Development of a family intervention for Native Hawaiian women with cancer: a pilot study.

Mokuau, Noreen ; Braun, Kathryn L. ; Wong, Linda K. 等

Although cancer is the second leading cause of death in the United States (American Cancer Society [ACS], 2004), there have been notable reductions in deaths associated with this disease. In the 1930s, less than 20 percent of cancer patients were living five years after their treatment (ACS, 2003-2004). Today, however, improvements in the treatment of cancer have allowed more people to survive this devastating disease. Approximately 62 percent of cancer survivors are expected to live at least five years after their diagnosis (ACS, 2003), and it is projected that the number of survivors will increase steadily over the coming years (Centers for Disease Control and Prevention and Lance Armstrong Foundation [CDC & LAF], 2004).

Despite the decline in deaths from cancer, some groups have not fully benefited from the advances in medical technology and treatment. One such group is Native Hawaiians, a group indigenous to the islands of Hawai'i. Native Hawaiian women's health disparities are evidenced by their high cancer rates and low survival rates. In the state of Hawai'i, Native Hawaiian women, when compared with other ethnic and racial groups, have the highest death rates for all cancers combined (Tsark, 1998) and, in particular, are diagnosed at significantly younger ages and later stages for breast cancer (Braun, Fong, Gotay, Pagano, & Chong, 2005). When compared with other ethnic and racial groups in the United States, they have the second highest mortality rates for all cancers combined (Tsark, 1998). Their five-year survival rate from 1990 to 1995 was 53 percent (Tsark, 1998).

Numerous factors contribute to these rates for Native Hawaiians, including late detection and diagnoses at more advanced stages, high prevalence of behavioral risk factors, and genetic markers of tumor aggressiveness (Braun et al., 2005). However, one factor receiving increasing attention relates to the lack of culturally appropriate interventions, particularly those that focus on the family (Ka'opua, Gotay, Hannum, & Bunghanoy, 2005).

Native Hawaiian women, as with other women, typically experience their cancer in the context of their families. There is a growing body of literature that documents the effects of cancer not only on the patient, but also on the entire family (Baider, Cooper, & De-Nour, 2000;Veach, Nicholas, & Barton, 2002). The importance of family in dealing with cancer has led the National Cancer Institute to expand its definition of "cancer survivor" to include caregivers and family members as well as the person diagnosed with cancer (CDC & LAF, 2004).

The inclusion of the family in "survivorship" and the subsequent need to explore family support as a resource in dealing with cancer are of vital importance. Evidence demonstrates that family support as a resource can help the cancer patient cope with the illness and, in the best circumstances, reinforce the patient's efforts to stay healthy (Bloom, 2000; Keller, Henrich, Sellschopp, & Beutel, 1996; Lichtman & Taylor, 1986). The types of support that can be rendered by families include informational, tangible, and emotional support. Informational support refers to the provision of knowledge relevant to the cancer experience. Tangible support refers to specific assistance that others may provide to the cancer patient, such as child care and transportation to a medical appointment. Emotional support is the demonstration of caring and reassuring thoughts and behaviors. The body of literature on family support, unfortunately, excludes an examination of special populations such as Native Hawaiians.

NATIVE HAWAIIANS

As in other ethnic groups (Bloom, 2000; Keller et al., 1996), family ('ohana in the Hawaiian language) is a primary resource for Native Hawaiians who experience cancer. Consistent with the general literature, focus groups with Native Hawaiian female cancer patients and their 'ohana identified three key needs--easy access to information, tangible assistance with physical care, and emotional attention (Braun, Mokuau, Hunt, Ka'anoi, & Gotay, 2002).

We learned that, although Native Hawaiian "ohana strive to provide the best level of care for their ill member, deficits in knowledge, information seeking, and negotiation capabilities presented obstacles to care of the ill member. For example, a woman whose mother had cancer disclosed that she did not know what questions to ask the physician about her mother's treatment and, thus, felt at a disadvantage in her care. We also were reminded of the greater emphasis on family than individual well-being in Hawaiian culture, with expectations that individual family members may have to forgo individual pursuits for the good of the group. For example, a daughter related that her mother would avoid or quit treatment if she felt that treatment would interfere with her ability to complete tasks associated with her roles (as wife and mother) within the family. The daughter felt that "ohana members could use help reassigning daily household chores (for example, food shopping), so their mother would have the time to comply with recommendations for treatment, follow-up, and recovery.

