Research Brief: Community Consultation to Develop an Acceptable and Effective Adolescent HIV Prevention Intervention

Research Brief: Community Consultation to Develop an Acceptable and Effective Adolescent HIV Prevention Intervention Chrissie P.N. Kaponda, PhD, RN Barbara L. Dancy, PhD, RN Kathleen F. Norr, PhD Sitingawawo I. Kachingwe, MSN Mary M. Mbeba, MSN Diana L. Jere, MSN

HIV prevention for adolescents is urgently needed in Africa, but interventions have been slow to develop because of controversies about sex education. In this report the authors describe a four-step process used to develop a culturally and developmentally appropriate adolescent HIV prevention program for communities in rural Malawi. This is the final component of a 2-year ongoing adult HIV prevention program in Malawi. First the authors identified the risky behaviors of rural adolescents as well as cultural, developmental, and contextual factors. Next they consulted the community regarding how to use this information effectively and acceptably. Then an existing intervention was adapted based on this information. Finally, the authors piloted the intervention and made modifications based on lessons learned. This process provides a systematic way to consult with the community, thereby jointly enriching understanding, engaging the issues, and promoting support for an intervention program. Key words: HIV prevention, community collaboration, adolescents, cultural factors

Developing community-based culturally and developmentally appropriate adolescent HIV prevention programs in rural Malawi is an urgent priority. Malawi has one of the world’s most severe AIDS

epidemics, and HIV infection is a serious threat to the health and lives of young people (UNAIDS, 2004). It is estimated that 14% of all people aged 15 and up in Malawi are HIV-positive, with 10% of adults HIV-positive in the rural areas (Garbus, 2003). Moreover, age-specific prevalence data show that nearly all children under 15 are HIV-free but that many young people acquire HIV infection between the ages of 15 and 25 years. HIV prevention for girls is especially important because recent populationbased studies suggest that in sub-Saharan Africa there are on average 36 young women living with HIV for every 10 young men (UNAIDS, 2004). Despite the urgent need for HIV prevention interventions for young people, such programs have been slow to develop in Malawi as well as in many other countries because of controversies. Specifically, there is often denial in the community regarding Chrissie P.N. Kaponda, PhD, RN, is director of the Centre for Nursing, Midwifery, and Health Sciences Research and dean of research at Kamuzu College of Nursing, University of Malawi. Barbara L. Dancy, PhD, RN, and Kathleen F. Norr, PhD, are professors at the College of Nursing, University of Illinois at Chicago. Sitingawawo I. Kachingwe, MSN, is a lecturer, Mary M. Mbeba, MSN, and Diana L. Jere, MSN, is principal all at Kamuzu College of Nursing, University of Malawi.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 18, No. 2, March/April 2007, 72-77 doi:10.1016/j.jana.2007.01.001 Copyright © 2007 Association of Nurses in AIDS Care

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adolescent early sexual debut and controversy about discussing human sexuality with adolescents. To be successful, adolescent HIV prevention programs need to be culturally and developmentally appropriate and accepted by the community. The purpose of this report is to describe the process used to develop a culturally and developmentally appropriate adolescent HIV prevention program that is acceptable to communities in rural Malawi. The adolescent intervention is the final component of a research project that has mobilized health workers to bring a peer group intervention to rural communities. This project, based on the primary health care model, had been offering an HIV prevention intervention for adults in these communities for over 2 years before work on the adolescent program began (Norr et al., 2005). To ensure that this adolescent HIV prevention program would be acceptable to the Malawian community, the authors had to take into consideration cultural factors, adolescent developmental factors, and the contextual factors that facilitated current adolescent risky behaviors. Key cultural factors that affect HIV prevention for adolescents in Malawi and other African countries include gender inequality (Kesby, 2000; Susser & Stein, 2000), deeply-rooted cultural beliefs that make it very difficult for parents and other adults to provide adolescents with information and counseling about sexual matters (Fuglesang, 1997), weakened kinship and community supervision of adolescents (Zabin & Kiragu, 1998), and caretakers’ reluctance to accept changes resulting from modernization (Zabin & Kiragu, 1998; Gupta & Mahy, 2003). Major adolescent developmental factors are lack of cognitive maturity to negotiate complicated issues and make prudent decisions, risktaking and impulsivity, and adults’ inability to recognize the social-emotional development issues of adolescence (Remschmidt, 1994). Contextual factors include those aspects of rural communities’ social and physical environment that allow adolescents to engage in behaviors that put them at risk for HIV infection. Before the authors began working on an adolescent intervention, they had already completed a lengthy process of introducing the project to all relevant stakeholders and developing collaborative relationships of trust. Introducing the project and es-

