Evaluation in Programs

A Qualitative Evaluation of a Faith-Based Breast and Cervical Cancer Screening Intervention

for African American Women

Alicia K. Matthews, PhD Nerida Berrios, BA

Julie S. Darnell, MHSA, AM Elizabeth Calhoun, PhD

This article presents a formative evaluation of a CDC Racial and Ethnic Approaches to Community Health (REACH) 2010 faith-based breast and cervical cancer early detection and prevention intervention for African American women living in urban communities. Focus groups were conducted with a sample of women (N = 94) recruited from each church participating in the intervention. One focus group was conducted in each of the nine participating churches following completion of the 6-month REACH 2010 intervention. Transcribed data were coded to identify relevant themes. Key findings included (a) the acceptability of receiv- ing cancer education within the context of a faith community, (b) the importance of pastoral input, (c) the effectiveness of personal testimonies and lay health advocates, (d) the saliency of biblical scripture in rein- forcing health messages, (e) the effectiveness of multimodal learning aids, and (f) the relationship between cervical cancer and social stigma. Study findings have implications for enhancing faith-based breast and cervical cancer prevention efforts in African American communities.

Keywords: faith-based intervention; breast cancer; cervical cancer; African American women

Primary among the target strategies for reducing cancer health disparities is to increase access to and participation in cancer early detection screening by racial and ethnic minorities (United States Department of Health and Human Services [USD- HHS], 2000). Breast cancer and cervical cancer are two important foci for reducing cancer health disparities among underserved minority women because of the wide- spread availability of effective early detection screening methods for these cancers (United States Preventive Services Task Force, 1996). African Americans in particular are an important target population for outreach screening efforts (Blackman, Bennett, & Miller, 1999; Hayward, Shapiro, Freeman, & Corey, 1988; Mamon et al., 1990;

643

Alicia K. Matthews, University of Illinois, College of Nursing, Chicago. Nerida Berrios, Julie S. Darnell, and Elizabeth Calhoun, Northwestern University, Institute for Health Services Research and Policy Studies, Chicago, Illinois.

Address correspondence to Alicia K. Matthews, University of Illinois at Chicago, College of Nursing, 845 S. Damen Ave., Chicago, IL 60612; phone: (312) 996-7885; e-mail: [email protected].

This study was funded by the Centers for Disease Control and Preventions/REACH 2010 (Grant CDC 00121). The authors would like to acknowledge the contributions of the REACH 2010 coalition members.

Health Education & Behavior, Vol. 33 (5): 643-663 (October 2006) DOI: 10.1177/1090198106288498 © 2006 by SOPHE

Marcus et al., 1992; Swan, Breen, Coates, Rimer, & Lee, 2003; USDHHS, 2000). Faith- based interventions offer a potentially effective strategy for increasing access to health education and screening programs for African Americans and other underserved popu- lations (Kerner, Dusenbury, & Mandelblatt, 1993; Kotecki, 2002). In this article, we present a formative evaluation of a CDC Racial and Ethnic Approaches to Community Health (REACH) 2010 faith-based breast and cervical cancer early detection and pre- vention intervention for African American women living in urban communities.

Rates and Outcomes of Breast and Cervical Cancer for African American Women

Breast cancer is the second most common cancer in women, with an estimated 203,500 new cases expected to occur among women in the United States each year (Armstrong, Hall, & Wingo, 2002; Ries et al., 2000). Although cervical cancer is less common than breast cancer, statistics for 2003 suggest that 12,200 women would be diagnosed with cervical cancer and about 4,100 women would die as a result of the dis- ease (American Cancer Society [ACS], 2002). Breast and cervical cancer survival rates are improving for most groups of women; however, African American women are lag- ging behind in the gains being achieved in 5-year cancer survival rates (ACS, 2000, 2002; Armstrong et al., 2002; Ries et al., 2000).

Researchers have identified a clinical basis for differential cervical and breast cancer survival rates based on ethnicity (Edwards, Gamel, Vaughan, & Wrightson, 1998; Lannin, Mathews, & Mitchell, 1998). Primary among these clinical factors is that African Americans are more likely to be diagnosed with more advanced stages of cancer com- pared with Caucasians (Ghafoor et al., 2002). For example, routine screening with Pap tests has increased the likelihood of detecting preinvasive lesions or early stage disease, resulting in survival rates of greater than 90% in women falling into those diagnostic cat- egories (ACS, 2002). Approximately 60% of the cervical cancers diagnosed in the United States occur in women who have never received a Pap test or who have not been screened in the past 5 years (National Institutes of Health, 1996). Similarly, research specific to breast cancer attributes a proportion of the racial and ethnic disparity in survival rates to barriers to cancer early detection screening (Edwards et al., 1998; Lannin et al., 1998). Consequently, a reduction in breast and cervical cancer incidence and mortality rates could be attained by increasing screening among women who do not adhere to recom- mended screening guidelines (Saslow et al., 2002; Swan et al., 2003). Innovative strate- gies are needed to improve breast and cervical cancer educational outreach and screening among underserved populations of women.

