Native Hawaiian women have the highest breast cancer incidence and mortality rates when compared with other large ethnic groups in Hawai‘i. Like other women, they rely on the support of their families as co-survivors. This project explored the feasibility and effects of a culturally tailored educational intervention designed to build family capacity by improving the knowledge and skills of the woman and her family in dealing with breast cancer, particularly in the latter stage of recovery care. Twenty-nine Native Hawaiian women with breast cancer, along with a close family member, were randomly assigned to the intervention (n = 15) or a wait-list control group (n = 14). The authors assessed the knowledge, self-efficacy, and coping skills of women and their family members and the recovery care behaviors of the women at baseline and at four months (after the intervention or control period). The intervention group made significant improvements in self-efficacy and coping; the wait-list control group did not. Evaluation of the intervention suggests that it was well received by participants. This work has relevance for social workers wanting to design and test culturally appropriate interventions for minority groups.
cancer; culturally tailored intervention; family support; Native Hawaiian
The purpose of this paper is to describe ‘Imi Hale, a program developed and managed by Native Hawaiians to increase cancer awareness and research capacity among Native Hawaiians. This US subgroup of indigenous people of the Hawaiian islands has disproportionately high rates of cancer mortality and low rates of participation in health and research careers.
As a community-based research project, ‘Imi Hale spent its first year gathering data from Native Hawaiians about their cancer awareness and research priorities. These findings guide ‘Imi Hale’s community and scientific advisors, a community-based Institutional Review Board, Na Liko Noelo (budding researchers), and staff in developing and carrying out projects that address these priority areas. Emphasis is placed on transferring skills and resources to Native Hawaiians through training, technical assistance, and mentorship. A biennial survey assesses the extent to which community-based participatory research principles are being followed.
By the end of the second year, statewide and island-specific awareness plans were produced, and 9 funded awareness projects are supporting the development and dissemination of Hawaiian health education materials. Research accomplishments include the enrollment of 42 Native Hawaiian Na Liko Noelo (budding researchers), 22 of which are involved in 14 funded research projects. The biennial evaluation survey found that 92% of our advisors felt that ‘Imi Hale was promoting scientifically rigorous research that was culturally appropriate and respectful of Native Hawaiian beliefs, and 96% felt that ‘Imi Hale was following its own principles of community-based participatory research.
‘Imi Hale’s community-based approach to promoting cancer awareness will result in a sustainable infrastructure for reducing the cancer burden on Native Hawaiians.
Cancer mortality continues to be higher in Native Hawaiians than Whites, and research has identified numerous barriers to good cancer care. Cancer navigator programs provide individualized assistance to patients and family members to overcome barriers, promoting early diagnosis and timely and complete treatment.
Our purpose was to design a training curriculum to provide community-based outreach workers serving Native Hawaiians with cancer patient navigator skills.
The Ho`okele i ke Ola (Navigating to Health) curriculum was informed by data gathered from Native Hawaiian cancer patients and their family members, outreach workers in Native Hawaiian communities, and cancer care providers. Based on findings, the 48-hour curriculum focused on cancer knowledge, cancer resources, and cancer communications. Three versions were developed: 1) 6 days of training and on-site tours in urban Honolulu; 2) 4 days of training on a neighbor island, with 2 days of on-site tours in Honolulu; and 3) a 3-credit community college independent study course. Graduates were interviewed after each session and 3 months after graduation about application of navigation skills.
In 18 months, 62 health workers from community-based, clinical and community college settings were trained—31 in Honolulu-based trainings, 29 in neighbor island trainings where earlier graduates served as co-faculty, and 2 through Maui Community College. Follow-up data suggest increased knowledge, skills, capacity, and feelings of competence among trainees.
All three versions of the Ho`okele i ke Ola curriculum, developed with community input, have proven successful in increasing cancer patient navigation skills of trainees.
access to health care; cancer patient navigation; case management; community health aides; oncology; Pacific Islander Americans; utilization
The incidence of non-AIDS-defining cancers has increased significantly among persons living with HIV (PLHIV). Screening education is recommended.
