Insights from urban Indian teens on staying healthy: data from focus groups.
Many programs for American Indians, especially Indian adolescents, have been designed by "experts" in the fields of prevention, addiction, and high-risk behaviors. But few of these interventions seem to have deliberately sought the input of Indian adolescents. In developing a life skills intervention for adolescents participating in a collaborative project between a university research team and an urban Indian clinic, several groups of adolescents were invited to participate in focus groups to discuss various aspects of outreach and intervention.
Among the various ways available for collecting research data, the focus group is a special method. Krueger & Casey (2000) describe the purpose of a focus group as one of listening and collecting data that will help the researchers better understand how people think and feel about an issue, product, or service. Participants are selected because they have common characteristics appropriate to the topic under discussion. In addition, the groups are small (6-8 people), and the discussion environment is designed to be comfortable, enabling the free exchange of information. A moderator usually begins the group by establishing ground rules. For example, participants are asked to not talk over others, and to show respect for everyone's opinions. In research with minority or marginalized groups, it is especially important that the participants are assured that there is confidentiality for what is said in the group. This protection is usually characterized as the "what is said here, stays here" statement. The moderator also has a list of leading questions developed by the research team to help direct the discussion in the areas of inquiry where the team wants subjective information.
After receiving consent to continue from the participants, whether formal or informal, the moderator begins the discussion. The discussion is guided by a list of leading questions developed by the research team to help direct the group in discussing the areas of inquiry in which the team wants subjective information. The provision of food and beverage is important in helping set a comfortable atmosphere. Experienced researchers understand that the availability of food and beverage is absolutely essential when working with adolescents.
BACKGROUND ON FOCUS GROUPS AND INDIAN ADOLESCENTS
Focus groups have been utilized for a variety of purposes. What generally comes to mind is testing new products for the marketplace, be it television shows or breakfast cereals. However, focus groups are also a valuable device for assessing people's beliefs, thoughts, feelings, attitudes, and perceptions of the world around them. Focus groups with minority populations are also a way to draw out alternative perspectives on cultural issues and to elicit the functions of certain health behaviors (Kegler et al., 1999).
Focus groups have been used to explore high-risk sexual behaviors in the context of substance abuse (Nadeau, Truchon, & Biron, 2000) and to provide feedback on drug, alcohol and tobacco education programs in public schools (D'Emidio-Caston & Brown, 1998). Focus group methodology has also been used to conduct market research of adolescents' satisfaction with legal, educational, and mental health system services. In one study, 30 adolescents participated in focus groups or personal interviews as part of feasibility research for a private psychiatric hospital's proposed adolescent in-patient substance abuse treatment facility (McDermott, 1985). The adolescents' discussed their awareness of and satisfaction with existing services, and their perceptions of the program's potential financial success. Their responses were used to improve marketing outreach.
A recent dissertation explored spirituality as a protective factor against adolescent substance abuse, employing adolescent focus groups to explore spiritual beliefs (Smithline, 2000). This study found that spirituality did function as a protective factor among the more observant and religiously influenced adolescents. Those individuals without a religious background were more likely to seek spiritual experiences through drug and alcohol use. Although this study did not include American Indian youth in its participants, it is well recognized that spirituality is a very important component of Native life and may potentially protect against substance misuse in Indian communities (Jones-Saumty, Thomas, Phillips, Tivis, & Nixon, 2003).
Another recent dissertation involved focus groups conducted with African American male and female adolescents, ages 12 to 18. This research found that youth reported experiencing higher depressive traits associated with the onset of participation in substance abuse (Taylor, 2000).
There is a paucity of information in the research literature based on adult or adolescent American Indian focus groups. Focus groups identified convened with Native populations are largely developed to discuss various aspects of high-risk behavior and substance misuse. One study examined the risk of contracting Human Immunodeficiency Virus infection among Indian drug users (Baldwin et al., 1999). The focus groups in this study were convened in four sites in three states (Alaska, Colorado and Arizona). The focus group participants strongly recommended utilizing key members of Native communities to conduct outreach and intervention, involving Native people as sources of information, and identifying and incorporating local and tribally relevant forms of delivering the message. Participants also strongly advocated linking alcohol prevention education to HIV/AIDS education, with a special emphasis toward youth (Baldwin, et al., 1999).