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tablishing trust are important initial activities that must be completed before beginning other activities. After relationships in the community had been established, the authors engaged in a four-step process to develop a community-based adolescent HIV prevention program that would be both acceptable and effective. The first step was to conduct a series of focus groups with community adolescents and adults to elicit their perceptions of behavioral and contextual variables promoting HIV risk and of components of an acceptable and effective adolescent HIV prevention program. In the second step, the authors consulted with community leaders and parents related to an acceptable HIV prevention intervention for adolescents. Step three was the incorporation of the information gathered in the first two processes into the already established Mother/Daughter HIV Risk Reduction Intervention (MDRR), a six-session group skill-building intervention based on Bandura’s (1982) social learning theory, Fishbein and Ajzen’s (1975) theory of reasoned action, Collins’ (1990, 1991) Black feminist thought, and Bronfenbrenner’s (1979, 1994) bioecological model. The MDRR has established effectiveness with low-income African American adolescent girls in Chicago (Dancy, Crittenden, & Talashek, 2006). Elements of the adult peer group intervention, Mzake ndi Mzake (Friend to Friend), already being implemented in the same communities, were also incorporated into the adolescent intervention (Norr et al., 2005; Kaponda et al., 2002). Finally, the intervention was pilot-tested and further refined based on experiences with offering the intervention for rural adolescents.

Identifying the Context of Adolescent Risky Behaviors A series of 36 focus groups were conducted with a convenience sample of 199 adults and 196 adolescents between the ages of 10 and 19 years. The authors held separate focus groups for male and female adults and for male and female adolescents. The authors reported that behavioral variables that promoted HIV risk among Malawian adolescents were early age at sexual debut, high prevalence of sexual intercourse among the adolescents, multiple partners, and lack of condom use (Dancy et al.,

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2005). The contexts in which risky sexual behaviors occurred were schools, social dances at night, and numerous private deserted places in the community. Effective adolescent HIV prevention interventions would include information about HIV, its course, transmission, and prevention. The desired teaching strategies would include the use of videos, drama, song, and group discussion.

Community Consultation The authors presented the results from the focus groups to the rural communities in separate community meetings with adolescents and with adults. In these community meetings, the authors wanted not only to report on the results but also to elicit more information about the format and content of an effective adolescent HIV prevention program for Malawian adolescents. From these community meetings, the adolescents reported that they wanted more information about their bodies and about HIV and that they wanted parental involvement in the intervention. They also wanted more recreational activities such as sports incorporated into their everyday life. The adults also wanted their adolescents to learn more about their bodies and HIV prevention. Parents wanted boys and girls to be taught in separate groups, and they did not want the children under 12 years old to be taught about sexuality. The project’s nurse experts who are faculty at Kamuzu College of Nursing, University of Malawi, integrated these suggestions from parents and what they have learned from this project about the social relationships in these communities to identify appropriate age groupings. The authors decided that the boys’ groups and the girls’ groups should be separated into three age groups: 10 to 12 years, 13 to 15 years, and 16 and over. Traditionally, young people learned about sexuality in the context of initiation ceremonies conducted by respected elders in the community (Fuglesang, 1997). Sexual matters were generally not discussed outside of these ceremonies, and it was considered especially inappropriate for parents to talk to their children about sexual matters. Consistent with these traditional norms, parents were reluctant to engage

their children in conversations about sex. The cultural barriers regarding discussion of sexuality with young people were especially strong. Parents and community leaders were therefore very adamant in their views that a responsible adult, and not adolescent peers, should conduct the HIV prevention intervention. A creative approach was necessary to develop the leadership structure for the intervention using respected adults selected by the community and intervention leaders built upon the cultural tradition of initiation ceremonies conducted by designated elders. Traditionally, information was only given to young people when they reached the stage when they needed to use the information. Reflecting these traditional values, parents feared that early information would give tacit approval for the behavior discussed. Therefore, the parents wanted abstinence to be taught to all adolescents younger than 16 years and no information about condoms to be given to adolescents under 16 years. Sexual development was to be taught to adolescents 13 years and over but not to those 10 to 12 years of age. In considering adolescent development, the authors reported that community adults understood the physiological maturation process well. Intuitively, they understood the need to separate young people by age so that the intervention could address salient issues for each age group, but they had little awareness of the cognitive and social-emotional aspects of development. They wanted this content in the intervention, and after the content was developed for young people, they requested that it be added to the adult peer group intervention. Community discussion of the context of risky behaviors made parents more aware of the common situations that put young people in situations where they were likely to engage in risky sexual behaviors. Although not all of these situations could be addressed, the discussion made parents more aware of the importance of limiting young people’s opportunities to be in isolated areas on their own. Thus, another benefit of the community meetings was increased awareness on the part of adults about ways they could help protect young people from risky sexual behaviors. During the community meetings, parents also expressed their many concerns about raising adoles-

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cents. Parents felt that they did not have comprehensive and accurate information to guide their children. Some parents believed that children had sexual information of which the parents were not aware. Parents felt that young people no longer listened to their elders, and when challenged they would state that they had “learned at school” or refer to other authorities outside of the parents’ experience. Community adults also shared their negative experiences when trying to tell young people or their parents about risky situations and being told by the parents to not interfere. They reported that sometimes parents encouraged their daughters to obtain their own small personal items and spending money, even though they knew that the most likely way a young girl could obtain these was by having sex with men who gave them money or gifts. The community meetings helped community adults become more aware of the cultural and normative barriers that interfered with HIV prevention for community youth. Open dialogue occurred about the changing relationships between young people and parents related to rapid social change and the greater participation of young people in many aspects of change such as greater schooling and mass media exposure. Parents began to recognize that they needed to overcome the denial they had been using to avoid addressing the problem of risky sexual behavior by young people.