Social learning, minority stress, and cultural safety theories informed this pilot to assess the feasibility of a colorectal cancer screening intervention targeted to PLHIV, with additional tailoring for relevance to Native Hawaiians, a group with low participation in cancer screening.
The targeted education included behavioral modeling and barriers counseling in a culturally safe environment. Using a 2-group, pre/posttest design, AIDS service organizations were randomized to culturally responsive or standard education. AIDS service organizations consumers recruited through venue-based promotions were the unit of analysis. Knowledge–attitudes–practices, fecal occult blood test screening completion, and intervention feasibility were measured.
Treatment arm participants, regardless of ethnicity, adhered to fecal occult blood test instructions and achieved increases in screening knowledge, attitudes, and practices. Relevance and acceptability of the educational intervention were endorsed.
The culturally responsive intervention was successful in this group of PLHIV. Additional tailoring may be needed to reach PLHIV who do not participate in organizational activities.
Conclusion/Translation to Health Education Practice
This culturally responsive intervention shows promise for efficacy testing in a broader PLHIV population. Constituent-involving strategies were central to its development and delivery.
Only 2.5%–3% of adult cancer patients participate in cancer clinical trials, yet about 20% of cancer patients are medically eligible to participate. Research suggests that the primary care provider (PCP) can influence a patient's awareness of, and potentially, his or her decision to consider a clinical trial. To address low cancer clinical trial accrual rates, ‘Imi Hale Native Hawaiian Cancer Network partnered with The Queen's Cancer Center to provide and evaluate education on clinical trials to Hawai‘i PCPs. The educational materials were developed from a national curriculum and tailored to local audiences. Objectives of the curriculum were to educate PCPs about common myths (attitudinal barriers) around clinical trials and suggest ways that PCPs can introduce the concept of clinical trials to their patients with cancer or suspicion of cancer. The curriculum was tested on 128 PCPs in 2012. Knowledge of the PCP's role and their willingness to mention clinical trials were measured through a post-test immediately following the presentation, which 74 (58%) PCPs completed. The post-test results suggested an increase in awareness among PCPs of their potential role in cancer clinical trial accrual, and an increase in PCP willingness to mention clinical trials to their patients with suspicion of cancer or diagnosed with cancer. Although findings suggest that this intervention is useful in increasing PCP receptivity to promoting cancer clinical trials, more research is needed to test if increased willingness results in increased accrual of cancer patients into clinical trials in Hawai‘i.
Although large numbers of cancer survivors exist in every community, including minority communities, there is a significant gap in knowledge about best practices for these patients.
Community Networks Programs (CNPs) funded by the National Cancer Institute’s Center to Reduce Cancer Health Disparities, have developed and tested unique services for these communities. These programs have utilized community based participatory research techniques under a framework of diffusion of innovation and communications theory.
This article describes some specifically tailored interventions that may be useful to a wide range of providers working with the underserved
Enhancing life after cancer can be achieved in underserved communities by supplementing local resources.
community networks; cancer; quality of life; health disparities; palliative care; comprehensive cancer care; spirituality
The authors examined the relationship between low health literacy (LHL), limited English proficiency (LEP), and meeting current U.S. Preventive Service Task Force colorectal cancer (CRC) screening guidelines for Asians and Whites in California. For 1,478 Asian and 14,410 White respondents 50–75 years of age in the 2007 California Health Interview Survey, the authors examined meeting CRC screening guidelines using multivariable logistic models by LEP and LHL separately and in combination. Analyses were run with the full sample, then separately for Whites and Asians controlling for demographics and insurance. For those with LEP, patient-provider language concordance and CRC screening was examined. Overall, respondents with LEP and LHL were the least likely to meet CRC screening guidelines (36%) followed by LEP-only (45%), LHL-only (51%), and those with neither LHL nor LEP (59%), a hierarchy that remained significant in multivariable models. For Whites, LHL-only was associated with screening, whereas LEP-only and LEP and LHL were significant for Asians. Having a language concordant provider was not significantly associated with CRC screening among those with LEP. Health literacy is associated with CRC screening, but English proficiency is also critical to consider. Asians with both LEP and LHL appear particularly vulnerable to cancer screening disparities.