In exploring the role that alcohol plays in creating or contributing to health disparities between reservation and non-reservation Indians, Jones-Saumty and colleagues conducted 15 focus groups across the state of Oklahoma. Participants were asked to rate the importance of substance abuse issues in their communities and to reflect on how effective carious approaches were in intervening in substance misuse (Jones-Saumty, Thomas, Phillips, Tivis, & Nixon, 2003). Participants identified a wide range of interventions, including spirituality and programs targeting adolescents. Three other recent research papers employing focus group data explored Indian adolescent tobacco use, its functional value for youth (Kegler et al., 1999), the social context of experimenting with cigarettes (Kegler, Clever & Kingsley, 2000), and the influence of family on Indian adolescent smoking behavior (Kegler, Cleaver & Yazzi-Valencia, 2000).
The urban Indian clinic and the Addictive Behaviors Research Center (ABRC) at the University of Washington worked collaboratively to develop a skills-based intervention curriculum. In order to obtain urban Indian adolescent perspectives on these materials, Indian youth from local high schools were recruited to participate in a series of focus groups. The original intention of the focus groups was to review recruitment materials, screening instruments, and the intervention content. However, as it turned out, the discussions ranged much more widely, touching on youth perceptions about interventions and treatment, and revealing important insights into youth's perceptions of urban environment.
This project, funded by the National Institute on Alcohol Abuse and Alcoholism, was a part of a larger feasibility study designed to: (1) identify and implement brief screening instruments that could be used during clinical intake; (2) identify youth at risk for substance misuse problems; (3) administer an extensive assessment battery to learn more about urban Indian youth risk status; (4) invite youth to participate in one of two 8-session groups; (5) re-administer part of the assessment battery to assess project outcomes; and (6) obtain evaluative information on the process. As a part of the project's protocol, youth at increased risk for alcohol and other drug use, self-harm, and violent tendencies or overt behaviors, would be referred to the clinic and other appropriate programs for counseling and more intensive intervention if indicated.
Indian youth were recruited from four local high schools and one alternative high school. Overall, 25 participants (12 boys, 13 girls) participated in four focus groups over the six-month period. Participants' ages ranged from 15 to 20 among the males and 12 to 20 for the females. The average age of the males was 16.8 years, and for the females average age was 17.3. Although Indian adolescents between the ages of 13 and 19 were the population of interest, slightly younger or older youth were allowed to participate on occasion. This primarily occurred when the youth was somehow related to one or more of the other participants and was interested in staying and contributing his or her perspective. Most participants attended only one focus group, while two participants overlapped. Clinic outreach staff provided scheduling and transportation support. University graduate students working on the project facilitated the groups.
The Indian clinic had recently completed participation in the Robert Wood Johnson-funded Healthy Nations project. A major emphasis in this project was activities developed for Indian youth. These included a computer training program supported by Microsoft Corporation, a summer theater training and performance event, and year round activities for youth such as bowling, basketball, go-carting, museum excursions (the Experience Music Project is located in Seattle), experience with Indian-identified crafts, and dancing in powwows. The craft sessions were often related to preparation of regalia for the pow-wows.
Recruitment was conducted in the Seattle Public School System with its permission. Schools with a known Indian youth enrollment were identified, and school counselors helped secure names for mailing of announcements and permission forms. Many of these schools also had Indian clubs, which the clinic youth outreach coordinator helped to facilitate. Interested youth were signed up and a letter explaining the project and asking for parental permission to participate were sent to the youths' home or place of residence. While youth actively assented to participate, passive parental consent was employed in the recruitment effort, meaning that unless parents objected to their child's participation, the youth was allowed to attend the focus groups. Follow-up phone calls were made to the parent(s) of interested youth in order to answer questions about the project and the goals of the focus groups. Follow-up phone calls were also made to the students to remind them about the upcoming group meeting times and places.
MANAGING THE GROUP
Efforts were made to create a comfortable and culturally relevant atmosphere for the focus groups. Transportation to and from the focus group was provided for participating youth when needed. Food was provided in the form of pre-session snacks and pizza afterward. The groups met for 90 minutes each. Participants received an incentive gift certificate for $15.00 from major retail stores or one of the regional malls. Certificates could be saved so that additional incentives could be added to the focus group incentive (e.g., participants who also took the research assessment, participated in the 2-day, 8-session intervention, and took the follow-up assessments could receive a maximum of $60.00 in incentives). Two clinical psychology graduate students facilitated the focus groups. Whenever possible, the groups were co-lead by a male and a female moderator. Notes were taken during the discussion as well as audiotapes of each session. The facilitators combined and compiled their notes following each session. A direct transcription of the tape was not made, but the tape was held in reserve to clarify key discussion points.