Developing the Intervention The information from the focus groups and community consultations was used in developing the Mzake ndi Mzake Kuunikira Achinyamata (Friend to Friend Guiding the Youth) based on the structure of the MDRR intervention. The behavioral and contextual variables were incorporated into the MDRR intervention to create culturally relevant scenarios for role-plays, group discussion, decision-making exercises, assertiveness skill exercises, and homework assignments, thus promoting acceptance of the intervention. Also, HIV games to help facilitate learning were modified to the culture and environment. The didactic content, designed to promote comprehensive and accurate information about HIV/AIDS disease progression, transmission, and prevention, was es-

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sentially unchanged. Additional content was included on the process of growing up. With the assistance of a panel of nurse experts from the University of Malawi Kamuzu College Of Nursing, the Mzake ndi Mzake Kuunikira Achinyamata was refined. These nurse experts were instrumental in making sure that the local terminology for reproductive body parts was incorporated into the manuals. The Mzake ndi Mzake Kuunikira Achinyamata was consistent with the parents’ request to have different content for the age groups mentioned above. The 10- to 12-yearold group received no content related to condoms and sexual development. Emphasis was placed on personal, general, and community hygiene and prevention of HIV/AIDS. The 13- to 15-year-old adolescents received no content related to condoms but did receive information on sexual development and abstinence. Only the adolescents over 15 years received information on both condom use and sexual development. All adolescents received information on decision-making and assertiveness training.

Piloting the Intervention The Mzake ndi Mzake Kuunikira Achinyamata was pilot-tested with six groups of young people to determine the feasibility of conducting this intervention in the community. One male and one female group was conducted with each of the three age groups. The pilot test was conducted with adolescents in a community similar in social, cultural, and economic characteristics to the rural communities in the target district in a different district close to Kamuzu College of Nursing. Changes included incorporation of words for sexual activities and malefemale relationships that were more culturally appropriate and age-specific for Malawian adolescents. In addition, after becoming aware of some misconceptions and incorrect beliefs these adolescents had about sexual matters, the authors incorporated additional group discussions designed to elicit and discuss these misconceptions thoroughly for the purpose of promoting the acquisition of factual information. Process evaluation revealed that the adolescents were eager to learn the content of the intervention. Although the adolescents initially were reluctant to engage in the group discussions and

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role-plays because these teaching techniques are not typically used in the Malawian educational system, group discussions and role-plays became valuable strategies to enhance understanding of the didactic content and to promote the acquisition of behavioral skills. The adolescents readily engaged in group discussions and role-plays after the first session and enjoyed the organized interactions with their colleagues. The adult intervention facilitators reported that the group discussions and role-plays were effective for supporting ownership of the content. The pilot test also revealed that all adolescents should have information about sexual development and condom use, contrary to the parents’ belief. Adolescents, even the youngest adolescents, were being exposed to misinformation about human sexual development and were experiencing pressure to become sexually active.

Discussion The importance of achieving community acceptance of adolescent HIV prevention and sex education programs has long been recognized (Dancy, 1999, 2003; Kirby, 1994, Rotheram-Boras 2000). However, few published descriptions have identified concrete procedures for achieving this goal. In this study, the authors engaged in a four-step process that brought together the theoretical and practical experiences of the researchers with the community wisdom of leaders, parents, and young people. The authors recognized at the outset that the intervention would need to address cultural, developmental, and contextual issues. In each of these areas, community consultation enriched the understanding of both the research team and the community. One important element that made the development of this intervention relatively conflict-free was the earlier work the authors had done on HIV prevention for adults in these communities. If the researchers or clinicians have not already developed trust and collaborative relationships, this would need to be accomplished before the process described here. This project demonstrates that this process can be used to develop an adolescent HIV prevention intervention that is acceptable to the community, developmentally appropriate, and tailored to the contextual factors that

affect risky behaviors by youth. Involving the community in the development of an intervention engages them in the issues and promotes their support for implementing the program.

Implications Clinicians and researchers planning to implement an HIV prevention program for young people need to carefully consider how they will ensure that the intervention is acceptable to the community. Although any HIV prevention intervention is potentially controversial because of the need to discuss socially disapproved behaviors, communities are especially likely to have difficulties with the acceptability of components of interventions for young people. Proceeding before full community acceptance will undermine the program and generate controversy and ill will, whereas involving the community can foster support for the program.

Acknowledgment This research was funded by the National Institute of Nursing Research, National Institutes of Health, Grant NR08058. The authors especially thank the many people in the National AIDS Commission, the Ministry of Health and Population, universities, the district health care system, traditional authorities, community leaders, parents, and young people who have supported this project.

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