Worksite health promotion programs can reduce prevalence of chronic disease among employees, but little research has been done to discern whether they meet the needs and incorporate the preferences of workers of different occupational types. The objective of this study is to examine differences in influences to healthy eating and physical activity and preferences for programs among multiethnic blue- and white-collar workers in Hawai‘i. A total of 57 employees from a major health care corporation in Hawai‘i participated. A mixed-methods approach was employed, in which findings from focus groups with white-collar workers (WCW) (n=18) were used to inform development of a questionnaire with closed and open-ended items for use with blue-collar workers (BCW) (n=39), whose jobs did not provide adequate time to participate in focus groups. Focus groups with WCW revealed that onsite availability of healthy food and fitness opportunities provided the most support for healthy eating and physical activity at work; work demands, easy access to unhealthy foods, and lack of onsite fitness opportunities were barriers; and lifestyle management was a topic of substantial interest. BCW cited the ability to bring home lunch and their (physically active) jobs as being supportive of healthy behaviors; not having enough time to eat and personal illness/injury were barriers; and chronic disease topics were of greatest interest. Knowing differences in influences to healthy eating and physical activity, as well as preferences for worksite wellness programming, among BCW and WCW, is important when planning and implementing worksite health promotion programs.
Community-based participatory research (CBPR) initiatives such as the National Cancer Institute’s Community Networks Program (CNP) (2005–2010) often emphasize training of junior investigators from underrepresented backgrounds to address health disparities. From July to October 2010, a convenience sample of 80 participants from the 25 CNP national sites completed our 45-item, web-based survey on the training and mentoring of junior investigators. This study assessed the academic productivity and CBPR-related experiences of the CNP junior investigators (n=37). Those from underrepresented backgrounds reported giving more presentations in non-academic settings (9 vs. 4 in last 5 years, p=0.01), having more co-authored publications (8 vs. 3 in last 5 years, p=0.01), and spending more time on CBPR-related activities than their non-underrepresented counterparts. Regardless of background, junior investigators shared similar levels of satisfaction with their mentors and CBPR experiences. This study provides support for the success of the CNP’s training program, especially effort directed at underrepresented investigators.
Research suggests that cancer patient navigation improves care, but few reports describe the variety of patients managed by a hospital-based navigation program. Differences in navigated patients by the intensity (low, medium, or high) of navigation services they received were examined. The 835 clients seen by the navigators in a hospital-based cancer center were first stratified by quarter and by four ethnic groups. Randomized selection from each group assured there would be equal representation for analysis of Hawaiians, Filipinos, Japanese, and Whites and even numbers over all time intervals. Five professionals extracted data from these case records on demographics, type/stage of cancer, diagnosis and treatment dates, barriers, and navigator actions. Clients had breast (30.0%), lung (15.8%), esophageal (6.7%), colon (5.8%), ovarian (4.2%), prostate (3.3%), and other cancers (34.2%). The median number of actions taken on behalf of a client was 4 (range 1–83), and the median number of days a case was open was 14 (range 1–216). High intensity cases (those receiving more assistance over longer periods of time) were more likely than low-intensity cases to need help with education and reassurance, transportation, care coordination, and covering costs. Although there were no demographic differences across intensity groups, Neighbor Island patients from Hawai‘i, Maui, Moloka‘i, Lana‘i and Kaua‘i were more likely to need help with arranging travel, care coordination, and costs associated with getting treatment (all at P=.05), and patients on public insurance were more likely to have stage 4 cancer (P=.001) and to need help with costs (P=.006). Findings suggest that this hospital-based navigation program is filling a real need of patients across the cancer care continuum. A triage protocol and an integrated data capture system could help improve the targeting and documentation of cancer patient navigation services.