FOCUS GROUP ISSUES
One of the greatest barriers to working with urban Indian youth is that of transportation (Moran, 2002). Seattle has no identifiable Indian enclave and participants lived throughout the city. Thus, to get youth safely from school or residence to the university or clinic and then return them home required a considerable investment in time and manpower. One approach was to utilize local taxi cab service, but several problems arose with this method, including cabs getting lost both on pick up and delivering the youth to the university site for program participation. One cab driver asked inappropriate questions of a female youth participant, causing concerns for safety of the participants. Bus passes were available, but the university research team was responsible for safe pick up and delivery, which ruled out unescorted bus trips. In the end, clinic vans were employed to pick up and deliver youth, which required both additional manpower and time.
A second issue for the research team was locating the youth that had assented. Urban Indian youth are highly mobile, and can move from house to house in the course a several weeks. They may be with one or both parents, a single parent, an aunt or uncle, a guardian or foster parent, or in other arrangements. Moran (1999) and other urban Indian researchers have indicated that this was an issue facing their projects as well.
A third issue for research teams is the cultural expectation and custom that food and drink are provided for any social gathering. The giving of gifts of food, and sometimes crafts or other tokens of respect, is deemed essential in Indian, as well as other minority communities. Federal grants generally prohibit any research funds being spent on food and drink for meetings, unless the research specifically addresses food as a research component. This requires the research team to either seek other sources of funding or to pay out-of-pocket to meet the obligation of these traditional expectations.
FOCUS GROUP RESULTS
The four focus groups convened by project were valuable for a number of research insights. Participant observations included suggestions for outreach and behavioral risk assessment. The youth indicated that they were not deterred by the questions on substance use, especially if they were asked privately and not in a group setting. Some youth felt that questions about depression, family problems, sexual activity, sexually transmitted diseases, and pregnancy might make other youth uncomfortable. There was much discussion about whether youth felt comfortable answering these types of questions honestly. A prevailing attitude was "damned if you do, and damned if you don't" in that teens felt that it was important to answer the questions honestly and share this information with providers, but there was also fear that these answers might result in a referral to treatment. The adolescents concurred that they would not want to answer honestly unless they had guarantees of confidentiality. They were concerned that data collected might end up in their medical file where coaches or school officials could have access to it. What happens to any data collected is very important to Indian adolescents.
The youth did not want to elaborate on their perceptions and statements. It was important to them to be asked and to share an opinion, but most of the participants did not want to get into a discussion following their observations. Focus group facilitators honored this need, so many youth observations do not have explanations or elaboration. The research team suspected that given time and an increased opportunity to build trust, it was highly likely that many youth would have further explained why they believed as they did. Nevertheless, their observations are provocative and may want to be considered by researchers developing youth interventions in the future.
SCREENING & ASSESSMENT METHODS
The youth indicated they would also be more comfortable answering questions about substance use, sexual behavior, and family issues (as examples) with someone they did not know. They also pointed out areas they believed should have been assessed but the screening instruments failed to take into account. These areas included fitness or sports activities that youth enjoyed, and social support networks, such as groups or clubs. Youth also suggested that these assessments ask positive questions prior to negative ones (or questions about healthy activities before questions about risk behaviors). The participants' opinion was split about whether one would be more honest using a self-report format or being interviewed. The participants also indicated that they would feel very uncomfortable if someone in the school environment, such as a drug counselor was asking these questions. They wondered if a "medical person" should be asking the questions (the project used psychologists-in-training, who are a type of health professional). One youth also observed that he might not be completely honest with a physician about his drug use because he did not want to lose the respect of the provider.
EARLY INTERVENTION EDUCATION
In contradiction to adult perceptions and evaluation research on "appropriate messages", the youth thought that movies and messages that used scare tactics (i.e., crashes, blood, and guts) and "disgusting pictures" were "good" intervention strategies in that they get youth attention. Focus group participants indicated that when discussing the effects of alcohol and other drugs on the body, they would like to see diseased livers, pickled brains, and babies with alcohol-related birth defects. They reported that these very visual images are effective at impacting their opinions and tend to stand out in their memories more than educational information provided in a more conventional manner.
There were mixed perceptions about youth treatment for substance misuse. Across all focus groups, some youth believed treatment did help, while others did not believe that treatment was useful. When asked about treatment issues, the participants indicated that there was never anything new. Substance abuse treatment sessions, as perceived and/or experienced by the youth were always the same kids, same adults, and same topics, over and over again. An example offered was Alcoholics Anonymous (AA) meetings. According to the youth, there were always "too many adults" and the adults spoke too much. Adults also had a tendency to talk down to young people, calling them "little guys" or "kids." Participants felt the adults in these groups had no respect for youth and stated that they would prefer to hear from their peers. One youth, however, did note that he felt the adult stories gave him hope that he still had a chance to change before he ended up like the recovering alcoholics he saw. But youth in another focus group indicated that they believed AA only worked for adults, not teen-agers. Finally, some of the youth observed that 12-step programs might present difficulties for them because there were perceived conflicts with developing personal spiritual beliefs.
