India-US collaboration to prevent adolescent HIV infection

Data analysis
Each focus group was tape recorded on an audio cassette and a written verbatim transcript was produced in Marathi. The transcript was translated into English and checked for accuracy using a forward-backward translation method [45]. In addition, the translators reviewed the transcripts to ensure conceptual as well as linguistic equivalence in the translation process [46]. In order to minimize potential bias in data analysis and interpretation, we followed Krueger and Casey’s [36] guidelines to ensure the analysis process was systematic, sequential, verifiable and continuous.

Four independent coders conducted a content analysis to identify “thematic units”, which were defined as frequently occurring sets of explanatory statements [47]. In addition, data were explored for negative incidents and divergent themes [48,49], which added rigour and validity to the results [50,51]. Interrater reliability among the four coders was determined via a frequency count strategy described by Miles and Huberman [49].

Upon completion of coding, each coder independently calculated the frequency that each category and sub-category occurred within the data. The four coders then compared the correspondence in the data analysis. When disagreement occurred, the disagreement was recorded and settled via discussion between the four coders. The total number of agreements was then divided by the total number of agreements and disagreements [49], leading to an interrater reliability of 91%.

Results

Six primary areas were identified: (1) family-based knowledge about comprehensive HIV prevention strategies; (2) family perceptions about adolescent vulnerability to HIV/AIDS; (3) feasibility of a comprehensive family-based programme to prevent adolescent HIV infection; (4) barriers to participation; (5) recruitment and retention strategies; and (6) preferred content for an adolescent HIV-prevention intervention.

Family knowledge about HIV/AIDS
There was wide variation in knowledge about HIV/AIDS among adolescents and parents. While most of the adolescent boys and girls reported that they had heard of “AIDS”, factual knowledge about HIV/AIDS was varied. For example, while some adolescent boys recognized that AIDS was a “big disease”, they did not know what it meant. One youth stated, “I have heard about it but don’t know anything about it.” In addition, some boys reported incorrect knowledge, such as believing that AIDS caused malaria. In contrast to the lack of accurate knowledge evidenced by some male adolescents, other boys reported detailed information about HIV transmission and its impact on health. One boy stated, “AIDS happens due to the HIV virus.”

Of the boys who had some knowledge about HIV/AIDS, they identified a number of possible routes of transmission, including: (1) sexual behaviour between adults or between youth; (2) having multiple sexual partners; (3) being exposed to infected blood; (4) from a pregnant mother to her child; and (5) from exposure to syringes. This group of youth also knew that HIV/AIDS could be treated with medicines, but could not be cured. When asked to identify sources of information about HIV, adolescent boys indicated that they obtained most of their knowledge from the television. Without exception, all of the boys in the focus groups indicated that their parents had not spoken to them about HIV/AIDS.

A similar pattern of results emerged from the focus groups with adolescent girls. For the most part, adolescent girls reported that they heard of the word “AIDS” and were able to identify that it was a disease. While a small number of girls indicated that their knowledge about HIV/AIDS was limited, many were able to identify potential routes of transmission. The most frequently cited mechanisms of HIV transmission included sexual behaviour between men and women, (e.g., “AIDS happens due to sexual contact. AIDS can happen due to a girl-boy or man-women physical relationship”), and through exposure to “infected blood” or a syringe that had been used on an HIV-positive person (e.g., “AIDS can happen if a needle used on an infected person is reused on another person”).

Whereas boys identified television as a primary source of information, girls reported learning about HIV/AIDS through the television, newspapers and posters placed at local health centres. In addition, some of the adolescent girls indicated that their teachers in school had discussed HIV/AIDS with them. Like their male peers, adolescent females indicated that their parents had not addressed the topic of HIV/AIDS with them.

Mothers and fathers also reported similar variation in knowledge about HIV/AIDS. While some parents reported very detailed information about HIV and how it could be transmitted, others indicated that they knew very little. In the mother focus groups, one mother explained her knowledge about HIV/AIDS as:

It [AIDS] can happen to anyone. From small children to anybody. It can happen to anybody who gets pricked by an infected needle. When in mother’s womb ... it can happen then too. If she comes to know about it, then she can take medicines and save her child from the disease. Only she can’t breast feed. This much I know.

This same level of detail was evidenced in the father focus groups, where one father explained how he arrived at his knowledge about HIV transmission:

Yes I know [about AIDS], the doctor gives information. Or the information is on the board (at the health centre). I know how to read so I was able to read. It is written that “Don’t go to outside women, because if she has AIDS then it can happen to us.” When we go to the doctor and get an injection, if it is not sterilized then we can get it. We go to the barber and if an old blade is used and if there is blood on it and if we get wounded from that blade then we too can get AIDS.

Of the parents who were aware of HIV, parents discussed sexual behaviour between men and women, sexual behaviour with female sex workers (e.g., with “outside women”), infected syringes, “contaminated blood”, and mother to child transmission as possible routes of HIV transmission. In addition, this group of parents was also aware that HIV/AIDS could be treated with medication.

In contrast, other parents indicated that they knew very little about HIV/AIDS. In both the mother and father focus groups, a small number of parents admitted to knowing “nothing” about HIV/AIDS, how the virus was transmitted, or such methods as condoms for reducing one’s risk. For example, one mother stated, “No [I] didn’t know [about AIDS] before [the focus group], now that you are telling, that we are hearing.”

This was echoed in the father focus groups, where one father stated that HIV could be transmitted by sharing drinking water with an HIV-positive person. Still other parents were unaware that HIV could be prevented within the family, as evidenced by a father’s statement that, “If one woman gets it [AIDS], one man gets it, and then everyone in the family gets it.” When asked to identify their primary sources of information about HIV/AIDS, the majority of mothers discussed learning about HIV/AIDS from the television while fathers indicated that they had received information via the radio, television, doctors, the health centre and written materials.

Largely missing from the focus group discussions was mention of the role of correct and consistent condom use as a means of protecting oneself from HIV. Neither parents nor adolescents discussed condoms as an optimal strategy for protecting oneself from HIV. Families reported low levels of knowledge related to correct and consistent condom use. In general, focus group participants provided less clear feedback in relation to the use of condoms.

Most of the families were uncomfortable with their adolescent children being sexually active outside of marriage. However, in those instances where parents knew that adolescent sexual behavior was occurring, parents reported having great concern in keeping their children safe from potential health consequences associated with risky sexual activity. For instance, one father stated that he observed his adolescent son and some of his son’s friends going into a brothel in a city located in close proximity to the target community. The brothel is a known establishment for sex work. The participating father expressed disapproval of his son’s seeking out sex workers. However, he also reported wanting his adolescent son to protect himself from sexually transmitted diseases by using condoms if he was to continue frequenting this establishment.

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