To examine how the National Cancer Institute-funded Community Network Program (CNP) operationalized principles of community-based participatory research (CBPR).
Based on our review of the literature and extant CBPR measurement tools, scientists from nine of 25 CNPs developed a 27-item questionnaire to self-assess CNP operationalization of nine CBPR principles.
Of 25 CNPs, 22 (88%) completed the questionnaire. Most scored well on CBPR principles to recognize community as a unit of identity, build on community strengths, facilitate co-learning, embrace iterative processes in developing community capacity, and achieve a balance between data generation and intervention. CNPs varied in extent to which they employed CBPR principles of addressing determinants of health, sharing power among partners, engaging community in research dissemination, and striving for sustainability.
Although tool development in this field is in its infancy, findings suggest that fidelity to CBPR processes can be assessed in a variety of settings.
Cancer disparities; community health; empowerment; health status disparities; indigenous populations; minority health; partnerships; training
Cancer patient navigation (PN) programs have been shown to increase access to and utilization of cancer care for poor and underserved individuals. Despite mounting evidence of its value, cancer patient navigation is not universally understood or provided. We describe five PN programs and the range of tasks their navigators provide across the cancer care continuum (education and outreach, screening, diagnosis and staging, treatment, survivorship, and end-of-life). Tasks are organized by their potential to make cancer services understandable, available, accessible, affordable, appropriate, and accountable. Although navigators perform similar tasks across the five programs, their specific approaches reflect differences in community culture, context, program setting, and funding. Task lists can inform the development of programs, job descriptions, training, and evaluation. They also may be useful in the move to certify navigators and establish mechanisms for reimbursement for navigation services.
Access to health care; case management; certification; health care disparities; indigenous populations; minority health
In 2005, approximately 26% of Micronesian women aged 40 or older in Hawai‘i used mammography for breast cancer screening. We describe an 18-month project to increase screening participation in this population by tailoring educational materials and using a lay educator approach.
New immigrants to Hawai‘i are Marshallese from the Republic of the Marshall Islands and Chuukese, Pohnpeians, and Kosraeans from the Federated States of Micronesia. In Hawai‘i, these 4 groups refer to themselves collectively as Micronesians, although each group has its own distinct culture and language.
From 2006 through 2007, we applied principles of community-based participatory research —trust building, joint assessment, cultural tailoring of materials, and skills transfer —to develop and track the reach of Micronesian women lay educators in implementing a cancer awareness program among Micronesian women living in Hawai‘i.
Using our tailored in-language materials, 11 lay educators (5 Chuukese, 3 Marshallese, 2 Pohnpeians, and 1 Kosraean) provided one-on-one and small group in-language cancer information sessions to 567 Micronesian women (aged 18-75 years). Among the 202 women aged 40 or older eligible for mammography screening, 166 (82%) had never had a mammogram and were assisted to screening appointments. After 6 months, 146 (88%) of the 166 had received a mammogram, increasing compliance from 18% to 90%. Lay educators reported increases in their skills and their self-esteem and want to extend their skills to other health issues, including diabetes management and immunization.
Tailoring materials and using the lay educator model successfully increased participation in breast cancer screening. This model may work in other communities that aim to reduce disparities in access to cancer screening.
This article describes the activities performed by cancer patient navigators in community-based and hospital settings. The case study demonstrates the depth and breadth of navigation activities and illustrates how hospital-based and community-based navigators work together to help individuals access cancer care and complete cancer treatment.
access to health care; cancer patient navigation; case management; health disparities; barriers to cancer care; oncology; Native Hawaiian
Native Hawaiians comprise 24.3% of Hawai‘i's population, but only 12.6% of the state's older adults. Few published studies have compared health indicators across ethnicities for the state's older adult population or focused on disparities of Native Hawaiian elders. The current study examines data from two state surveillance programs, with attention to cause of death and social-behavioral factors relevant to elders. Findings reveal that Native Hawaiians have the largest years of productive life lost and the lowest life expectancy, when compared to the state's other major ethnic groups. Heart disease and cancer are leading causes of premature mortality. Native Hawaiian elders are more likely to report behavioral health risks such as smoking and obesity, live within/below 100–199% of the poverty level, and find cost a barrier to seeking care. Indicated is the need for affordable care across the lifespan and health services continuum. Future research might explain behavioral factors as influenced by social determinants, including historical trauma on Native Hawaiian longevity.
