Barriers to participating in a family-based intervention

Adolescents and parents identified a number of barriers to participating in a programme. Identified barriers focused on three primary areas: (1) embarrassment and fear of discussing sensitive topics like sexual behavior, correct and consistent condom use and HIV/AIDS, especially when considering gender dynamics in Indian families; (2) stigma surrounding HIV/AIDS; and (3) economic and environmental constraints.

Both adolescents and parents discussed the need to address potential feelings of embarrassment. For adolescents, feelings of discomfort emerged around the idea of having a mixed-gender programme. Although some adolescent boys and girls felt comfortable with a mixed-gender HIV/AIDS intervention, the majority wanted separate groups and felt that family communication might be more effective between mothers and daughters and between fathers and sons. The discussion of same-gender communication in the family system was more often discussed by girls than by boys. If a programme was going to use a mixed-gender approach, adolescent girls recommended involving the entire community, e.g., individuals, households, families, schools and villages, as this would lessen their embarrassment.

For their part, parents discussed how fear of negative consequences could deter their participation in a family-based programme. In the mother focus groups, some women indicated that although they wanted to talk about HIV/AIDS with their children, they were worried that their adolescents would react negatively to such conversations. However, mothers were unable to provide specific examples of how youth might respond in a negative way. Unlike their children, mothers did not identify gender in the family system as a potential barrier to participation.

In contrast, fathers indicated that they might be embarrassed discussing a sensitive topic like sexual behaviour or HIV/AIDS with their adolescent daughters. As one father stated:

When our daughters have come to age (meaning has become a teenager), it becomes awkward to speak with her by a father. So one can ask the mother of the girl to speak to her. Mother-daughter communication happens.

This sentiment was echoed by other fathers, who suggested that embarrassment could be overcome by supporting “mother-daughter” and “father-son” communication. At the same time, other fathers felt that a family-based programme was not embarrassing. “It sometimes gets a little awkward for the parents to speak to their children, but we don’t feel that,” one father said.

In addition to potential feelings of embarrassment, another barrier to participation addressed the role of stigma related to HIV/AIDS. Adolescents, mothers and fathers all described stigma related to HIV/AIDS. In the adolescent male focus groups, some boys indicated they would feel shy or scared about discussing the topic of HIV. For example, one boy stated, “This is a bad disease, and it feels weird so even I don’t speak.”

Moreover, boys discussed the fear and stigma towards people living with AIDS and how people in the village responded. One boy said, “If someone amongst us has AIDS then people will try to stay away from him. People might criticize or make fun of him or might tell him something.” Another boy said, “Anything can happen to such a person so he is kept outside the house in the village.”

Girls expressed similar fears about people living with HIV/AIDS, as evidence by the statements, “Nobody will even speak to him [person living with HIV/AIDS]” and “People will stay away from him [person living with HIV/AIDS] ... because we will get the disease.”

Similarly, mothers also indicated that individuals who were known to be HIV positive were shunned by the rest of the community. One mother stated, “If someone comes to know [about having AIDS] then who will go to his house, nobody will eat from his house not even drink water.” Fathers also discussed the role of stigma towards people living with HIV/AIDS and believed that it could deter some people from participating, as is clear from this statement, “This programme is on AIDS so people will not come ...”

At the same time, fathers also believed that stigma surrounding HIV/AIDS could be overcome by discussing the importance of prevention with community members and by highlighting the benefits for adolescents and future generations.

The final barrier to participation focused on the role of economic and environmental constraints experienced by families. Adolescents and their parents all discussed the role of work and the importance of earning money to meet basic needs, such as shelter and food. Adolescents in the focus groups often worked to help support their family and stated that they would not attend a programme that interfered with work or with school, for those youth attending school. Adolescents also stated that monsoon season could pose a serious challenge, as the weather could make it too difficult to attend a programme that required them to travel.

Parents were similarly focused on the constraints posed by work and having to meet basic needs associated with daily living. All of the parents had limited economic resources. As one mother stated, “Without work we won’t be able to sustain our life.” Fathers also noted that their work could necessitate that they travel to other villages or cities and as such, they would not be able to attend a programme that required them to attend multiple sessions. Both mothers and fathers indicated that a programme had to be flexible for their schedules and not interfere with their ability to support their families.

Recruitment and retention strategies

Adolescent boys and girls provided specific suggestions about how best to recruit and retain them into a family-based programme. Overall, adolescents recommended a face-to-face outreach, conducted by a recruiter who would visit the adolescents’ houses to invite them to participate. In addition, adolescents suggested that they would be receptive to hearing from youth already enrolled in a programme, and recommended using village friendship networks as a mechanism to reach large numbers of youth.

For adolescents, successful recruitment efforts would highlight the health benefits of the programme for both youth and the broader community. Both adolescent males and females believed that a family-based programme could have a larger community impact and that this was an important point to publicize.

Mothers and fathers also recommended face-to-face recruitment methods. Overall, parents endorsed a personalized approach, with recruiters going from house to house to provide information on the project. Both mothers and fathers mentioned the importance of drawing upon existing social networks to recruit families and emphasizing how a family-based programme would benefit the future of their children.

Parents also recommended that male recruiters should recruit fathers and sons, and female recruiters should recruit mothers and daughters. For example, one mother stated:

Women from a pada should tell people in the same pada that a meeting on health is organized and they should come. This information is in the context of the future of our children. If we only don’t listen then who will think about the future of our children. All this we can tell in our hamlet.

Similarly, a father recommended an approach where a recruiter could:

.... personally go and speak to them. What do they feel, one must personally try to make them understand and speak. You must tell him that come to the programme if you understand what is being said then make use of it, if not then you can leave the programme.

In addition, fathers felt it was important for recruiters to clearly state the goal of the programme so that families could easily understand its purpose and relevance for their lives.

Content and format of a family-based intervention

Both adolescent boys and girls wanted accurate, relevant and developmentally appropriate information. Many of the youth in the focus groups stressed the importance of giving “proper advice” about HIV/AIDS. In general, adolescents felt it important to have a proposed family-based intervention that is “comprehensive and includes content both related to abstinence and safer sex”. Adolescents expressed interest in knowing both about ways they could avoid becoming sexually active and ways they could protect themselves if they did in fact become sexually active.

Both adolescent boys and girls were clear that a programme had to be flexible, convenient and adolescent friendly. Youth identified a number of characteristics that would make a youth programme friendly, including the use of diverse types of materials and programme activities. Adolescents felt that programme information could be shared through a variety of methods, including skits or plays, songs, and posters, pamphlets and other print materials. Regardless of the medium, adolescents emphasized the importance of addressing illiteracy and suggested that information about a family-based programme needed to be provided orally and in writing, as many of their parents could not read.

Parents wanted current and factual information on HIV/AIDS, strategies for protecting oneself from HIV/AIDS, including correct and consistent condom use, and sexual behaviour. Parents were open to receiving information about HIV/AIDS in a variety of ways, including via written materials and visual images. For written materials, parents stressed the importance of addressing illiteracy in the village and of making materials available in multiple languages, e.g., Hindi and Marathi. As one mother stated, “Now we get paper but we can’t even read it ... what you will tell us face to face we will understand from there only.” Regardless of the format, both mothers and fathers stressed the importance of making programme materials adolescent friendly.