Abstract
The Hawai’i Breast and Cervical Cancer Control Program (BCCCP) offers free mammograms and Pap smears to women who are uninsured or underinsured through a statewide provider network. Native Hawaiians, Pacific Islanders and Filipinas are priority populations for this program, and BCCCP providers are required through contract with the Hawaii Department of Health to utilize half of their allotted mammograms and Pap smears for eligible women from these groups. To identify strategies for increasing use by these groups of mammography and Pap smear screening services through BCCCP, we held focus groups with women who could potentially use BCCCP services, and we conducted key informant interviews with 9 of Hawai’i’s 11 BCCCP providers and 9 non-BCCCP outreach workers serving these populations. Findings led to recommendations for promoting awareness of BCCCP and enhancing outreach to Native Hawaiian, Pacific Islander and Filipina communities in Hawai’i.
Keywords: BCCCP, CDC, community outreach, health disparities, health services administration, mammography, minority health, prevention and control
Introduction
Filipina, Hawaiian, and other Pacific Islander women experience breast health disparities,1,2 As shown in Table 1, women in these groups are less likely than Caucasian and Japanese women to participate in cancer breast and cervical cancer screening.3 They also are more likely than Caucasian and Japanese women to be diagnosed at a later stage of the diseases, when chances for cure are compromised. Specifically, 35.4% of Native Hawaiian women and 34.9% of Filipino women with breast cancer are diagnosed with late-stage disease, compared to 29.4% of Caucasian and 22.4% of Japanese women with breast cancer.1,4 Among women with cervical cancer, 41.2% of Native Hawaiians and 61.0% of Filipinas are diagnosed at a late stage, compared to 34.1% of Caucasians and 29.5% or Japanese. 1
Table 1.
Hawai’i State Breast and Cervical Cancer Screening Prevalence 2005 – 2007
| Year and Ethnicity | % age 40+ who ever had mammogram | % age 40+ who had mammogram in past 2 years | % age 18+ who ever had Pap | % age 18+ who had Pap in past 2 years |
|---|---|---|---|---|
|
| ||||
| 2005 | ||||
| Hawaiian | 86.6 | 66.0 | 91.7 | 76.9 |
| Filipino | 84.9 | 72.2 | 85.9 | 80.1 |
| Caucasian | 91.7 | 75.9 | 96.2 | 86.6 |
| Japanese | 93.5 | 83.9 | 90.1 | 83.9 |
|
| ||||
| 2006 | ||||
| Hawaiian | 88.2 | 70.3 | 92.9 | 81.9 |
| Filipino | 88.1 | 73.7 | 84.5 | 78.4 |
| Caucasian | 93.1 | 75.7 | 94.5 | 81.4 |
| Japanese | 94.9 | 81.1 | 92.5 | 82.2 |
|
| ||||
| 2007 | ||||
| Hawaiian | 91.8 | 76.1 | 94.5 | 81.9 |
| Filipino | 90.9 | 74.0 | 93.6 | 82.7 |
| Caucasian | 93.1 | 76.0 | 96.9 | 83.1 |
| Japanese | 94.5 | 78.6 | 94.3 | 81.3 |
Most of the Pacific Islander immigrants to Hawai’i are from the American Samoa, the Republic of the Marshall Islands (RMI), and the Federated States of Micronesia (FSM), which is comprised of 4 states—Chuuk, Kosrae, Pohnpei, and Yap. Each Pacific Island group has its own distinct culture and language, but they share a history of colonization by various European nations, Japan (in the RMI and FSM), and the United States (US). Since World War II, these islands have been used by the US for military, and the RMI was used for nuclear weapons testing.5 Because the numbers of Hawai’i residents from these Pacific Islands are relatively small, estimates of cancer mortality and screening behaviors are not available for each specific group. However, a chart review conducted by a Community Health Center frequented by women from the RMI and FSM found that 74% of female patients over the age of 40 had never had a mammogram, even through 65% had medical insurance. 6 Surveillance data gathered in the late 1990s from Samoan women in Hawai’i and Los Angeles suggested that only 33% of US-residing Samoan women over the age of 40 had ever had a mammogram and only 64% of Samoan women over the age of 18 had ever had a Pap smear.7,8 At the time, these rates were among the lowest reported for any ethnic group in the US.
Breast and cervical cancer screenings are effective secondary prevention strategies for reducing the cancer morbidity and mortality. To provide these services for medically underserved, low-income women, the Centers for Disease Control and Prevention (CDC) established the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which covers breast and cervical cancer screening and diagnostic follow-up.9 US states, territories (eg, American Samoa), and freely associated states (eg, the RMI, and the FSM) may apply for CDC funding to establish a program in their communities. 9 The Hawai‘i Breast and Cervical Cancer Control Program (BCCCP) program was established in 1993, and began targeting its services to medically underserved women in 1997. Currently, the Hawai’i Department of Health (DOH) administers the program, contracting with 11 BCCCP providers across the state. DOH mandates that at least 50% of mammograms and Pap smears provided under BCCCP be for clients from 3 priority populations—Filipinas, Native Hawaiians, and other Asian/Pacific Islander (API)—which in the Hawai’i BCCCP definition excludes Chinese and Japanese.