Faith-Based Health Interventions

According to data from the 1994 General Social Survey (J. A. Davis & Smith, 1994), 55% of adults in the United States attend religious services at least once a month. Rates of church attendance are even higher among African Americans, with 67% of adults attend- ing church at least once monthly (J. A. Davis & Smith, 1994). As such, churches represent a potential venue for health outreach and education in the general population as well as underserved subpopulations (Fox, Stein, Gonzales, Farrenkopf, & Dellinger, 1998).

Over the past several years, a growing body of literature has supported the role of culturally specific, church-based programs in improving the health status of vulnerable populations (Kerner et al., 1993; Lasater, Becker, Hill, & Gans, 1997) including African

644 Health Education & Behavior (October 2006)

American communities (Kerner et al., 1993; Kotecki, 2002). For example, the church has been used as a convenient and meaningful intervention site for a variety of health programs including smoking cessation (Stillman, Bone, Rand, & Levine, 1993), pre- vention and management of hypertension (Smith, 1989), cardiovascular disease pre- vention (Turner, Sutherland, Harris, & Barber, 1995), prostate cancer education (Weinrich et al., 1998), asthma education (Ford, Edwards, Rodriguez, Gibson, & Tilley, 1996), cervical cancer control programs (D. T. Davis et al., 1994), and maintenance of mammography screening (Duan, Fox, Derose, & Carson, 2000), to name a few.

Church-based interventions are likely to be effective in African American communities because they capitalize on four important principles (Kotecki, 2002): the central role of the church in the African American community (Hatch & Derthick, 1992); the strong link between faith and health in the African American community (Stolley & Koenig, 1997); the acceptability of addressing educational, physical, and social issues in a church setting (Braithwaite, & Lythcott, 1989; Olson, Reis, Murphy, & Gehm, 1988); and the increased efficacy of bringing health education to people within their belief context (Kotecki, 2002). In addition, health education volunteers from within the church organization have been shown to effectively deliver behavior change programming while also providing a social support system for adopting and maintaining new behaviors (Lasater et al., 1997).

To increase the effectiveness of faith-based interventions in underserved communi- ties, additional research is needed to identify best practices within a faith-based context. Moreover, additional information is needed to inform the conduct of behavior change interventions in the unique community environment of a religious institution. These gaps in the literature could be addressed by obtaining process data on faith-based inter- ventions conducted in underserved communities.

Formative evaluations are an acceptable strategy for identifying and refining the crit- ical elements of an intervention program (Bhola, 1990). The purpose of a formative evaluation is to ensure that the goals of the intervention are being achieved and to iden- tify and improve problem areas (Hardy & Boaz, 1997). Qualitative methods are appro- priate in the conduct of formative evaluations (Patton, 1997). For example, focus groups can be used for program development and evaluation (Krueger & Casey, 2000), to gain clarity on the way people experience a program (Hebbeler & Gerlach-Downie, 2002), to obtain information on participants’ attitudes and values (Lutenbacher, Cooper, & Faccia, 2002), and to clarify and add detail to the information obtained from quantita- tive surveys (Hebbeler & Gerlach-Downie, 2002; Naylor, Wharf-Higgins, Blair, Green, & O’Connor, 2002). As such, qualitative studies are an appropriate and useful tool for guiding intervention planners in the design of new programs or the refinement of programs that reach identified outcomes (Hebbeler & Gerlach-Downie, 2002).

Specific Aims

The objective of this study was to conduct a qualitative formative evaluation of a CDC REACH 2010 faith-based breast and cervical cancer early detection and preven- tion intervention for African American women living in urban communities. The over- arching research interest of the REACH 2010 education and screening intervention was to determine if faith-based interventions are effective at increasing (a) knowledge about breast and cervical cancer risk factors and screening guidelines and (b) intentions to adhere to cancer early detection screening recommendations.

A formative evaluation of the REACH 2010 breast and cervical cancer education and screening program was conducted at the conclusion of the first 6 months of the

Matthews et al. / Faith-Based Cancer Screening Intervention 645

intervention. The qualitative phase of the evaluation sought to obtain additional infor- mation regarding the following five questions: What are participants’ attitudes regard- ing the role of the church in promoting health? How aware were participants of the various program and church-sponsored breast and cervical cancer activities? How effective was the breast and cervical cancer education/curriculum? What were facilita- tors and barriers to cancer screening? What recommendations did participants have for improving the intervention program? These questions were used to understand whether the faith-based cancer intervention was experienced as appropriate and acceptable, to identify and provide feedback on key elements of the intervention, and to determine how to improve the overall impact and effectiveness of the program.

Given the paucity of information about the conditions most conducive to effectively providing faith-based cancer prevention programs, findings have implications for estab- lishing best intervention practices within religious institutions, aiding in the identifica- tion of new areas of investigation, and informing health educators about strategies for improving faith-based cancer screening programs.

