywed, and about-to-be married people. The service is available from Monday through Saturday and gets around 30 to 40 calls every day on an average. The centre provides support to callers from Delhi and nearby areas would be spread to other parts of the country with time.

SAHAS Helpline (from Anjan Joshi, Society for People's Awareness, Care & Empowerment (SPACE), New Delhi)

Society for People's Awareness, Care & Empowerment (SPACE), had run a part time Help Line on HIV and sexuality in 2002, to cater to the needs of college youth in Delhi University. It had a name that meant Courage. It was a volunteer-based one, where a young group of trained counsellors took calls from 3:00 to 7:00 PM every evening when youth were free. The help-line ran for about a year and received about 10-15 calls per day. Male callers out numbered the female callers. Most calls were on issues related to relationships, break-up, contraception, and condom usage than directly related to HIV.

Talking About Reproductive and Sexual Health Issues (TARSHI), New Delhi (from Pauline Gomes, Talking About Reproductive and Sexual Health Issues (TARSHI), New Delhi)

The TARSHI Helpline was set up in 1996 to provide information, counselling, and referrals on sexuality, sexual and reproductive health. Trained counsellors run the Helpline three days a week, Monday to Wednesday, from 10 am to 4 pm in Hindi and English. The helpline is not toll-free, and the callers have to pay for phone charges. TARSHI documents each call to the Helpline in order to maintain a high quality of Helpline service.

HIV telephone helpline, Delhi (from Dr. Bir Singh, All India Institute of Medical Sciences, New Delhi)

All India Institute of Medical Sciences (AIIMS) launched the HIV and AIDS Telephone Helpline "Shubhchintak" [011-26588333] in 1998. This help line attracts 5 to 15 queries per day. A Nurse who is proficient in counselling for HIV staffs it. The helpline operates from 10 AM to 5 PM on Mondays to Fridays and from 10 AM TO 1.00 PM on Saturdays. Whenever the regular staff is not available, a doctor takes the calls assisted by two social workers having experience in counselling.

Chandigarh

Tele-counselling by Development of Social Transformation (DOST) help line, Chandigarh

Chandigarh Administration gave the IVRS Project with the Chandigarh AIDS Help Line -1097 to DOST help line in 1996. From January 1999 to March 2007, the helpline received more than Nine hundred thousand calls. While the answering machine answered the first eight questions, subsequent queries went to the counselor. The topics were sexuality, HIV, Treatment, Care, Positive Living, Prevention, Testing, Counselling, and Confidentiality. The coverage was mostly to the residents of the city and nearby areas from 8 am to 6 pm on working days. Those who used the services were both male and female from the community, most of them in the age groups from ten to thirty-five years.

Uttar Pradesh

Hindustan Latex Family Planning Promotion Trust, Lucknow

Hindustan Latex Family Planning Promotion Trust launched a toll free helpline in 2007, which is open from 12.00 Noon to 12.00 midnight. There are separate lines for male and female callers and the help line has received 12500 calls. One management person supports two male and two female counsellors working in shift of six hrs each. Callers generally belong to age group 20-30 and ask generic and personal questions on HIV.

Health & Social Development Research Centre (HSDRC), Jaipur

Initiated in 2000, the government-sponsored programme hotline project functions 24 hours a day, 7 days a week with the computer software, assisted by a voice interactive system. Options for helpline callers include information on symptoms, diagnosis, and support for people living with HIV, as well as an option for recording personal queries. The help line keeps the identity of its callers anonymous. Moreover, the phone call is free. It is accessible to those in Jaipur city. During December 2000 to September 2007, the helpline has attended to more than two hundred, forty thousand calls.

Kerala

Seven-day Helpline (from Dr. Nabeel M. K, Kannur Medical College, Kannur)

In Kerala, there is a call centre operating from Kochi staffed with five trained counselors. This centre run by the Kerala SACS operates seven days a week and serves all districts in Kerala in the local language Malayalam. Currently it does not have a toll free number and operates with a chargeable number 0484 4099899.

Maharashtra

Mukta Help line (from Hans Billimoria, Deep Griha Society, Pune)

Since it's inception in 2005, Muktaa has received 15000 calls, as of 30 September 2007. Calls are in a range of a wide variety of issues, covering medical, social, economic, and human rights. Calls come from a cross-section of the audience. The helpline has received many calls thanking them for the service from those satisfied and happy with the service.

Saadhan Help line, Mumbai( from Mayank Agrawal, National AIDS Control Organization (NACO), New Delhi, Gopa Khan, Population Services International, Mumbai)

Since 1991, PSI has been operating a Help line in Mumbai with the objective of providing information and counseling on HIV. USAID funding, helped to upgrade and brand the help line as "Saadhan Help line". The helpline has attended to over 150,000 calls from across the country and some from outside India. PSI now successfully runs state-of-the art "Saadhan" helpline services in Mumbai, Vizag and Chennai. The helpline operates five days a week from 10:00 a.m. to 7:00 p.m. It has six counselors and a site manager, four computer workstations and a telephone call centre system. This telephone system answers each call before the second ring, and no caller is kept on hold.