Between Fiscal Years (FY) 2002 and 2007, 6,884 women received a screening mammogram through the Hawai’i BCCCP, and 50% (3473) of these women were Native Hawaiian, Filipina, or other API. In FY 2007, for example, about 14% of BCCCP clients were Native Hawaiian, 19% were Filipina, and 19% were Other Asian/Pacific Islander. However, when data were examined by county, only 38% of Maui participants, 27% of Kaua‘i participants, and 21% of Hawai’i participants were members of these priority groups in FY 2007, compared to 72% of clients in Honolulu County. Also, some BCCCP providers had trouble using their priority population allotment (50% of their mammograms) for the year. In FY 2007, for example, only 1,073 (82%) of the 1,305 budgeted mammograms for the state were completed, and 553 (52%) of completed mammograms were provided to women from the priority populations.10
To identify strategies for increasing use of BCCCP services by these groups, an assessment was conducted by ‘Imi Hale Native Hawaiian Cancer Network (‘Imi Hale) through a subcontract with the Hawai’i DOH. ‘Imi Hale is a program of Papa Ola Lōkahi and one of 25 Community Network Programs funded by the National Cancer Institute’s Center to Reduce Cancer Health Disparities. ‘Imi Hale was founded in 2000 and is guided by principles of community-based participatory research, emphasizing community involvement, capacity building, respect for cultural values, and the sharing of information.11–12 The DOH and ‘Imi Hale have a history of collaboration on community-based projects related to tobacco cessation, diet, and exercise, as well as BCCCP. Prior to this study, ‘Imi Hale and the DOH co-sponsored 2 meetings in 2003 and 2007 to foster relationships between community outreach staff serving Native Hawaiians and BCCCP provider staff and to identify barriers to participating in the BCCCP. 10
The specific goal of this assessment was to examine outreach and recruitment barriers to expanding BCCCP participation by Native Hawaiian, Filipina and other API women and to identify strategies that could potentially increase participation, especially on the Neighbor Islands.
Method
In this qualitative study, we conducted focus groups with potential users of BCCCP services from Filipina, Hawaiian, and other API communities. We also conducted key informant interviews with BCCCP providers and with non-BCCCP community outreach workers serving these priority populations. Data were collected by ‘Imi Hale to identify common and ethnically unique barriers to service use, as well as successful recruitment strategies that could be applied across the state. Findings were reviewed and recommendations developed with DOH BCCCP staff.
Focus Groups
To hear from potential BCCCP clients, 5 focus groups were conducted: 2 with Native Hawaiian women, one with Filipino women, one with Marshallese women, and one with Chuukese women. We focused on Marshallese and Chuukese because these groups are among the largest from the Western Pacific, and a large percent of them do not speak English. Participants were identified by community outreach staff, community leaders, and advocates for these ethnic groups. An effort was made to enlist women who were eligible for BCCCP services but had not used the program ever or at least within the past 2 years. In all, 42 women were identified and invited to participate, and 33 did so. Those that did not attend cited prior commitments or last-minute illness or time conflicts. Participants’ ages ranged from 42 to 69 years; 15 were Native Hawaiian, 6 Filipina, 7 Chuukese, and 5 Marshallese. None had health insurance, qualifying them for BCCCP benefits.
Focus group size ranged from 5 to 8 women. Questions included: 1) What have you heard about breast cancer, cervical cancer, mammography, Pap tests, and BCCCP? 2) What are some barriers to getting screened for breast and cervical cancer? 3) Where do you usually get health information or advice? and 4) What can BCCCP do to promote its services? The Chuukese group was conducted in Chuukese, Marshallese group in Marshallese, the Filipina group in Ilocano, one Hawaiian group in Hawaiian and one Hawaiian group in English. Translators were selected for their language skills and their status within the group, and all translators except the one for the Hawaiian-language group were elders. Conducting the focus groups in the native language with a trusted translator helped build trust and reduce the chances of misinterpreted and misleading responses. Because of our commitment to increasing community capacity, we trained 14 health workers to conduct the focus groups, and each attended 3 hours of training. Tailored focus group guides and scripts were developed by ‘Imi Hale and used by each group. Informed consent was obtained from each participant. In appreciation for their time, participants received a $10 gift certificate.
Focus group discussions were audio-taped with participants’ permission. Key ideas also were recorded on paper posted on the wall for all to review, and participants were free to offer corrections to this record. Focus group discussions were subsequently transcribed in English. The trained health workers and the investigators worked together to identify the key themes and to code the transcripts. We counted the number of individuals in each group that spoke to each theme.
Key Informant Interviews
BCCCP Providers
We interviewed representatives from 9 of the 11 BCCCP providers: 4 on O‘ahu, 2 on Hawai’i (island), and one each on Maui, Moloka‘i, and Lāna‘i. Two of the 11 BCCCP providers were not included in the study because they were newly contracted and had been in operation less than a year. Key informants had been working with members of the priority populations from 3 to 14 years and with the BCCCP program from 1 to 10 years. Interviews were conducted by phone and took about 45 minutes. Prior to the scheduled interview, respondents were sent materials to review, including a list of recommendations generated at a previous DOH BCCCP provider meeting and a copy of the questions to be covered on the interview. The survey questions were developed by ‘Imi Hale staff and reviewed and approved by the DOH. Participants were asked to describe the strategies they used to recruit Filipina, Hawaiians, and Pacific Islander women to their sites. Interview notes were transcribed. They also were asked to review a list of 10 recruitment strategies identified at a previous DOH BCCCP provider meeting and score each one on a scale from 1=not important to 10=very important. Scores were averaged across participants. In appreciation for their time, participants received a $25 gift certificate.