In light of these findings, we felt that a family-oriented (rather than an individually oriented) intervention that incorporates Hawaiian values may be of benefit to Native Hawaiian women with cancer and facilitate coping in the "ohana. This article reports on a pilot study of the feasibility of providing and measuring the impact of such an intervention. Although focused on Native Hawaiians, who comprise less than 1 percent of the U.S. population, our work has relevance for other social workers who want to design and test the feasibility of culturally appropriate interventions for other minority groups.

METHOD

The study was approved by the institutional review boards (IRBs) of both the University of Hawai'i and the Native Hawaiian Health Care Systems. The latter is a community-based IRB that reviews research in Hawaiian communities; its reviewers consider the cultural and social impact of studies in addition to human protection concerns (Braun, Tsark, Santos, Aitaoto, & Chong, 2006). Because our study was a feasibility study, we were concerned with assessing recruitment, retention, measures, and intervention components, in addition to securing preliminary data on the effectiveness of the intervention. Thus, we conducted a small sample randomized trial, with participants assigned to either the culturally tailored intervention or to a less intensive control condition. Because many Native Hawaiians have reported negative experiences with research, which in the past was conducted primarily by non-Hawaiians who appeared more concerned with advancing individual and institutional priorities than in reducing disparities (Braun et al., 2006), the construction of a no-treatment control group (a hallmark of earlier research) was not considered.

Intervention and Control Conditions

Intervention. The intervention was designed to increase knowledge and behavioral capabilities of the 'ohana, thereby enhancing its ability to provide informational, tangible, and emotional support to the woman with cancer. Areas of knowledge included cancer basics, such as understanding treatment options and associated side effects. Behavioral skills training emphasized telephone and Internet information seeking, communication with the physician and other health care providers, and renegotiation of household duties. In developing a culturally appropriate intervention, key cultural characteristics for Native Hawaiians were considered, including an emphasis on spirituality and connections of Hawaiians to each other; a focus on the 'ohana, rather than the individual, and members' kuleana (responsibility) within the family; the incorporation of Hawaiian values and "olelo no 'eau (proverbs) in the intervention materials and sessions; and the sharing of food (mea'ai) (Handy & Pukui, 1977; Pukui, Haertig, & Lee, 1972).

The intervention was provided to the cancer survivor and one or two survivor-selected family members together. Sessions always began with a prayer (pule) in which both God and ancestral spirits were invoked for guidance, and often these prayers were said by a kupuna (elder) from the 'ohana. Participants and staff would then disclose their genealogies to affirm their spiritual origins, discover familial connections, and foster trust. An example of a proverb included in the materials was "e ola koa," which means to "live a long time, like a koa tree in the forest" and implies that every individual koa tree needs to live long if the forest is to be healthy. Other cultural values, such as kokua (cooperation), kako'o (to support or uphold), and aloha (love), were intrinsic to the intervention. Intervention materials were illustrated with graphics that depicted Hawaiian scenes of nature and people. All materials were packaged in woven lauhala (plant fiber) bags, recognizing the importance of the lauhala tree in Hawaiian rituals and symbolizing the interwoven bonds of the 'ohana. Finally, with the cultural emphasis on "feeding the spirit within," food was always shared with the 'ohana.

The intervention itself consisted of six sessions over a three-month period (see Table 1). It was provided by four MSWs, one of whom also was a cancer information specialist, in teams of two. Three staff members were Native Hawaiian, and the cancer information specialist was a lifetime resident of Hawai'i intimately familiar with Hawaiian culture. In the first session, introductions were made, the consent form and measures were administered, educational materials were distributed, and supplies, such as speakerphones (for accessing information so that all "ohana members could hear) and bulletin boards (for posting information such as medical appointments and household chores) were provided. The educational materials and supplies were provided in the lauhala basket, which participants then could keep.