The questions about screening for substance use led to discussions about treatment. Youth were asked how treatment approaches could be developed to demonstrate more respect for youth. The youth responded that days and times of treatment should be adapted to their schedules. Some believed that working with adolescents individually to help identify the best programs would be helpful. Also, youth asked for help to recognize risks for relapse and how to avoid these risks. Focus group participants indicated that being kicked out of programs because of a relapse only added to feelings that nothing could help them. Adolescents were very opposed to "preaching total abstinence". Participants said that youth just shut down and stop listening when abstinence comes up.
Teen help or hotlines were also not perceived as useful. This, despite the fact that many of the focus group participants had cell phones, suggested that Indian youth would not call a helpline if they needed to talk to someone. This might be an expression of underlying perceptions that such community services are not Indian friendly or culturally aware.
When asked about barriers to getting help, the youth identified: (a) personal stubbornness, (b) peer pressure, (c) environmental cues encouraging substance misuse (such as music, certain places), (d) denial of problems--until caught by the law, and (e) no incentives to go to treatment. Some youth indicated that financial incentives (like this research project) might be an incentive to enter treatment. Youth in other focus groups also stressed the importance of being exposed to an environment that encouraged activities other than drinking. Having a place to go where youth could have fun as an alternative to drinking would be great. Youth also observed that mentors who were previous users would be helpful. They preferred mentors closer to their own age, but indicated that mentors "up to early 30's" would be acceptable. Older mentors would be all right as long as they could relate to the youth and would "say the right things."
ACTIVITIES FOR YOUTH
Because Indian youth perceived that exposure to drinking environments was a major contributor to adolescent substance misuse, they felt having places where Indian teens could go as alternatives to drinking environments would be important. However, these must be places with "fun" activities. Many focus group participants agreed that there were not many activities available for them. A popular activity with several youth was the experience of "sweating" in a sweat lodge. This also provides an opportunity for spiritual development and traditional learning. Mini powwows planned by and for youth were also mentioned as appropriate and desired activities. One youth commented that skipping school was due to seeing schoolwork as a "chore." If school were "fun", kids would be more apt to attend classes and stay in school. One activity held as important was the availability of a Native American Club at school. The youth indicated more schools should have these social outlets.
The youth were asked to list activities that urban Indian youth would enjoy. The teens identified the following: hiking in the mountains; playing stick games (a Pacific Northwest tradition); beading & looming; training on how to set up tee-pees (Plains Indian traditional housing); having more opportunities to speak with Elders; learn more about Story Telling; more experiences with Sweat Lodge ceremonies and Talking Circles. Youth indicated that all of these activities were periodically available in their urban area, but they were particularly interested in seeing the opportunities for these experiences increased and more frequently available.
The research team endeavored to employ the majority of adolescent suggestions in the development of a life skills-based substance abuse curriculum. However, in reviewing and compiling the data, one youth observation struck the researchers and SIHB staff as very important and worthy of follow-up. Youth seemed especially interested in activities that increased their exposure to Native culture, skills, history, and spirituality. Activities that bring youth together just to have fun were also important. The biggest problem the research team encountered was the difficulty of assuring safe transportation that fell within the clinic and university liability constraints, as well as grant protocols and human subjects regulations.
Several schools in the public school district do provide time and space for Native Clubs, but there may be further issues about these clubs that Indian youth would like to explore and expand upon. It would also be helpful to explore with Indian teens why they feel the "disgusting" pictures of alcohol and drug damaged bodies and babies are "good" for educational sessions. Because these illustrations develop tolerance for such situations, or because they really do help teens think about the consequences of their behaviors?
Other focus groups conducted with Indian adolescents have reported that social settings and substance using environments are major contributors to high-risk behaviors. Getting youth to share with one another "start stories" about smoking (or drinking) pro vide important clues to circumstances and environments that encourage and promote substance misuse (Kegler, Cleaver & Kingsley, 2000). Settings and environments may be important areas for expansion of research, as well as better understanding what motivates and influences youth to take up harmful behaviors. Focus group participants also observed that it is important to ask whether a teen comes from the reservation or was born and raised in the city. Social context by gender as well as geography may also yield clues about influences and perceptions.