Non-BCCCP Outreach Workers
We interviewed 9 female community outreach workers, selected because of their role in community outreach with Filipina, Hawaiian, and other Pacific Islander groups. Specifically, we interviewed 2 Marshallese and 3 Chuukese lay educators affiliated with Micronesian United’s Breast Cancer Lay Education program and 2 outreach workers with the Native Hawaiian Health Care Systems—one on Kaua’i and one on Maui. Also on Kaua‘i, we interviewed 2 lay educators from Kauai Diabetes Today who worked with Filipinas. Three questions were asked: 1) What are the barriers to reaching BCCCP-qualified women in your community? 2) What are the community strengths that help you reach BCCCP-qualified women in your community? and, 3) If you had adequate resources, how would you reach BCCCP-qualified women in your community?
Interviews were conducted by phone and in English, and each interview took 2 to 3 hours to complete. In appreciation for their time, participants received a $25 gift certificate. Interview notes were transcribed, and the investigators identified key themes and coded the transcripts.
Findings
Focus Group Findings
Knowledge and Practice
Overall, the 33 focus group participants had heard of breast and cervical cancer, 79% knew about Pap testing, and 55% knew about mammography (Table 2). Although 24 (73%) reported ever having a Pap test, only 14 (42%) reported ever having had a mammogram (Table 2). Looking by ethnic group, none of the Chuukese or Marshallese participants had ever had a mammogram, compared to 50% of Filipina participants and 73% of Hawaiian participants. Although the number that had received Pap testing was relatively high, we learned that the Chuukese and Marshallese only had Pap testing done when they were pregnant, rather than routinely. Eight women had used BCCCP for breast cancer screening, and 4 more had heard of the program, but none of the Chuukese and Marshallese participants had used it or heard of it.
Table 2.
Number of focus group participants that spoke to each theme
| Filipina (n=6) | Hawaiian (n=15) | Chuukese/ Marshallese (n=12) | Total (n=33) | |
|---|---|---|---|---|
|
| ||||
| Knowledge | ||||
| Heard of breast and cervical cancer | 6 (100%) | 15 (100%) | 12 (100%) | 33 (100%) |
| Know about Pap testing | 5 (83%) | 15 (100%) | 6 (50%) | 26 (79%) |
| Know about mammography | 4 (67%) | 13 (87%) | 1 (8%) | 18 (55%) |
| Had Pap test | 4 (67%) | 14 (93%) | 6 (50%) | 24 (73%) |
| Ever had mammogram | 3 (100%) | 11 (73%) | 0 | 14 (42%) |
| Heard of BCCCP | 4 (67%) | 8 (53%) | 0 | 12 (37%) |
|
| ||||
| Barriers to Screening | ||||
| Limited understanding of screening | 5 (85%) | 15 (100%) | 11 (92%) | 31 (94%) |
| Competing priorities | 6 (100%) | 8 (53%) | 7 (58%) | 21 (64%) |
| Lack of transportation | 6 (100%) | 13 (80%) | 0 | 19 (58%) |
| Cultural beliefs that impact health seeking | 0 | 10(67%) | 9 (75%) | 19 (58%) |
| Fear of bad news | 2 (33%) | 4 (27% ) | 0 | 6 (18%) |
|
| ||||
| Sources of Information | ||||
| Family or community gathering | 5 (83%) | 12 (67%) | 7 (58%) | 24 (73%) |
| Trusted and respected leaders and relatives | 6 (100%) | 7 (47%) | 12 (100%) | 25 (76%) |
| Church | 5 (83%) | 5 (33%) | 4 (33%) | 14 (42%) |
| Television | 6 (100%) | 8 (53%) | 0 | 14 (42%) |
| Radio | 3 (50%) | 8 (53%) | 2 (17%) | 13 (40%) |
| Print media | 4 (67%) | 2 (13%) | 1 (8%) | 7 (21%) |
| Health care providers | 3 (50%) | 6 (40%) | 2 (17%) | 11 (33%) |
|
| ||||
| Suggestions for Outreach | ||||
| One-on-one outreach | 6 (100%) | 14 (93%) | 12 (100%) | 32 (97%) |
| Community or church presentation | 6 (100%) | 10 (67%) | 12 (100%) | 28 (85%) |
| Special campaign or project | 5 (83%) | 13 (80%) | 3 (25%) | 21 (64%) |
| Media campaign on television and radio | 5 (83%) | 4 (27%) | 9 (75%) | 18 (55%) |
| Targeted health education materials | 3 (50%) | 9 (60%) | 8 (67%) | 12 (37%) |
| Health fairs | 2 (33%) | 7 (47%) | 0 | 9 (27%) |
| Health providers | 0 | 0 | 1 (8%) | 1 (3%) |
Barriers to Screening
Focus groups identified 5 common barriers across the groups: 1) limited understanding of breast and cervical cancer; 2) competing priorities; 3) lack of transportation; 4) cultural beliefs that impact health seeking behaviors; and 5) fear of bad news. Although all women had heard of breast and cervical cancer, 94% did not feel they had enough information about cancer, about the need for screening, the recommended frequency of screening, and how to go about getting it, especially since none had insurance and only 11 (33%) had a regular source of care (Primary Care Provider or clinic). Competing priorities were identified by 64% of the participants, and the most common was the need to care for grandchildren, ailing relatives, and parents. Others mentioned the need to work 2 or more jobs to make ends meet in Hawai’i, and others noted competing church, social and cultural obligations. Transportation issues were raised, especially among the Neighbor Island participants. Many told of difficulties getting to appointments on islands with limited or no bus service. Taking a taxi is very expensive, and many were reluctant to ask neighbors and relatives for help.