In session two, participants learned how to use the speakerphones to access cancer information from the Cancer Information Service (CIS), the National Cancer Institute's information link to the public. The third session taught families to access information through the Internet, using either a home computer or one at the local library. In session four, 'ohana was assisted with defining and renegotiating roles to facilitate the cancer survivor's ability to comply with treatment recommendations. Staff members taught communication skills in session five, and role-playing talk with physicians and other providers took place. Interpersonal and emotional issues around death, loss, and change most frequently emerged in sessions four and five, as participants discussed their personal roles and responsibilities in supporting the cancer survivor and each other. In the final session, the measures were readministered, participants were thanked, and a final prayer was offered for the 'ohana.

In addition, sessions two through six included a review of the previous session, both to confirm that knowledge was retained over time and to address new questions. The sites for the intervention varied according to the interests of the 'ohana and included homes, business offices, and libraries.

Control. Women in the control group also invited one to three family members to participate, but this group received only two visits from the research team over three months (see Table 1). Similarly to the intervention group, two team members attended these sessions, and the first session began with a culturally competent introduction process, the consent form was reviewed, and baseline data were collected. Then, a packet of readily available educational brochures was provided and reviewed, and questions were answered. The second session was devoted to answering additional questions, gathering poststudy data, and closure. In addition to being much less intensive, the control condition was not culturally targeted outside of the introduction process, which was deemed necessary to retain members of the control group in the study.

Sample

Several recruitment strategies were used, including mailing study information to physicians and other providers, promoting the study through print and electronic media, and staffing a telephone hotline where potential participants could get more information. All inquiries were followed with face-to-face contact. As part of our feasibility assessment, we wanted to determine whether the intervention worked with a variety of cancer types and ages, so the only inclusion criteria were Native Hawaiian, female, and diagnosed with cancer within the past 12 months.

Twelve women volunteered for the study. To facilitate random assignment, 12 envelopes were prepared and sealed by an independent statistician. Each envelope included a paper with "intervention" or "control" written on it. After a woman signed the consent form, her name was written on the outside of one of the envelopes, which was then opened to determine her assignment. In this way, six Native Hawaiian women were assigned to the intervention group and six were assigned to the control group. However, two women assigned to the control group withdrew from the study before the collection of baseline data, leaving six in the intervention and four in the control groups. As the women were blind to which group they were randomized to, and the control group was not a "no-treatment" control, we assumed that the fact that both withdrawals were from the control group was a matter of chance.

Comparing the groups demographically, the mean age of women in the two groups was similar (about 55 years), and ages ranged from 25 years to 76 years in the intervention group and 48 years to 84 years in the control group. Women were three to 12 months postdiagnosis (M = six months). Breast cancer was the diagnosis for three women in the intervention group and two women in the control group; other women's cancers were ovarian (control), throat (control), uterine (intervention), lung (intervention), and lymphoma (intervention). Women in both groups invited one to three family members to participate in the study (M = two members). Family members were primarily spouses and adult children. The mean age of family members was about 54 years in both groups, and about one-half of the family members in each group were men.

Measures

In addition to a participant profile that solicited information on sociodemographics, diagnosis, and family composition, there were five measures to assess intervention effects--a cancer knowledge inventory, a self-efficacy scale, a coping scale, a psychological distress inventory, and an adjustment scale.

To assess cancer knowledge, an inventory of 15 true-false items was constructed from materials in the Cancer Survival Toolbox and other resources (Morra & Potts, 1994; National Coalition for Cancer Survivorship, 1998). Sample items included "cancer is contagious," "a Pap test detects ovarian cancer," and "CIS provides a nationwide toll-free telephone service for people with cancer and their families." Correct answers were counted, for a possible range of scores from 0 = no correct answers to 15 = all correct answers. In pretesting, the scale's internal reliability and test-retest reliability were moderate ([alpha] = .66 and r = .72, respectively).