METHOD

Procedures

Overview of Focus Group Methodology. Qualitative methods such as focus groups are useful tools for investigating a new area of research, designing questionnaires, developing new intervention protocols, and interpreting findings (Denzin & Lincoln, 2003; Morse, 1994). In addition, qualitative methods are appropriate when conducting research in communities about which very little information exists (Bernard, 1994; Matthews, Cummings, Thompson, List, & Olopade, 2000).

In a focus group, relatively homogeneous groups of participants are brought together to discuss a specific topic (Denzin & Lincoln, 2003). Unlike a probability sample-based survey, the unit of analysis in the focus group is the group, not the individual (Krueger, 1994). As such, the observations drawn from individuals are not independent nor are the individuals or the groups a probability sample from a known population (Goldman & McDonald, 1987; Krueger, 1994). Specific guidelines for sample size in focus group studies have not been established. Nonetheless, Morse (2000) suggested that a total of 30 to 40 participants provide sufficient breadth of input to explore a new area. More important, saturation of themes is a better determinant of whether additional focus groups should be conducted rather than a given number of study participants (Krueger & Casey, 2000). Saturation refers to the point at which no additional themes are gener- ated when data from additional participants are included (Krueger & Casey, 2000). Saturation was reached in terms of new themes and diversity of opinion with our sam- ple of 94 participants.

REACH 2010 Breast and Cervical Cancer Education Intervention. The main goals of the REACH 2010 faith-based health promotion intervention were to increase breast and cervical cancer knowledge and screening among underserved women. Contacts were made with more than 700 women as part of the intervention. Female congregation members of participating churches were the target audience for the intervention. Churches were eligible for participation if they were located in communities with high

646 Health Education & Behavior (October 2006)

proportions of African Americans, high proportion of community members living at or below the poverty level, and high incidence rates of cancer based on health department census statistics. Table 1 shows basic descriptive information about the participating churches and the community-level data for the neighborhoods surrounding participat- ing churches. Given that congregation members may travel from other communities to attend a church, the extent to which the sociodemographic characteristics of each member of a participating church match those of the surrounding community is unknown. Furthermore, several of the churches were located in more economically diverse communities. However, demographic data from our program participants sug- gest that a significant proportion of women with lower education and socioeconomic status are being reached by our intervention (see Table 2).

As part of the larger intervention project, women in participating churches were exposed to 6 months of education and outreach activities focused on increasing cancer knowledge and early detection. Intervention activities included both “standard” and “variable” components. Standard educational activities were developed by the REACH intervention team and were delivered in a uniform manner at all participating churches. Variable educational and outreach activities were those initiated and delivered at each individual church.

One to two standardized education sessions were held at each church. Delivery of the standard educational curriculum was based on a “train the trainer” model. This model required that each church identify one to two church members to receive train- ing from the intervention staff to become lay health educators. After training was received, lay health educators delivered both the standard and variable educational activities at their churches. Lay health educators taught from a culturally specific, faith- oriented education curriculum developed by the REACH 2010 intervention team. The curriculum also included demonstrations of breast self-examinations and information about local resources for mammograms and Pap smears. At each church, educational events were publicized by the lay health educators and reinforced by an announcement from the pastor.

Following the standardized education sessions, lay educators from each church team developed and promoted their own unique package of cancer awareness activities. The variable church-sponsored activities were delivered by lay educators and meant to increase awareness and cue screening behaviors. Sample church-sponsored variable activities included recruiting congregation members to personal testimonials about experiences with breast or cervical cancer, integrating messages about cancer screen- ings into weekly church sermons, including screening reminders in church bulletins, establishing health ministries, and facilitating access to clinical screening services. Additional church-initiated strategies included posting breast and cervical cancer infor- mation in church newsletters, hosting snack and chat groups, sending out cancer screen- ing reminder cards, and sponsoring Breast Cancer Awareness Month events.

Once each church had completed all of the standards and variables outlined in its individual plan, a two-part evaluation process was conducted. The first part of the eval- uation consisted of a written follow-up survey of female congregation members at par- ticipating churches to track changes in knowledge and screening behaviors and effectiveness of the intervention among women exposed to the intervention. Further aims were to identify which aspects of the intervention were effective in increasing knowledge and cueing women to seek timely screening services. (Presentation of the quantitative findings is beyond the scope of this article.)

Matthews et al. / Faith-Based Cancer Screening Intervention 647

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Although survey data are useful in conducting program evaluations, important process detail may be lost. Using focus groups after a survey can add detail to the infor- mation generated by a quantitative survey (Hebbeler & Gerlack-Downie, 2002; Naylor et al., 2002). Therefore, the second part of the evaluation consisted of a series of focus groups. Focus group participants were a subsample of the women who completed the 6-month follow-up survey. The aim of the focus group evaluation was to gather addi- tional data about the intervention components that were perceived to be the most effec- tive in increasing awareness and promoting screening behavior.