The Hawaiian, Chuukese, and Marshallese focus groups discussed the affects of culture on their health-seeking behavior. One suggested that information is shared differently in their traditional cultures:
“The western medical/public health system relies heavily on mass distribution of information. They announce programs and give phone numbers for us to call to get information about services. We do not respond to that type of call to action because in our culture we don’t do “cold calls.” If we don’t know a warm body on the other end, we don’t do it. Health information needs to be personal, and the messenger is just as important as the message.”
Participants also explained that their traditional cultures were more group-oriented than Western culture. Thus, women were more likely to seek help if they were motivated by family or church, especially if they could seek help in a group. Another participant explained why Pacific Islanders usually do better when they bring advocates with them to appointments.
“In the Micronesian culture it is not appropriate for a person to advocate for themselves. You need someone to be your advocate regardless of whether or not you are competent in the English language.”
In the Filipina and Hawaiian focus groups, participants spoke specifically about the fear of getting bad news as a barrier to screening. Other participants nodded when one woman remarked,
“I did not want to go in is because I am afraid that they will find something wrong, and then who will to take care of my family? My family doesn’t have the money to pay for treatment and I heard it’s very expensive and I know my family will suffer financially. Besides that, I am the caretaker for my family, and they rely heavily on me.”
Sources of Health Information
Seven sources were discussed. All 5 focus groups mentioned that they got health information from family and community gatherings they attended. One participant said,
“I attend at a lot of meeting throughout the week. Last week was a great example, Monday was my granddaughter’s open house at school, and after that there was the Parents and Teacher’s Association meeting with a presentation on nutrition. On Tuesday I attended a meeting for farmers about water rights, Wednesday was my Filipino association meeting, and I’m the secretary so I have to attend that meeting. Thursday was my ballroom dancing club meeting, and on Friday my sewing club had a birthday dinner for one our members.”
Other participants echoed this, adding that they attended housing meetings; family meetings to plan reunions, weddings, and funerals; and meetings of various boards, ethnic clubs, social clubs, and recreation clubs. We asked about the type of health information they receive at gatherings, and learned that it varied from passing mentions about a relative or friend diagnosed with an illness to a full presentation on a health issue by an outside speaker.
Three-quarters of participants also noted receiving health information from trusted and respected leaders, including pastors, civic and social leaders, family, friends, and neighbors.
Another source of health information mentioned by all 5 groups was church. This includes the regular Sunday service and church-related meetings held throughout the week, like church leadership meetings, choir practice, women’s meetings, and bible studies. Again, the type of information received varied from discussions about a congregant’s diagnosis to presentations by visiting health care providers.
Focus group participants on Kaua’i and the Big Island said they got information from television. The Filipina group said that they preferred watching Filipino programs (mostly in Ilocano or Tagalog), while the Hawaiian group watched mainstream television. The Marshallese and Filipina groups reported listening to ethnic-language radio stations, which sometimes broadcast health information. Filipinas also reported getting health information from Filipino-language newspapers, newsletters, or magazines. Midweek, a weekly newspaper, was mentioned by O’ahu participants. Three of the groups mentioned health care settings as a source of health information. This included reading a poster at a provider’s office, receiving health education materials (flyers and brochures), and having one-on-one talks with providers.
Promoting BCCCP
Focus group participants had several suggestions for promoting BCCCP services among their peers. All but one woman said that one-on-one education was the most effective means of outreach. One participant explained the various roles that this outreach worker would play:
“The ideal outreach program for my community is to have health outreach educators who are also encouragers. They would come out to the various housing projects and neighborhoods to tell us about health issues and screening. These health outreach educators can also serve as the navigator to navigate us through the system; they would do everything from calling in for appointment to escorting us to the doctor’s office. And finally, they would also be our translator, to translate difficult medical terms to us and also help us articulate our needs and concerns. This seems like a massive and costly undertaking but it can be done. We can train our own people to do it. ‘Imi Hale is doing a similar project with Micronesians United and it is very effective.”
The second most popular suggestion was to provide presentations in community or church settings, especially if the presenter is from the same ethnic group and speaks the same language. When this is not possible, presenters should use plain English; for Filipino, Chuukese, and Marshallese groups, non-native speakers should be assisted by a translator. A Micronesian participant explained the appeal of presentations:
“Presentations are culturally appropriate for Micronesians. It is, was and still is our mass media. For example, back in the islands, we used to have a meeting that takes hours where people listen to presentations and discuss everything. We are still wired up like that, and that is why we need to initiate a health program like that.”
Each ethnic group gave ideas for tailoring outreach to its community. The Micronesian women thought that hosting a competition between groups might motivate then to get screening. The Filipino groups suggested attaching screening to a fun, festive activity, for example hosting a ballroom dancing bash open only to women who were screened in the previous year. Hawaiians suggested targeting family reunions.