A 12-item scale on self-efficacy also was constructed, asking participants to evaluate their confidence in getting information on cancer, accessing resources, discussing care with the physician, getting help, and negotiating family tasks . These were scored on a 10-point Likert-type scale. Possible scores ranged from 12 = not confident with any item to 120 = very confident with every item. Based on pretest data, the scale's internal reliability was high (ix = .91), and the test-retest coefficient was moderate (r = .68). A moderate correlation (.64) between this scale and our measure of coping (described below) supports its validity.

We used the Family Crisis-Oriented Personal Evaluation Scale (F-COPES), a 30-item five-point Likert-type scale (1 = strongly disagree to 5 = strongly agree), to measure family coping behaviors overall and on five subscales: (1) Social Support, (2) Reframing, (3) Spiritual Support, (4) Mobilizing Family to Accept Help, and (5) Passive Appraisal (McCubbin, Larsen, & Olson, 1982). Total scores ranged from 30 to 150, with a high score representing an increased number of coping strategies used. For the total score, Cronbach's alpha was .77, and subscale reliability ranged from .62 to .83 (Fobair & Zabora, 1995).

The 53-item Brief Symptom Inventory (BSI), a shorter version of the Symptom Checklist-90 that measures psychological distress, was included. The Global Severity Index was constructed by adding scores on each item (scored using a five-point Likert scale ranging from 0 = no experiencing of the symptom to 4 = frequent experiencing of the symptom) for a possible range of from 0 to 212; reliability for the overall score was .80 (Derogatis, 1975a).

We proposed using the 46-item, four-point Likert-type Psychosocial Adjustment to Illness Scale-Self-Report (PAIS-Stk) to assess illness adjustment of patients (Derogatis, 1975b). However, family members complained that the tool was inappropriate for them, inasmuch as the questions focused on the patient's experiences. For example, questions focused on patients' experiences at home, work, and social lives. Although the scale seemed appropriate for patients, the patients complained that the battery of tests was too long. Thus, we decided to drop this measure from the study.

A feasibility study allowed program developers and researchers to gather data about a new program to refine it and the associated research measures and protocol. Our feasibility evaluation was organized around five areas: recruitment, retention, measures, study protocol (for example, the number of sessions, the sites for the intervention), and study materials (bulletin boards and speakerphones). Each feasibility item was discussed and data were documented at monthly staff meetings, and minutes were kept of these meetings. In addition, during the final data collection session, participants were asked to comment on their experience in the project, especially their thoughts about the materials and services received and the measures used. Responses were recorded verbatim and later discussed and coded by the research staff.

Data Analyses

Data were managed and analyzed using SPSS (1999). We used t tests to examine differences between the control and intervention groups on baseline knowledge, self-efficacy, F-COPES, and BSI scores, with a < .05 significance level. We used the Wilcoxin signed-rank test to examine overtime change in these measures, also with a < .05 significance level. Although the small sample precluded correcting for multiple comparisons, we felt that our confidence in the worth of the intervention would be strengthened if the intervention group showed greater improvement on several outcomes. Feasibility data around the five areas were collated from the minutes of monthly staff meetings, data categories were confirmed, and coded comments were counted.

RESULTS

Intervention Effects

Baseline measures for patients were not significantly different. For family members, those in the control group had an unusually low mean baseline BSI score. Looking at changes over the three-month follow-up, the intervention group realized more improvements in outcome variables than did the control group (see Table 2). Women with cancer who received the intervention showed significant improvement in the F-COPES total score (p < .05) and on subscales measuring spiritual support (p < .05) and mobilizing the family to accept help (t9 < .05). These women also reported a significant decrease in BSI score (p < .05). Their family members also reported benefits, including significant increases in self-efficacy (p < .05), four of the five F-COPES subscales (/9 < .05), and the F-COPES total scores (p < .01).

Women with cancer in the control group did not show significant change on any indicators. Their family members showed significantly poorer scores on the F-COPES total score (p < .05) and the subscore measuring ability to mobilize family to accept help (p < .05). The mean BSI scores for family members in the control group was higher (worse) at three months, but this difference was not significant.