The elderly consume a disproportionate amount of health care resources, and the recent trend in obesity will only escalate costs. EnhanceFitness® (EF) is an exercise program designed to increase the strength, flexibility, and balance of older adults. A comprehensive controlled study in Washington state of an elderly population has shown that participants who attend at least one EF class per week reduce healthcare costs by 20% per year. The present study reports the costs and potential benefits of replicating EF on Kaua‘i. For Kaua‘i the annual cost of an EF pilot program for 132 clients would be $204,735. Attendance records of the Kaua‘i program showed that 96 (73%) of those enrolled attended at least weekly. Based on national reports of healthcare costs for the elderly, averting 20% of the costs for these 96 elderly would save $344,256 per year. The expected investment to return ratio, I-R ratio, for EF on Kaua‘i is about 1–1.8. On economic grounds, a case can be made to support and expand these types of programs. In these times of budget cuts, cost-benefit analysis provides a common economic “language” to prioritize among different programs.
Native Hawaiian women are burdened by disproportionately high mortality from breast cancer, which is attributed to low participation in routine mammography. Mammography is proven to be an effective means for detecting disease at its earliest stages when treatments are most likely to be successful. Culturally-tailored screening programs may increase participation and Hawaiian initiatives call for screening innovations that integrate Hawaiian cultural strengths, including those related to spirituality and the extended family system. Before full-scale testing of tailored interventions, it is important to conduct feasibility studies that gauge community receptiveness to the proposed intervention and research methods. We report on the feasibility of delivering a church-based, breast cancer screening intervention tailored on the cultural strengths of rural-dwelling Hawaiians. Results establish the attractiveness and potential effectiveness of the intervention. Recruitment exceeded targets and retention rates were comparable to those of other randomized behavioral trials, confirming the value of reaching rural Hawaiian women through churches. Women appreciated the integrative approach of Hawaiian and faith-based values and positive outcomes are suggested. This article may be relevant to social workers interested in culturally-responsive, community-based interventions, as well to researchers conducting pilot studies and controlled trials of interventions adapted from evidence-based programs.
breast cancer; churches; culture; disparities; feasibility study; indigenous population; mammography; Native Hawaiians
To assess cancer prevention and control capacity in the US-associated Pacific Islands (USAPI, including American Samoa, Northern Mariana Islands, Micronesia, Guam, Marshall Islands, and Palau) and to support indigenous leadership in reducing cancer health disparities.
Jurisdiction-specific needs assessments were conducted to assess cancer prevention and control capacity and challenges, The Cancer Council of the Pacific islands (CCPI), an indigenous health leadership team from public health and medicine, was supported to review assessment findings, develop priorities, and build capacity to address recommendations.
Capacity varied across jurisdictions, but generally there is limited ability to measure cancer burden and a lack of programs, equipment, and trained personnel to detect and treat cancer. Most cancers are diagnosed in late stages when survival is compromised and care is most costly. Jurisdictions also are challenged by geographic, social, and political constraints and multiple in-country demands for funding. Based on findings, strategies were developed by the CCPI to guide efforts, including fund seeking, to expand cancer prevention and control capacity in regionally appropriate ways.
Concerted planning, training, and funding efforts are needed to overcome challenges and upgrade capacity in cancer education, prevention, detection, and treatment in the USAPI. Indigenous leadership and local capacity building are essential to this process.
community health services; developing countries; health services needs; Healthy People 2010; needs assessment; Pacific Islander Americans; trust territory
Native Hawaiians have high incidence rates of cancers diagnosed in late stages and, thus, many might benefit from participation in cancer clinical trials. A survey was developed to explore knowledge, attitudes, and practices of Hawai’i oncologists with regard to cancer treatment clinical trials and Native Hawaiian participation in them. Findings suggest that most cancer specialists are supportive of clinical trials. However, physicians identified a number of barriers to Native Hawaiian participation in clinical trials. Ways to increase participation in clinical trials are suggested.