About half of the women recommended a mass media campaign using television and radio. While Hawaiians recommended a campaign in mainstream media, Marshallese and Filipino asked for health programming on ethnic radio. One participant explained,
“Health is not necessarily a top priority for the ethnic stations but it can be. If the public suggests or demands more health programming I am sure they will do it. They will be more than willing to air health messages as long someone else prepares the scripts ahead of time.”
Ethnic-language educational materials were important to the Filipina, Marshallese, and Chuukese women.
“We all know the importance of one-on-one and group sessions but we can’t remember everything and we need to have reminders in between sessions and that is where educational materials come in. The materials need to be in our language and show familiar faces from our community to be effective.”
The women also suggested reminder posters to be posted in church halls, ethnic stores, community bulletin boards and meeting places.
Getting the message out through health fairs at the mall, Costco, or Kmart was recommended by the 3 Neighbor Islands focus groups. They explained that health fairs were well attended on their islands. Only one participant mentioned health care providers, saying that they should be educated about BCCCP and the importance of referring women to the program.
Interview with BCCCP Providers
Interviews were conducted with 9 of 11 BCCCP providers. There was great diversity among providers, from hospitals to clinics to access-oriented programs. Each provider has different strengths and capacities to facilitate recruitment. For example, the NHHCS are largely staffed by community outreach workers, and their programs target Native Hawaiian women on their respective island. They do not, however, offer mammograms onsite. One has the capacity to provide transportation to clients, which greatly facilitates screening compliance, but the other NHHCS provider does not. Most of the hospital-based BCCCP providers have the capacity to do mammograms onsite, but most do not have community outreach workers on staff, and outreach is confined to media messages. Only one of the hospitals provides van services to clients needing transportation. While BCCCP providers serve all eligible women, many providers actually serve clients from the priority group in their catchment area or identified in their mission.
In our interviews, providers described an array of strategies that they had found successful. To increase access to screening, one BCCCP provider books appointments while conducting outreach at health fairs and community presentations. She does this by setting aside “blocks” of appointment times before she goes out. At the health fair or presentation, she can assess eligibility of women and schedule appointments on the spot. This also allows her to accommodate friends in adjoining time slots, recognizing their comfort in doing things together. This provider is able to arrange all services in one place, from registration to clinical exam, education, and mammogram. Women are encouraged to bring family members with them, and in some cases babysitting is provided onsite. Finally, women and their families are offered a tour of the facility to increase familiarity with the Western health care system.
Some providers offer night and Saturday clinic hours. Several BCCCP providers outreach through existing social and church groups, providing education and encouraging screening participation and several encourage clients to refer their friends. Some programs provide incentives, for example a bag of rice to each woman who shows proof of mammogram. Some spend time educating physicians and health agencies about BCCCP to increase referrals from these sources.
BCCCP providers rated 10 strategies to increase recruitment that emerged from a previous provider meeting (Table 3). They believed that the most important strategies (scoring 8.5–9.4 out of 10 where 10 = very important) were to increase outreach efforts, either their own outreach or through the use of lay educators, to increase participant incentives, and to educate agencies that work with vulnerable groups about BCCCP. The next most important (scoring 7.2–7.8 out of 10) were to increase the number of BCCCP mammograms that can be provided to women ages 40–50 (at this time, only 25% can be used for this age group), to increase transportation support, to educate physicians about the BCCCP, and to advertise using ethnic-preferred media. Providers felt the least important (scoring 6.6–6.9 out of 10) were advertising through mainstream mass media and increasing available appointments.
Table 3.
Recruitment Strategies Ranked by BCCCP Providers
| Recruitment strategies | Mean score* |
|---|---|
|
| |
| Increase outreach efforts | 9.4 |
| Increase participant incentives | 8.9 |
| Support lay educators to outreach to their own communities | 8.6 |
| Educate agencies to encourage referrals | 8.5 |
| Increase mammograms for the 40 – 50 year olds | 7.8 |
| Increase transportation support | 7.6 |
| Educate physicians to encourage referrals | 7.3 |
| Advertise using ethnic media | 7.2 |
| Advertise using mainstream, mass media (TV, Radio) | 6.9 |
| Increase appointment times and slots | 6.6 |
From 1=least important to 10=most important
Interviews with non-BCCCP Outreach Staff
Informant interviews were conducted on 3 islands with 9 community outreach staff working with Native Hawaiian, Filipina or Micronesian women. Their insights confirmed and extended the information heard in the focus groups. Salient barriers, strengths, and outreach suggestions are presented for each group.
Filipina Women
Most Filipina immigrants to Hawai’i are working 2 or 3 jobs or are self-employed as farmers, seamstress, store-keepers, housekeepers, baby sitters, and so forth. These women are not easy to reach through the workplace, and they are not at home during working hours when most health programs are operating and most outreach workers are trying to track potential clients. Weekends tend to be filled as well, with family, church, and social obligations. Most Filipino women enjoy congregating in groups, belonging to clubs, and having close-knit friends. Most do not understand English well enough to understand health messages. Most do not watch mainstream TV, listen to radio, or read the newspaper, so they are missing out on mainstream media campaigns. Some do not have telephones, and very few use the internet.
Thus, outreach needs to be targeted to organized groups. Although it may not be easy to get into the circle, Filipinas are usually receptive to health messaging once it is presented in-language and by a trusted figure, like a group leader or a health care provider that is introduced by the leader. Parish nurses and health ministries are well respected, and they can help recruit to health programs. Mass media campaigns should be conducted using ethnic radio, television, and print media. BCCCP services need to be provided on weekends or very early morning (like 4am) to accommodate working women.