Feasibility Evaluation

Qualitative findings from staff and participants were useful in helping to evaluate the feasibility of this intervention for future research and its acceptability to this population. In terms of feasibility, this pilot study revealed recruitment to be a major constraint for future research with Native Hawaiian cancer patients, as it took 18 months to accrue 10 women for the study. Several factors interfered with recruitment, including potential participants "not feeling well enough to participate" and being "too busy." Most significantly, recruitment is constrained by the fact that Hawaii does not have a comprehensive cancer center that provides one-stop access to cancer care. Instead, cancer care is offered in multiple facilities, requiring researchers to recruit patients through individual physicians or through public media venues. Although several recruitment strategies were used to alert physicians and the public about the study, the majority (70 percent) of participants came to the study because "they knew someone who knew someone" involved in the research (see Table 3).

With regard to the measures, the majority of patients (60 percent) and family members (50 percent) indicated that there were too many to complete, even after we dropped the PAIS-SR from the test battery. The knowledge and self-efficacy tools developed for the project had high-moderate to high reliability; however, high mean baseline and follow-up scores on the knowledge test suggest that this tool needs to be refined. The F-COPES measure was acceptable to participants, and its use helped show change among participants in the expected direction. The BSI measure produced some unusually low baseline findings (0 at baseline and 25-60 at follow-up) for four family members in two different families, and highlighted the limitations of a small sample. In future research, a larger randomized sample would correct for this type of statistical fluke.

In terms of acceptability, participants who received the intervention provided concrete information with regard to what they felt were its strengths and what they found helpful. All intervention participants appreciated cultural tailoring of the curriculum and sessions (for example, the attention to family and intra family kuleana, the inclusion of Hawaiian graphics and proverbs in educational materials, the sharing of food, and the honoring of pule and ancestors as sources of spiritual support). Patients (67 percent) and "ohana (60 percent) felt they had developed close connections and personal relationships with the research team. They disclosed that the incorporation of "Hawaiian ways" increased their level of comfort with the study and was a major reason why they referred (or would refer) others to join the study.

Participants in the intervention group overwhelmingly indicated (80 percent to 100 percent) that family support was enhanced by training that taught them how to access information, communicate with health care providers, and renegotiate household duties. However, patients (83 percent) and "ohana (70 percent) felt that there were too many sessions, and that training in telephone and Internet access could be achieved in one session rather than two. In line with the number of sessions and the difficulties in getting family members together to attend all sessions, patients (67 percent) and 'ohana (60 percent) were grateful for the research team's flexibility in scheduling sessions on weekends and in the evenings. The majority of patients (83 percent) and 'ohana (70 percent) in the intervention group also appreciated receiving materials that supported the care of the cancer patient (for example, speakerphones and bulletin boards).

DISCUSSION

The growing body of literature on cancer survivorship recognizes that many patients confront their disease within the context of their families (Baider et al., 2000;Veach et al., 2002). The apex of the literature on family support indicates that when family members can successfully cope with the disease, the likelihood is the cancer patient will be reinforced in efforts to stay healthy (Blanchard, Ruckdeschel, & Albrecht, 1996; Bloom, 2000; Keller et al., 1996; Northouse, 1995).

Although the family may be the major resource for the cancer patient, it is evident that family members are in need of support as well. Many of the concerns of family members reflect the need for information about the disease and its treatment, for assistance in learning ways to provide tangible assistance to the cancer survivor, and for learning how to deal with the emotional concerns around the loss of life. For a special population, such as Native Hawaiians, these needs are accentuated because of their rates of high mortality and low survival. Furthermore, the cultural emphasis on the 'ohana suggests that a family-oriented intervention would best serve this population. In this pilot study, we developed and established the feasibility and potential effectiveness of a culturally tailored intervention designed to enhance family support for Native Hawaiian women with cancer.