Focus group participants were asked to provide honest feedback about the REACH 2010 standard programming and the variable activities sponsored by their individual churches. To facilitate open communication and to ensure participants that their com- ments would be kept confidential and anonymous, demographic information was not collected from focus group participants. Demographic data on the entire sample of women completing the 6-month written survey are included in Table 2. The demo- graphic composition of the focus group participants is thought to approximate that of the larger sample of study participants. However, the lack of demographic data on focus group participants is an acknowledged limitation of the study.

Recruitment. The pastor from each church selected a lay health advocate from the congregation to oversee the standard and variable intervention activities at that site, including participant recruitment. The lay health advocate used a standardized screen- ing form when contacting women to participate in the focus groups. Focus group par- ticipants were obtained in one of two ways. First, a volunteer sample of congregation members were recruited from the target churches and enrolled into the study. Second, a purposive selection of attendees (Patton, 1990) who completed one of the standard education sessions were invited to participate in the focus groups. Combined, these two recruitment strategies increased the likelihood that a variety of factors such as income, age, educational backgrounds, and participation in standard educational sessions were accounted for in the final focus group sample.

Participant Enrollment. Eligibility criteria for participating in the focus groups included being (a) female, (b) a church attendee, (c) English speaking, (d) aged 18 years or older, (e) able to give informed consent, and (f) willing to participate in a focus group. Individuals responding to study recruitment efforts were screened for eligibility by the lay health advocate either in person or by telephone. Women meeting eligibility criteria were given an explanation of study purposes, the focus group process, and the benefits and risks of participating in the study.

Conduct of Focus Groups. A focus group was conducted with female congregation members from each of the participating African American churches (N = 9) following completion of the 6-month intervention. Each focus group session included approxi- mately 6 to 10 women, for a total of 94 participants. Focus groups were conducted according to standardized methodology established by Krueger (1994) and included using trained moderators (N = 4) to guide the structured discussion, holding immediate postsession debriefing to summarize and highlight important findings, and carefully reviewing verbatim transcriptions of audiotapes of each session.

The moderators facilitated each focus group session using a study guide (outlined below). An interdisciplinary team of researchers developed the moderator’s guide. Each focus group session lasted approximately 2 hr and was audiotaped and professionally

Matthews et al. / Faith-Based Cancer Screening Intervention 649

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transcribed. Written consent was obtained before focus group participation. Participants received $25 for their involvement.

Analyses. Qualitative data transcribed from the focus group sessions were coded and managed using a computer software package, QSR NUD-IST NVivo 1.3 (Richards, 1999). While keeping the original evaluation questions in mind, we sorted, categorized, and arranged the statements into themes. When necessary, themes were modified or fur- ther broken down into subthemes. In addition, we used thematic analysis to analyze tran- scribed data (Shontz, 1985). Thematic analysis of the participant responses focused on the general agreement among participants in each group (e.g., was this attitude or belief held by other members in the same focus group?), consistency of findings across groups (e.g., was this attitude or belief also reported by participants in the study who were in different focus groups?), and concordance among the assessments of observers (e.g., was there agreement among observers about the attitude or belief being expressed?). Compiling numbers and percentages of participant responses is not appropriate for focus group research (Krueger & Casey, 2000). Instead phrases such as, “Several participants strongly agreed that . . .” or “The opinion was prevalent that . . .” were used to convey the level of agreement with a statement or attitude (Krueger & Casey, 2000).

Literature reviews, investigators’ a priori understandings, the moderators’ guide, and the qualitative text itself informed the process of the thematic identification. Two inde- pendent raters reviewed the transcripts for response to key study themes and the con- sistency of responses among participants and across groups. Examining the pattern of responses across groups is important in determining the level of agreement with atti- tudes and beliefs. For example, consistency in responses suggests that an attitude may be more similarly experienced by the focus group participants and not simply an idio- syncratic viewpoint or, alternatively, whether a concept should be explored in greater depth. Coding categories were then used to summarize key ideas in the combined focus groups as described by Stewart and Shamdasani (1998). Final reported focus group findings were derived from the analysis of all focus groups collectively, although sub- themes that were not prevalent in all focus groups were identified. Given our interest in the overall attitudes and perceptions of the focus group participants, results were not reported separately by church.

Our initial coding was presented to the focus group moderator and the qualitative analysis team members (PI, and three key personnel on the study) for further discus- sion. Following the team members’ discussion and analysis, where appropriate, the ini- tially agreed on set of coding topics was expanded to capture new themes. This iterative process resulted in a thorough evaluation of the key topics on the moderators’ guide, assessment of common themes that were prevalent but not initially assessed as part of the moderators’ guide, and identification of subthemes that emerged after subsequent probing of key themes.

RESULTS

Key qualitative findings are described below and are organized according to our evaluation of the following broad categories associated with the REACH 2010 intervention: (a) role of the church in promoting health, (b) awareness of breast and cer- vical cancer activities at their church, (c) education/curriculum effectiveness, (d) facil- itators and barriers to cancer screening, and (e) recommendations for improving the

Matthews et al. / Faith-Based Cancer Screening Intervention 651

intervention program. Illustrative comments from focus group participants are included where appropriate.