Native Hawaiian Women
There is diversity in socio-economic status among Native Hawaiian women. Those eligible for BCCCP services are those without health insurance who are likely to have limited income, to lack permanent housing, and to have extensive family caretaking obligations. This group is somewhat transient, and many do not have phones. There is no single organization where you can reach large numbers of Hawaiian women that meet BCCCP criteria. Most of the time, one-on-one outreach is most effective. Women from Ni‘ihau (often living on Kaua’i) have limited English language, and very few health education pieces are available in Hawaiian. Whether in English or Hawaiian, health messages need to reflect Hawaiian cultural beliefs, ideas, and values. Hawaiian is a poetic and powerful language, and educational materials can be more effective when Hawaiian is incorporated. The best way to outreach is through small, naturally occurring groups and through family reunions. Ni‘ihau Hawaiians can be reached through their churches on Kaua’i.
Marshallese and Chuukese
Key informants providing outreach to Marshallese and Chuukese women noted that Marshallese and Chuukese residents in Hawai’i tend to be poor, to have low-paying jobs, to live in overcrowded housing, and to have many caretaker roles. Financial stress and crowding exacerbate problems like alcoholism and domestic violence. Thus, this group is highly transient, moving from one side of the island to the other and island to island to take advantage of the best arrangements for living, work, and education. This presents problems to programs like BCCCP, which needs to track women for purposes of follow-up and annual checks. They may also have family, social, and church obligations that keep them from seeking or keeping health appointments. Few women in this target group have telephones or share phones with others. Often, a woman will give a phone number that will be disconnected by the follow-up appointment. Very few have access to internet.
A major barrier is language, as the majority of Marshallese and Chuukese women have limited English-language skills, especially those aged 50 and older. Discussing medical or health concepts is challenging, especially when the native language does not have words for these concepts or discussion of the topic is culturally taboo or considered rude. Even with women who understand English, there are cultural nuances and protocols that should be followed. For example, Micronesian women have social cliques and circles that may limit the amount of information that can get in or out of the group. Thus, providers may have a difficult time communicating and “getting in” with these groups. Most Micronesian do not tune into mainstream media, so they are not getting media campaigns messages. To be effective, we need to “frame” our message in a way that follows cultural norms, values, and ways of understanding.
The most effective way to outreach to Marshallese and Chuukese women is to support lay educator programs, such as the lay education program operated by Micronesians United. Pacific Islander women tend to gather in groups and, if you get into the right group, you have a ready audience. Church outreach is effective, especially if you gain the support of the pastor and the pastor’s wife. Translating materials and conducting outreach in native languages can have a huge impact. A Micronesian Challenge, where women from different geographic, ethnic and church groups compete as teams, may be effective in getting women to screening and changing social norms.
Recommendations
Findings were reviewed with DOH BCCCP staff. Recommended strategies to increase BCCCP utilization by Native Hawaiians, Filipinas, and Pacific Islanders were developed in 3 areas: 1) outreach to other health care and social service providers; 2) outreach to potential clients; and 3) infrastructure changes to reduce access barriers to the BCCCP program.
Outreach to Providers
Providers in hospitals, clinics, offices, and agencies serving these groups need to learn about BCCCP and how to appropriately refer potential clients. This is best done through talks, preferably with continuing education credits attached. It is especially important to develop partnerships with agencies that serve vulnerable population, such as the Native Hawaiian Health Care Systems, the Community Health Centers, DOH’s bilingual health aides, and the Women, Infant & Children (WIC) programs, Micronesians United, and the Kaua‘i Diabetes Association.
Outreach to Potential Clients
Educational programs need to be taken to the community. They should be offered through the clubs, churches, social and family networks appropriate to the target groups. Public service announcement, paid advertising, and ideas for stories should be directed at the preferred mainstream or ethnic media outlet. Support of lay educator and navigation programs empower women from the target groups to outreach in their own communities.
Infrastructure
Clinic hours at some sites could be arranged to better accommodate working people as well as small groups who want to schedule appointments in adjoining time slots. Identify external funding sources to support expanded access to transportation, client incentives, and in-language educational materials. Also BCCCP providers should be brought together with potential clients and non-BCCCP outreach workers to strengthen relationships and share successes and challenges in serving Native Hawaiian, Filipina and Pacific Islander women.
Discussion
Our findings are not surprising. Vulnerable populations in Hawai’i face many of the same barriers as vulnerable populations in the Continental US, and strategies found to be successful in Hawai’i have also been found to work in other communities.13–19 Expanded outreach, use of lay educators, and cancer navigation programs have been shown to increase screening participation and reduce time to definitive diagnosis.20–24 Currently, both the National Cancer Institute (NCI) and the Centers for Medicare and Medicaid Services (CMS) are testing cancer patient navigation to determine if it increases the timeliness of cancer diagnosis, as well as successful resolution of cancers that are diagnosed.25,26
What is revealing is that the BCCCP, like other national and local programs, has more to learn about their target populations, especially when their contracted services providers and the populations they serve are so diverse. This assessment was contracted by the DOH to gain insights into recruitment strategies that are working, barriers or inadequacies of current outreach practices, and recommendations for improved outreach and recruitment. ‘Imi Hale agreed to conduct the assessment because it also is seeking ways to increase the participation of Native Hawaiians in the BCCCP program.
