India-US collaboration to prevent adolescent HIV infection

Despite widespread support for the influence of parents on adolescent sexual behaviour, parent-based approaches to preventing adolescent HIV infection in India are rare. Indian culture is often characterized as having strong norms against open discussions of sexual behaviour [24], and Indian families are said to engage in indirect communication about sex [25]. At the same time, many Indian parents are concerned about their children becoming infected with HIV [26,27] and want to help their children make appropriate decisions regarding marriage [27,28].

Research also indicates that Indian adolescents are influenced by their parents. For example, a study in Uttaranchal observed that many young men attributed premarital sex to low levels of parental control and supervision [26]. In addition, a recent study with youth in Pune found that young people were more likely to talk with their parents about romantic relationships than they were with their peers [28]. Moreover, females who reported high levels of parental closeness were less likely to form romantic relationships [28].

Our study is distinct from previous research in several ways. First, it focused on families and parent-adolescent communication about HIV/AIDS as a means of preventing sexual risk behaviour and reducing adolescent vulnerability to HIV. Although the family has been the focus of interventions to help Indian persons living with HIV/AIDS, less research has focused on the family as a way to reduce adolescent vulnerability to HIV/AIDS. Open discussions about sexual behaviour are perceived as taboo in Indian culture [8,24,29]. As a result, relatively little is known about family communication about HIV/AIDS and how best to design a family-based intervention to prevent adolescent HIV infection.

We conducted exploratory research with families to generate insight into an understudied topic in the HIV/AIDS prevention literature. Previous research has tended to interview individual family members, i.e., adolescents [8,10]. In contrast, we conducted focus groups with mothers, fathers, and adolescent males and females in order to obtain a more comprehensive understanding of family perspectives on preventing adolescent HIV infection. In addition, interviewing multiple family members provided insight into possible biases in perceptions versus actual behaviour with respect to parent-adolescent communication about HIV/AIDS.

Finally, a strength of the study is the collaboration and integration of Indian and US perspectives into the development of study protocols and a family-based intervention to prevent adolescent HIV infection.


Focus group methodology was selected for several reasons. First, focus groups are ideal for understanding the norms and values of culturally diverse populations [30,31]. In India, focus groups have been used to explore a range of HIV-related issues, including factors that may impact on participation in future HIV vaccine trials [32], on acceptability of a vaginal gel among HIV-negative women [33], and on domestic violence on women’s HIV risk [34]. In addition, given the dearth of research on family-based interventions to prevent adolescent HIV infection, focus groups were identified as an ideal methodology to explore the topic with families.

Community background
The study was conducted in Aghai, a village in the Thane district of Maharashtra. Thane, which is north-east of Mumbai and adjacent to Pune, has a population of 8.1 million, of which 30% is rural. In 1986, the School of Social Work at the Tata Institute of Social Sciences established an Integrated Rural Health and Development Project (IRHDP) in Aghai and its 20 surrounding padas, or hamlets. The objectives of the IRHDP are to promote health and education and to effectively utilize and generate local resources for villagers in collaboration with the local primary health centre.

The IRHDP has developed strong community relationships with the local padas. As part of its work, the IRHDP also creates a map of each village and keeps records on the nature of health work conducted in each village. Using the IRHDP village social map and the most recent community census, we selected a pada with which local health workers had a strong existing relationship, but no special history of HIV/AIDS-related work. In total, there were 41 households in the selected pada. Of the 41 households, 25 included at least one unmarried adolescent aged 14 to18 years.

Recruitment and consent
After the sampling frame was finalized, recruitment was conducted via face-to-face outreach by trained, indigenous recruiters who visited homes with eligible adolescents and invited them and their eligible family members to participate. One target adolescent and one target parent from each family were asked to participate. In cases of two or more eligible adolescents, recruiters invited the youngest to participate.

The target parent and adolescent were asked to join a focus group study that sought to understand family members’ perspectives about participating in a family-based programme to help adolescents avoid HIV. As part of the consenting process, families were given basic information related to HIV. Recruiters explained the purpose of the study, the nature of the focus group process, and the right to refuse with no penalty.

A total of 48 individuals were approached to participate in the study and 46 (96%) consented to participate in the study and completed the focus groups. Adolescents received 100 Indian rupees for participating and each parent received 250 Indian rupees (about US$2 and $5, respectively). Institutional Review Board Approval was obtained from both the Tata Institute of Social Sciences (IEC/IRB No: 03/2009) and Columbia University (IRB-AAAC8244); all research protocols complied with the Helsinki Declaration.

Data collection
Separate groups with mothers, fathers, adolescent females and adolescent males were conducted for several reasons. First, Vissandje’e, Abdool, and Dupe’re’ [35] suggest that smaller groups of six to eight participants are ideal for exploring sensitive topics. In addition, triangulating the perspectives of different groups can enhance topic understanding, while homogeneity of group members’ experiences can reduce power differentials and promote participant comfort [36,37]. Finally, gender and age are especially salient factors in some non-Western cultures, where younger persons are discouraged from differing with older or more influential persons, or where females may tend to defer to males [38]. Given these factors, the number of participants per group was kept to six or less.

The standard protocol is to conduct at least three focus groups with each type of participant [36,39]. However, the relatively small size of the population in the village and the high degree of homogeneity of families within and across padas meant that two groups each with adolescent boys, adolescent girls, mothers and fathers were sufficient to cover the research questions. On average, each group lasted for 1.5 hours.

Focus group venues need to be acceptable, private, convenient, and easily accessible for all participants [35,40]. As the pada lacked a common space, the girls and the mothers groups met in the house of the pada worker, and the boys and fathers groups met in the house of the anganwadi (primary school) teacher. The venues were carefully selected spaces that were well known and respected by community members as this was deemed important to engendering participant trust and comfort in the focus group process by the indigenous research staff. Utmost care was taken to ensure privacy during the focus groups. The presence of onlookers and other distractions were minimized by holding the meetings indoors [41,42], and only the focus group facilitators and consented participants were present at each focus group.

Successful focus group implementation depends heavily on the ability of facilitators to moderate the focus group. In this study, the focus group facilitators consisted of the first and fourth authors, and a team of indigenous data collectors. Although all facilitators were familiar with the cultural and demographic profile of the target population, none resided in the target community. The facilitators led each focus group using a protocol developed by the first three authors, and refined with indigenous project staff and community members.

Facilitators then used a “funnel” approach to frame the development of the questioning route [39,43], which allowed for a wider perspective of individual experiences in the initial stages, followed by specific questioning in subsequent stages to directly answer the research questions. This question route enhanced the consistency of data obtained between groups and assisted in efficient, high-quality data analysis [44].

The questions elicited perspectives about the development and implementation of a family-based community intervention for HIV/AIDS in three core domains: (1) perceptions about and preferred format for planned intervention; (2) preferred methods for implementation; and (3) factors that could potentially foster or inhibit full engagement and participation in the intervention. The same sets of questions were asked in each focus group.

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