Role of Church in Promoting Health

Effective development and promotion of faith-based health initiatives are predicated on attitudes and perceived relationships among religion, spirituality, and health. A number of themes emerged that provide support for the acceptability and appropriateness of faith- based initiatives focused on health outcomes among African American women. These include the relationship between religion and health, the role of religious leaders in health promotion, and the effectiveness of personal testimonials in cueing health behaviors.

Relationships Among Religion, Spirituality, and Health. Across each of the focus groups, members were consistent in their affirmation of the clear role of religion and the church in caring for the physical and spiritual health of the congregation. A range of issues associated with this relationship was discussed. The first was the view that good health is a gift from God. For example, several participants cited scripture pas- sages that they believe indicate God’s clear mandate for individuals to care for the body as a temple of Christ.

It [the bible] speaks of the body as a temple and caring for it and so that just gives us the instruction that it is our responsibility, our charge from the Almighty, to care for our bod- ies to the best of our ability.

Participants also cited the importance of spirituality, faith, and trust in God as a means of coping with problems, including health threats. Previous studies have described higher levels of religiosity and use of religious and spiritual coping strategies when comparing African Americans to other Western groups (Bourjolly, 1998; Koenig, 1998; Steffen, Hinderliter, Blumenthal, & Sherwood, 2001). Similar to these prior stud- ies, reliance on religious beliefs or spirituality was strongly endorsed as a coping strat- egy by group participants. Although some participants stressed the formal role of the church and religion in addressing problems, most participants focused on the more gen- eral role of faith and spirituality in maintaining health or recovering from an illness. For example, one participant described her confidence in the power of faith to protect her:

First of all, you can keep on praising God and not be scared because he is going to walk you through everything. So there is nothing to worry about.

The Role of Religious Leaders in Health Promotion. Related to the issue of man- dated responsibility for caring for the body was the presupposition that ministers are responsible for both the spiritual and physical health of the congregation. Focus group participants believed that a lack of health knowledge and awareness was a major factor contributing to the poor health of African American women. Because church ministers have a great deal of influence with congregation members, they are viewed as especially effective in setting a health-focused agenda for the church and in serving in the role of health educator and promoter for the church.

That’s what a pastor is supposed to do; look after the total. That’s how we were raised by our senior pastor, that we are concerned about the total man, the total everything.

652 Health Education & Behavior (October 2006)

They’ll hear it [health messages] from him and he has an effect on a lot of churches. One thing our pastor does is he pushes breast cancer 100% and he tells it to those who may not want to listen.

Although there was agreement regarding the role of the church and ministers in health promotion, a minority of participants had a different perspective. Some partici- pants believed that although recovery from an illness is often addressed in church, it is usually in the form of a personal testimony, and other aspects of health or health edu- cation are not routinely addressed.

You don’t usually do that [discuss health] unless someone is giving his or her testimony on “look what God has done for me.” You don’t hear that in church. You don’t get preven- tion and all that other stuff. Church is where you go to get better because the Lord is going to bless you but you usually don’t get this part.

Church Testimonials. Giving testimony is a long-standing African American church tradition whereby an individual will provide the congregation with an example of how he or she has been personally blessed by God. Testimonies given by church members that were focused on health had a tremendous impact on focus group respondents and reinforced the importance of getting a mammography or Pap test.

This last one [mammogram] I got when Ms. X stood up there and told us about herself [gave a testimony]. It really hit home. My friends and I still today pray for her and I say “let me go now.” It had been 6 years [since last mammogram] and when she stood there and talked to us about her situation, I made an appointment immediately.

In this remark, the participant makes a direct connection between a personal testi- mony given by a member of her church and her consequent arrangement of a mam- mography appointment. The testimony given by Ms. X provided a strong cue to action. In addition, personal testimonies given by women who identified themselves as breast cancer survivors had an impact on participants. As one participant described,

I think that one of the things that I was impacted by was when Ms. Y came to one of our sisterhood meetings. Just her testimony by itself made such a huge impact on me. Because otherwise, it was just a meeting . . . but when she said “breast cancer survivor” that really got my attention.

Awareness and Knowledge of Program

An initial step in assessing awareness of the Reach Out Breast and Cervical Cancer Education program was to ask women whether they had heard about the program at their church. The majority but not all of the focus groups participants were aware of the project and specific programming activities at their church. In terms of specific activities, each church was given flexibility in the identification and pursuit of activ- ities of greatest interest and potential utility to their congregations. The variable church-sponsored activities that were thought to be most effective in increasing awareness about breast and cervical cancer risk factors and screening recommenda- tions included pastor announcements, church bulletin notices, posted flyers, personal testimonials of church members, health fairs, and the presence of on-site mammo- graphy vans.

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The standard education sessions offered across all church sites were also viewed as informative. In particular, the focus on the educational sessions on risk factors for breast and cervical cancer made an impact on women, because many reported having no previous knowledge of these factors. Overall, the health information received from the combined intervention and church-sponsored activities was reported to have raised individual levels of awareness about breast and cervical cancer.