Native Hawaiians have a high cancer burden, but few culturally targeted cancer education brochures exist. The authors followed a participatory four-step protocol, involving more than 200 health providers and clients, to develop and test culturally targeted brochures on skin, oral, cervical, prostate, and testicular cancers. The final products featured Hawaiian faces, scenes, words, and activities. They proved more attractive than existing materials, in particular to younger Hawaiians, and posttests suggested good comprehension of intended messages. This protocol may have application in other communities that want to develop brochures that are attractive, acceptable, readable, and useful to minority clients and their providers.
action research; consumer participation; culture; focus groups; Hawai'i; health promotion; indigenous population; information dissemination; neoplasm; Pacific Islander Americans
We tested an intervention based on social learning theory (SLT) to improve colorectal cancer (CRC) screening among Native Hawaiians, a group with low CRC screening rates.
Sixteen Hawaiian civic clubs agreed to randomization. Eight control clubs received a culturally targeted presentation, a free Fecal Occult Blood Test (FOBT), and a reminder call. Eight experimental clubs also received culturally targeted education and free testing; but, in line with SLT, education was delivered by a Native Hawaiian physician and Native llawaiian CRC survivor, and members received an FOBT demo, were challenged to involve a family member in screening, and were telephoncd multiple times to address change-related emotions and barriers.
One hundred twenty-one members age 50 and older from 16 clubs participated. At the club level. screening rates were modestly increased in four experimental clubs and six control clubs. Surprisingly, 64% of participants reported being up to date with CRC screening at baseline. Only 13 individuals (five in experimental arm and eight in the control arm) were screened for the first time through this intervention, increasing the percent screened from 59% to 67% in the experimental group and from 69% to 85% in the control group. Although individuals in the experimental arm were more likely to rate the intervention as culturally appropriate, both arms realized similar and significant gains in CRC knowledge, attitudes, intent, and self-efficacy.
For Native Hawaiian individuals belonging to a network or civic clubs, an intervention based on SLT delivered by a Native Hawaiian physician and CRC survivor was less effective at further increasing compliance than was a culturally targeted educational session delivered by a non-Hawaiian nurse. That CRC screening compliance was high prior to our intervention suggests that we targeted a very health conscious segment of the Native Hawaiian population. Future work should focus on underserved segments of this indigenous group.
Cultural diversity; Health services research; Mass screening; Pacific Islander Americans; Psychological theory
Native Hawaiians are underrepresented in health research. They also have expressed dissatisfaction with the way in which many non-native researchers have formulated research questions, conducted research, and disseminated findings about Native Hawaiians. ‘Imi Hale - Native Hawaiian Cancer Network was funded by the National Cancer Institute to increase research training and mentorship opportunities for Native Hawaiians. To this end, ‘Imi Hale has followed principles of community-based participatory research to engage community members in identifying research priorities and assuring that research is beneficial, and not harmful, to Native Hawaiians. Developing indigenous researchers is a cornerstone of the program and, in its first 4 years ‘Imi Hale enrolled 78 Native Hawaiian “budding researchers (called Nā Liko Noelo in Hawaiian), of which 40 (68%) have participated in at least one training and 28 (36%) have served as investigators, 40 (51%) as research assistants, and 10 (13%) as mentors on cancer prevention and control studies. The major challenge for Nā Liko Noelo is finding the time needed to devote to research and writing scientific papers, as most have competing professional and personal obligations. Program evaluation efforts suggest, however, that ‘Imi Hale and its Nā Liko Noelo program are well accepted and are helping develop a cadré of community-sensitive indigenous Hawaiian researchers.
action research; Native Hawaiians; Pacific Islanders; research training; mentorship; community-based participatory research