The study had several strengths. First, we gathered data from 3 distinct groups: BCCCP providers, non-BCCCP providers who are or could be referring clients to the BCCCP program, and potential BCCCP clients. Each group provided its view and, when combined, helped us develop a comprehensive understanding of the problems and potential solutions. Findings confirmed the need to improve efforts to outreach to and recruit of Native Hawaiian, Filipina and Pacific Islander women. Improving outreach and recruitment is a shared responsibility between the DOH, the BCCCP-contracted providers, and agencies that serve women in BCCCP priority populations. Unfortunately, time and funding constraints limited us to 5 focus groups for potential BCCCP clients. We were not able to conduct focus groups for each ethnic group on each of the major Hawaiian Islands. Nor could we conduct focus groups for other major Pacific Island ethnic groups, such as Samoan and Tongan.
The assessment process allowed BCCCP providers to identify issues specific to their program/facility. Comparing responses across providers helped identify cross-cutting issues and make beneficial recommendations. Cross-cutting barriers included: inadequate outreach capacity and/or culturally appropriate strategies; lack of promotion of the BCCCP; and low awareness among physicians and providers in the community about BCCCP. Agreed-upon recommendations included: increased advertising through ethnic media; educating doctors and other providers serving these groups about BCCCP; and training more lay educators to outreach in their respective communities. This study also allowed providers the opportunity to share successful outreach approaches, including lay educator programs and group appointment scheduling strategies.
In addition to cross-cutting barriers and recommendations, the data identified ethnic-specific health-seeking behaviors and preferences. Micronesians are the newest migrants to Hawai’i and come from different Pacific Island nations with their own languages and cultures. Filipinas may come from families that have been in Hawai’i for a few generations, while others are new immigrants speaking different dialects. For Native Hawaiian women, mammography screening utilization remains lower than for their Caucasian, Japanese and Chinese counterparts, and past studies in Hawai’i have identified cost and lack of insurance as one cause for this.17–18 Some groups recognize their church as a good site for outreach (Pacific Islanders, Filipina and Hawaiians women from Ni‘ihau). and some were keen on special campaigns (Filipina and Hawaiian) or use of television and radio (Filipina and Pacific Islander), and we heard this in previous research with Samoans in Hawai’i.19 All potential client groups surveyed identified one-to-one outreach as a preferred outreach method, but Filipinas and Pacific Islanders also identified a trusted and respected leader or relative as a good source for information. The next step is to begin to implement some of the recommended outreach strategies and to test their effectiveness in increasing BCCCP participation by women from the priority populations.
Conclusions
Although the identified barriers and recommended solutions are not new, raising them among Hawai’i BCCCP providers and the DOH has set the stage for change addressing concerns prioritized by BCCCP providers. The assessment provides a platform for negotiations between DOH and CDC and between BCCCP providers and DOH since contracts are renegotiated annually. Having program specific and program wide insights to recruitment successes and challenges allows for targeted action for the betterment of women who bear the largest burdens of breast cancer in Hawai‘i.
Acknowledgments
Support for this project was received from the Hawai’i State Department of Health through a grant from the Centers for Disease Control and Prevention (CDC), National Breast and Cervical Cancer Early Detection Program (U55/CCU922046) and from the National Cancer Institute Center to Reduce Cancer Health Disparities (U01-CA86105-04). We acknowledge the Breast and Cervical Cancer Control Program (BCCCP) staff at Kapi‘olani Women’s Center; The Queen’s Medical Center; Hawai‘i Medical Center; Waimanalo Health Center; American Cancer Society-West Kaua‘i; Bay Clinic; Hamakua Health Center; Hui NōKe Ola Pono; and staff at N Pu’uwai; Micronesians United; Kaua‘i Diabetes Today; and Papa Ola Lōkahi.
Footnotes
This manuscript has been seen and approved by all authors.