The youth participating came from many tribes representing different cultural areas. In the focus groups, the largest numbers of youth were of Sioux descent, but there were also youth from tribes in the Southwestern and Pacific Northwest, and one individual from First Nations Canadian bands. As only a few adolescents generated these observations, their perceptions and concerns cannot be taken to represent all Indian youth. However, their insights and suggestions should be considered when planning cross-cultural interventions. The information they provide contains valuable insights that we may not have had before, but their guidance is just that: guidance, and suggestions and cautions for future research projects. We owe them all a debt of gratitude and thanks for their willingness to share with the research team what they saw, felt, and believed.
Note: This research was supported by grant RO1-AA12321 from the National Institute on Alcohol Abuse and Alcoholism. Dr. Alan Marlatt, Director of the Addictive Behaviors Research Center, Department of Psychology, University of Washington, Seattle, is the Principle Investigator, and Drs. Mary Larimer, Department of Psychiatry, and Pat Mail are the co-P.I's.
Responsibility VII. Communicating Health and Health Education Needs, Concerns, and Resources
Competency C. Select a variety of communication methods and techniques in providing health information.
Subcompetency 4: Use culturally sensitive communication methods and techniques.
Baldwin, J. A., Trotter, R. T. III, Martinez, D., Stevens, S. J., John, D., & Brems, C. (1999). HIV/AIDS risks among Native American drug users: Key findings from focus group interviews and implications for intervention strategies. AIDS Education and Prevention, 11(4), 279-292.
D'Emidio-Caston, M., & Brown, J.H. (1998). The other side of the story: Student narratives on the California drug, alcohol, and tobacco education programs. Evaluation Review, 22(1), 95-117.
Jones-Saumty, D., Thomas, B., Phillips, M. E., Tivis, R., & Nixon, S. J. (2003). Alcohol and health disparities in nonreservation American Indian communities. Alcoholism, Clinical and Experimental Research, 27(8), 1333-1336.
Kegler, M., Cleaver, V., & Kingsley, B. (2000). The social context of experimenting with cigarettes: American Indian "start stories." American Journal of Health Promotion, 15(2), 89-92.
Kegler, M., Cleaver, V., & Yazzi-Valencia, M. (2000). An exploration of the influence of family on cigarette smoking among American Indian adolescents. Health Education Research, 15(5), 547-557.
Kegler, M. C., Kingsley, B., Malcoe, L. H., Cleaver, V., Reid, J. & Solomon, G. (1999). The functional value of smoking and nonsmoking from the perspective of American Indian youth. Family and Community Health, 22(2), 31-42.
Krueger, R. A., & Casey, M. A. (2000). Focus Groups: A Practical Guide for Applied Research (3rd Ed.). Thousand Oaks, CA: Sage.
Moran, J.R. (1999). Preventing alcohol use among urban American Indian youth: The Seventh Generation Program. Journal of Human Behavior in the Social Environment, 2(1/2), 51-67.
Moran, J.R. (2002). Urban Indians and alcohol problems: Research findings on alcohol use, treatment, prevention, and related issues. In E D. Mail, S. Heurtin-Roberts, S. E. Martin, & J. Howard (Eds.), Alcohol Use Among American Indians and Alaska Natives (pp. 265-292). Rockville, MD: National Institute on Alcohol Abuse and Alcoholism, Research Monograph No. 37, NIH Publication No. 02-4231.
Nadeau, L., Truchon, M., & Biron, C. (2000). High-risk sexual behaviors in a context of substance abuse: A focus group approach. Journal of Substanee Abuse Treatment, 19(4), 319-328.
Smithline, C. W. (2000). Spirituality as a protective factor against adolescent substance abuse. Ann Arbor, MI: Dissertation Abstracts International: Section B: The Sciences and Engineering, Vol. 61 (5-B), 2799.
Taylor, O.D. (2000).Adolescent depression as an antecedent to substance abuse. Ann Arbor, MI: Dissertation Abstracts International: Section B: The Sciences and Engineering, Vol. 61 (l-B), 567.
Patricia D. Mail MPH, PhD, CHES, Sandra Radin, MS, C. June La Marr, PhD, Marie A.Goines, BS, Karen K. Chan, PhD, and Mary Larimer, PhD are affiliated with the Addictive Behaviors Research Center, Department of Psychology at the University of Washington. Elizabeth H. Hawkins, PhD, MPH is affiliated with the Oregon Health and Sciences University. Arthur W. Blume, PhD is affiliated with the Department of Psychology at the University of Texas at El Paso. Chris Chastain is affiliated with the Seattle Indian Board. Address all correspondence to Dr. Patricia D. Mail, 2910 North 30th Street, Tacoma, WA 98407-6334; PHONE: (253) 752-1475; FAX: (253) 925-5715; E-MAIL: email@example.com