The responses of focus group participants indicated differences in participants’ awareness and involvement in cervical cancer education and screening activities com- pared with breast cancer activities. For example, few of the women in the focus groups could describe any of the cervical cancer education activities at their church. Additionally, few women reported attending any activities specifically geared toward increasing cervical cancer education and screening. Alternatively, most of the women in the groups were aware of or had personally attended a breast cancer educational activity. Attitudinal factors may have played an important role in reducing participation in cervical cancer education and screening activities. For example, social stigma was reported to be a barrier to attending the cervical cancer educational sessions or dis- cussing this aspect of health with other congregation members.

The reason that the women were not showing up [at the cervical cancer educational ses- sions] was because of the fact they figured that they would be stigmatized. They’ll think I got it. [Other women in the church ask] Who was at the meeting? That is what happens afterwards.

The young ones will not talk with you about it [abnormal Pap tests] or anything because of us [older women] to attach a stigma to them.

Education/Curriculum Effectiveness

Studies have identified sociocultural factors affecting cancer rates and outcomes among racial and ethnic minorities including knowledge of cancer risk and use of clin- ical screening and early detection services (National Cancer Institute Cancer Screening Consortium for Underserved Women, 1995). Given the well-documented knowledge deficits in the African American community in health education in general and cancer education in particular, the focus of the standard educational session was to target known informational deficits and to motivate screening behavior. For example, lack of knowledge and training in how to correctly conduct breast self-examinations is a fre- quently cited barrier to conducting this specific breast cancer early detection strategy (Fish & Wilkinson, 2003).

Women who attended the standard educational sessions positively evaluated the con- tent of the material presented. In particular, information about breast self-examinations was rated highly. The breast models and other visual and hands-on learning aids were mentioned as being effective teaching tools for reinforcing the activity of self-breast examinations. The lay health advocate’s and pastor’s role in providing the educational curriculum was also well received.

There are a lot of times we do not do enough self-examination of ourselves or we do not know how. . . . That is what impacted me the most is to examine ourselves and be sure to check and to have our breast mammogram. I have one once a year.

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I became aware of it though our pastor . . . we are able to pick up on a whole lot of things that we actually were not aware of and she [the advocate] was very informative.

Screening Behaviors

Screeners and nonscreeners in each group were queried to determine facilitators and barriers to early detection cancer screening.

Factors Promoting Screening. When asked about factors that prompted them to get regular breast screenings, participants commonly reported a history of a breast abnor- mality or breast cancer in their families. As noted in an earlier section, the church pas- tors played an important role in raising cancer awareness for first time screeners. In addition, pastors who provided encouragement to their female members to get mam- mograms seemed to be effective in motivating screening initiation or adherence. Personal testimonies at program-related activities motivated several participants to get screened for the first time and/or to continue with regular screening. Lay health advo- cates who formed personal relationships with the women in the church were also seen as providing an important role in promoting screening.

The [lay church advocate] was really on it because a lot of times I had it in the back of my mind to really get one [mammogram] but I had not had one in 4 or 5 years—she came up to me and said did you have one and stayed on my case. I ended up going and like I said I recently had my mammogram.

Barriers to Screening. Nonscreeners typically cited one of four primary barriers to regular cancer screening: lack of awareness, fear of cancer, too few cues to action (e.g., forgetting), and negative experiences with the screening process. In terms of negative experiences, nonscreeners perceived mammograms as being more painful compared with screeners. One woman describes,

A lot of our people [African Americans] will say “I am not having a mammogram because it hurts.” I try to encourage people and say I have never had one that hurts. It is the tech- nician. A lot of us do not get those exams because we have heard a lot of people say it hurts and I am not going to do that.

I think one main reason is people are afraid. Even though you know it’s good for you, you are afraid that if you have the test done they will find something you are not ready to face.

Social stigma was revealed as an unanticipated barrier to screening. Specifically, the perceived association with promiscuity and cervical cancer was noted to be a major bar- rier to Pap screening. For example, participants noted that the possibility of getting a positive result on a Pap test led to negative feelings such as shame attributable to the link between cervical cancer and promiscuous sexual behaviors. Furthermore, women in the focus groups suggested that the association between cervical cancer and promis- cuity contributes to women failing to disclose abnormal lab results to support networks, such as family and friends. Finally, older women in the group acknowledged that they were aware of women who have not received adequate support when diagnosed with cervical cancer because of stigma.

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A lot of people [who] think they may have it think there is a stigma with it. You know there is just a stigma to the thing that might be connected sexually with transmitted diseases and people tend to draw away from that. People think you are being promiscuous.

If you tell me that this is 90% a sexually transmitted disease then it’s just like people with HIV and AIDS. They [women with abnormal tests] don’t want to come out and say it until they have no choice. It’s not something that you feel comfortable talking about.