References
- 1.American Cancer Society, Cancer Research Center of Hawai’i, and Hawai’i Department of Health. Hawai’i Cancer Facts & Figures: 2003–2004. Honolulu, HI: Authors; [Accessed May 15, 2008]. Available at: http://www.crch.org/Cancer0304.pdf. [Google Scholar]
- 2.Goggins WB, Wong GKC. Poor survival for US Pacific Islander cancer patients: evidence from the Surveillance, Epidemiology, and End Results database: 1991 to 2004. Journal of Clinical Oncology. 2007;25:5738–5741. doi: 10.1200/JCO.2007.13.8271. [DOI] [PubMed] [Google Scholar]
- 3.Hawai’i State Department of Health. [Accessed 2005, 2006, 2007 data on 6/17/08];Behavioral Risk Factor Surveillance Survey. Available at: http://hawaii.gov/health/statistics/brfss/reports/
- 4.Braun K, Fong M, Gotay C, Pagano I, Chong C. Ethnicity and breast cancer in Hawai‘i: increased survival, but continued disparity. Ethnicity and Disease. 2005;15:453–460. [PubMed] [Google Scholar]
- 5.Tsark J, Braun K Cancer Council of the Pacific Islands. Reducing cancer health disparities in the US-associated Pacific. Journal of Public Health Management and Practice. 2007;13:49–58. doi: 10.1097/00124784-200701000-00009. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Okubo S, Matsunaga DS, Macabeo A, Kim D. Breast health for Micronesian women. Presented at the Pacific Global Public Health Conference; Honolulu, HI. June 2007; [Accessed May 15, 2008]. Available at: http://www.hawaiipublichealth.org/PDF/2007PGHCabstract.pdf. [Google Scholar]
- 7.Mishra SI, Luce-Aoelua P, Hubbell FA. Predictors of the use of Papanicolaou smears among American Samoan women. Journal of General Internal Medicine. 2001;16:320–324. doi: 10.1046/j.1525-1497.2001.00119.x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Mishra S, Luce P, Hubbell A. Breast cancer screening among American Samoan women. Preventive Medicine. 2001;33:9–17. doi: 10.1006/pmed.2001.0845. [DOI] [PubMed] [Google Scholar]
- 9.Centers for Diseases Control and Prevention. [Accessed 6/17/08];National Breast and Cervical Cancer Early Detection Program website. Available at: http://www.cdc.gov/cancer/nbccedp/
- 10.Aitaoto N, Tsark J. Report: BCCCP needs assessment and evaluation of outreach efforts to recruit eligible Native Hawaiian, Filipina and Pacific Islander women from priority populations. Honolulu, HI: Papa Ola Lokahi; 2007. [Google Scholar]
- 11.Braun K, Tsark J, Santos L, Aitaoto N, Chong C. Building Native Hawaiian capacity in cancer research and programming: The legacy of ‘Imi Hale. Cancer. 2006;107(8 Suppl):2082–90. doi: 10.1002/cncr.22157. [DOI] [PubMed] [Google Scholar]
- 12.Minkler M, Wallerstein N, editors. Community-based Participatory Research for Health. San Francisco, CA: Jossey-Bass; 2003. [Google Scholar]
- 13.Burstin HR, Lipsitz SR, Brennan TA. Socioeconomic status and risk for substandard medical care. JAMA. 1992;268:2383–2387. [PubMed] [Google Scholar]
- 14.Yergan J, Flood AB, Diehr P, LoGerfo JP. Relationship between patient source of payment and the intensity of hospital services. Medical Care. 1998;26:111–114. doi: 10.1097/00005650-198811000-00009. [DOI] [PubMed] [Google Scholar]
- 15.Guidry JJ, Aday LA, Zhang D, Winn RJ. Cost considerations as potential barriers to cancer treatment. Cancer Practice. 1998;6:182–187. doi: 10.1046/j.1523-5394.1998.006003182.x. [DOI] [PubMed] [Google Scholar]
- 16.Mandelblatt JS, Yobroff KR, Kerner JF. Equitable access to cancer services: a review of barriers to quality care. Cancer. 1999;86:2378–2390. [PubMed] [Google Scholar]
- 17.Tsark JU, Braun K. Ten-year changes in breast cancer knowledge, attitudes and practices in Native Hawaiian women. Pacific Health Dialog. 2001;8(2):280–289. [PubMed] [Google Scholar]
- 18.Braun KL, Mokuau N, Hunt GH, Kaanoi M, Gotay CC. Supports and obstacles to cancer survival for Hawaii’s native people. Cancer Practice. 2002;10:192–200. doi: 10.1046/j.1523-5394.2002.104001.x. [DOI] [PubMed] [Google Scholar]
- 19.Aitaoto NT, Braun KL, Dang KL, So’a T. Cultural Considerations in developing church-based programs to reduce cancer health disparities among Samoans. Ethnicity and Health. 2007;12:381–400. doi: 10.1080/13557850701300707. [DOI] [PubMed] [Google Scholar]
- 20.Freeman HP, Muth BJ, Kerner JF. Expanding access to cancer screening and clinical follow-up among the medically underserved. Cancer Practice. 1995;3:19–30. [PubMed] [Google Scholar]
- 21.Burhansstipanov L, Wound DB, Capelouto N, Goldfarb F, Harjo L, Hatathlie L, Vigil W, White M. Culturally relevant “navigator” patient support: the Native Sisters. Cancer Practice. 1998;6:191–194. doi: 10.1046/j.1523-5394.1998.006003191.x. [DOI] [PubMed] [Google Scholar]
- 22.Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer. 2005 Aug 15;104(4):848–55. doi: 10.1002/cncr.21214. [DOI] [PubMed] [Google Scholar]
- 23.Steinberg ML, Fremont A, Khan DC, Huang D, Knapp H, Karaman D, Forge N, Andre K, Chaiken LM, Streeter OE., Jr Lay patient navigator program implementation for equal access to cancer care and clinical trials: essential steps and initial challenges. Cancer. 2006 Dec 1;107(11):2669–77. doi: 10.1002/cncr.22319. [DOI] [PubMed] [Google Scholar]
- 24.Ell K, Vourlekis B, Lee PJ, Xie B. Patient navigation and case management following an abnormal mammogram: a randomized clinical trial. Preventive Medicine. 2007;44:26–33. doi: 10.1016/j.ypmed.2006.08.001. [DOI] [PubMed] [Google Scholar]
- 25.Center for Medicare and Medicaid Services. [Accessed May 12, 2008];Cancer Prevention and Treatment Demonstration for Ethnic and Racial Minorities. Available at: http://www.cms.hhs.gov/DemoProjectsEvalRpts/downloads/CPTD_FactSheet.pdf.
- 26.National Cancer Institute. [Accessed May 12, 2008];Center to Reduce Cancer Health Disparities. Available at: http://crchd.cancer.gov.