Improving the Process

Women reported several methods that may be effective in educating and motivating women who do not participate regularly in breast or cervical cancer screening. The first recommendation was to continue the on-site educational sessions and to conduct them more frequently. The participants believed that the continuity of faith-based activities would ensure that the women in the congregations would eventually hear the message and become more motivated to obtain early detection screening.

My pastor said to us that the reason why he says things over and over because we are not getting it. You got to keep putting it out there [early detection messages]. Someone is going to get it and then when somebody else gets it they are going to tell somebody and it becomes contagious once you start telling it.

A second recommendation aimed at promoting screening activities was to increase the use of personal testimonies in the education and awareness sessions. Incorporating the personal testimonies of cancer survivors was thought to increase awareness and interest in cancer screening because of two valued practices in the African American community—the religious and cultural practice of “giving testimony” and the cultural value of honoring “lived experience” over the opinion of experts.

A third recommendation was to increase the availability and dissemination of writ- ten materials aimed at basic cancer education and providing specific information about screening referrals. Suggestions for dissemination of written materials included posting flyers, placing notices on church bulletin boards, and including a health awareness sec- tion in the church bulletins and newsletters. Continuing to provide on-site mammogra- phy vans was also viewed as an important method for reducing barriers associated with seeking and obtaining referrals for screening.

When I found out we were having a mobile van I was so impressed. I was so happy because I know that there are women that never have gone [for screening].

A fourth recommendation was to increase the use of targeted health education and outreach via written educational formats. Targeted messages were thought to be a means for increasing health information in harder to reach subgroups within the church. For example, targeted messages were viewed as being of particular importance in reaching younger and older church members.

Finally, the development of church health ministries was viewed as an important strategy not only for increasing cancer knowledge and screening but also for address- ing the range of health threats facing the African American community. The strength of this recommendation was corroborated by the observation of the evaluation team. Specifically, those churches with a health education infrastructure already in place were best able to take maximum advantage of the REACH 2010 breast and cervical cancer

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education program. Several churches have begun plans to establish a health ministry as a direct result of the program intervention.

No [we don’t have a health ministry]. . . . We are in the process right now of developing that yes. We have that on our outreach plan and we have already networked with a nurse’s organization to house that here.

DISCUSSION

The objective of this study was to qualitatively explore the attitudes, beliefs, and behaviors associated with breast and cervical cancer screening among African American women in a faith-based study. A number of important themes emerged from the qualita- tive data that have implications for the improvement and delivery of faith-based health promotion interventions for African Americans (see Table 3). First, physical health was viewed as an appropriate topic to be addressed within the context of faith-communities. In this regard, there was a strong dynamic between the general role of faith and spiritu- ality and the more formal role of religion and the church. Consequently, both spiritual- ity and religion should be considered when establishing project parameters. For example, biblical passes relating to trust and faith in God as a spiritual protector can be incorporated into messages aimed at reducing stress and enhancing coping with cancer screening procedures. In addition, biblical scripture making specific references to caring for the “body as a temple of Christ” can be incorporated into health promotion messages as religious cues to action. Furthermore, the attitude and behavior of pastors, including the content of weekly sermons, can be highly effective in enhancing health education and establishing a health-focused agenda for a congregation.

Faith-based interventions can also be enhanced when interventionists adopt practices naturally occurring in the church environment to deliver and/or reinforce program spe- cific goals. For example, giving personal testimonials is a long-standing tradition in many African American churches. Study findings suggest that the personal testimonies given by church members had a solid impact on the focus group respondents and were instrumental in reinforcing program goals of increasing cancer-screening behaviors. Personal testimonies may be effective as an intervention strategy for several reasons. First, providing testimony is highly consistent with the oral tradition of African Americans, that is, engaging in a verbal exchange of information whereby the infor- mation provided is often acquired from lived experience. Second, focus group partici- pants revealed very empathetic reactions to personal testimonies. Among focus group participants, the ability to “relate” to the personal experience of a fellow congregation member served as a strong cue to action. Although not specifically discussed by focus group participants, personal testimonies may also dispel the prevailing belief that screening procedures are always painful or that cancer is an automatic death sentence.

Focus group data also indicate that faith-based health interventions in the African American community must address barriers to screening. Multiple levels of barriers need to be targeted including those generic to women in general (e.g., fear or lack of access), barriers specific to African American women (e.g., mistrust of the medical sys- tem), and barriers that may be more prevalent among women in faith communities (e.g., stigma associated with specific medical conditions or health risks). For example, two focus group studies with African Americans suggested the continued presence of social stigma associated with cancer in the African American community (Matthews et al., 2000; Matthews, Sellergren, Manfredi, & William, 2002). In these studies, stigma was

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Table 3. Summary of Key Qualitative Findings

Topic Subheader Qualitative Findings Implications

Role of church in health • Church seen as an appropriate • Faith-based interventions promotion context for health are acceptable to faith

information. communities. • Spirituality and religion both • Incorporating aspects of

play a role in health. spirituality and religion • Ministers influence their may enhance health

congregation’s attitudes about promotion messages. health and behavior. • Ministers can be

important spokespersons for change.

Awareness and • Educational sessions and • Strategies useful in knowledge church activities were useful increasing awareness of programs in increasing awareness about included pastor

breast and cervical cancer. announcements, church • Personal testimonies are an bulletin notices, and

effective cue to action. flyers. • Immediate access to screening • Interventions should

increases participation. adopt naturally occurring church practices such as testimonies.

• Mammography vans were effective.

Education/curriculum • Education session and church • Multilevel interventions effectiveness activities both reinforced are effective.

early detection. • Lay health advocates are • Hearing risk factors from effective educators.

African American women • Visual aids/breast models helped to change attitudes. are effective learning

• Knowledge of breast self- tools. exams was improved with hands-on education.

Screening behaviors • REACH program motivated • Findings support role of women to get screened for the faith-based interventions first time. in health behavior

• More women get regular Pap change. tests than mammograms. • Additional research

• Regular screeners have is needed to identify positive attitudes about and address barriers screening and fewer barriers. to screening.

• Social stigma may be a barrier • Interventions must to screening. address generic barriers,

cultural barriers, and barriers unique to faith communities.

(continued)

largely associated with the presumption of cancer as contagious, as a death sentence or, at a minimum, as a highly debilitating disease.

Within faith communities, social stigma may be further heightened for those cancers perceived to be linked with sexuality or immoral behavior. For example, focus group participants reported that stigma associated with cervical cancer is prevalent and has been exacerbated by the recent discovery of the role of sexually transmitted infections (human papillomavirus) in the etiology of cervical cancer (e.g., Bosch et al., 1995; Walboomers et al., 1999). These data suggest that a possible unintended consequence of the public health initiatives aimed at raising awareness of the link between sexual activity and cervical cancer has been an increase in the level of stigma associated with the disease for some segments of the African American community.

The association between cervical cancer and promiscuous sexual behavior may pose unique obstacles for increasing cervical cancer education and screening within faith com- munities. To facilitate acceptance of program goals, research personnel must be particu- larly sensitive in how they address health issues believed to be associated with immoral or stigmatized behaviors. For example, addressing the health consequences of specific lifestyle practices should not be viewed as conveying tacit approval of any behavior viewed as inconsistent with church teachings. Instead, an approach can be adopted whereby church doctrine and health promotion can be simultaneously supported.

Public awareness and education about the effectiveness and availability of breast and cervical cancer screening services are important components in reducing disparities. Lay health advocates who were selected by their pastors and who were members of the congregation were viewed as particularly effective in delivering education, motivating screening behaviors, and providing supportive encouragement for health promotion. Strategies used by lay church advocates that were viewed as effective in increasing awareness and health education included incorporating health messages into church bulletins, displaying information in the church setting, providing visual and hands-on learning aids, and providing written materials that explicitly advertised the availability of free screening services. Previous studies have demonstrated the effectiveness of using lay health educators in community-based cancer prevention programs for African American women (Erwin, Spatz, Stotts, & Hollenberg, 1999). Identifying and training lay health advocates directly from the congregations of participating churches may increase the credibility of the educator because of the presumed congruency of the educator’s religious belief systems with those of the religious institution.

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Table 3. (continued)

Topic Subheader Qualitative Findings Implications

Improving the process • Continuity of education • Community partners and sessions at churches program participants can requested. play an important role in

• Senior and youth outreach developing and refining efforts are needed. interventions.

• Development of health ministers at churches will help sustain efforts.

NOTE: REACH = Racial and Ethnic Approaches to Community Health.

Study Limitations

Focus group methodology is an acceptable and effective method to obtain informa- tion from racially and ethnically diverse populations. Because the evaluation team is primarily interested in participants’ subjective experiences with breast and cervical can- cer education and screening, focus groups allow for open-ended discussion and per- sonal expression. Limitations arise because these focus groups were conducted from an exploratory standpoint and because demographic data were not collected on focus group participants. Future studies should be conducted to determine how these findings generalize to larger more representative samples of African American women.

Implications

Church-based interventions inherently capitalize on the qualitative; linking personal faith and health is often subjective in nature. As such, qualitative methods, specifically focus group strategies, are a promising research methodology for developing and refin- ing faith-based cancer projects for ethnic and racial minority women. Tailoring educa- tional and intervention programs to targeted populations can increase the effectiveness of health programming (Kreuter, Strecher, & Glasman, 1999). However, systematic evaluation of faith-based interventions is needed to improve program design and imple- mentation and to refine programs to meet the needs of different populations (DiIorio et al., 2002). Results from the current study provide a solid starting point for assisting health educators interested in establishing faith-based health promotion interventions for African American women. Key findings include the importance of the role of the pastor, the effectiveness of personal testimonies, the effectiveness of lay health advo- cates, the saliency of biblical scripture in reinforcing health messages, the effectiveness of multimodal learning aids, and the relationship between stigma and cervical cancer.

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