It was gratifying that cancer patients and their family members in the intervention group showed improvement on more outcome variables than did patients and families in the control group, despite the fact that this pilot study was constrained by a small sample and the different amounts of time required for the control and intervention groups. Advances for the intervention group were noted especially in self-efficacy and coping. Improved self-efficacy likely reflected the heavy emphasis in the training on skills development in the areas of information seeking and communication. For example, the research staff spent time explaining how new skills are performed, coaching families while they tried out these skills in role-play situations, and in later sessions asking participants to give examples of how they used new skills.

The intervention group realized increased coping skills, especially in the areas of spiritual support and mobilizing the family to accept help. Whereas the importance of spiritual support for cancer patients in general has been documented (Carr & Morris, 1996; Jenkins & Pargament, 1995), its centrality for Native Hawaiian cancer patients is newly emerging (Braun et al., 2002). For many Native Hawaiian cancer patients and their "ohana, spiritual beliefs and practices provide the strength to confront the disease. Recognizing the important role of spirituality as a cultural characteristic for Native Hawaiians, efforts were made to tailor the intervention to include spiritual practices, such as prayers, introductions using genealogy, and invocation of ancestors for strength. Inherent in the Native Hawaiian view of spirituality is the affirmation of the role and responsibility of the 'ohana in providing assistance to "ohana members when confronting problems such as cancer. Thus, the cultural reliance on family support may precipitate its "mobilization" when confronting issues, and it is plausible that Native Hawaiians may use resources such as the 'ohana and spirituality before external resources such as those sponsored by hospitals and other health care organizations (Gotay & Lau, 2003).

The improvement in BSI scores for Native Hawaiian cancer patients suggests the intervention helped patients manage their stress and reduce their distress levels. In contrast, BSI scores did not change for family members in the intervention group and appeared higher for family members in the control group at the three-month follow-up. This may reflect family members' perceptions of increased responsibility in helping their loved ones deal with the disease. Literature indicates that for some caregivers the added demands of the illness create psychological distress levels that are often as high as, and on some occasions higher than, the patients' (Northouse, 1995). Although this interpretation is feasible for the intervention group, unusually low BSI baseline scores for two control families highlight the limitations of a small sample and suggest that future research in which there is a larger randomized sample is needed to minimize statistical anomalies.

Future examination of this intervention's effectiveness will require a larger sample. Recruiting Native Hawaiians to research, especially in the absence of a centralized cancer care program in the state, presents a challenge to investigators in Hawai'i. In this pilot study, conventional recruitment strategies, such as printed advertisements and telephone hotlines, were not very helpful, and only when personal contacts were made (for example, through providers and face-to-face contact) were we able to recruit participants. Gotay et al. (2000) suggested that using existing social networks and family constellations to promote cancer interventions can be a powerful tool for an ethnic minority population such as Native Hawaiians. Due to the centrality of social networks in Native Hawaiian culture (Pukui et al., 1972), it is probable that information relayed by this venue may be more persuasive than that presented in more impersonal brochures and newspaper advertisements (Gellert, Braun, Morris, & Starkey, 2006). Furthermore, the historical lack of culturally tailored interventions for this population suggests they are not yet familiar or fully aware of the benefits of participation (Gotay, 2000) and would be disinclined to participate unless encouraged by someone they knew and trusted. In future studies, we will continue to rely on multiple recruitment strategies but will emphasize the social network approach.

Data collected through this pilot study suggest ways in which the research tools and the intervention can be refined. For example, we saw very little change in knowledge among participants, due in part to high baseline knowledge scores. In refining the knowledge measure, items should be modified to relate directly to curricular content rather than to general cancer knowledge. In terms of the intervention, we learned that it easily could be streamlined from six sessions by merging the sessions on telephone and Internet access. Future research may focus on four to five sessions, thereby addressing participants' concerns about too many sessions and also serving to decrease the differences in the amounts of time for the control and intervention groups.

The findings of this study should be interpreted with caution in light of the limitations inherent in a feasibility study such as this one---small sample size, nonequivalent intervention and control conditions, and lack of a no-treatment control--thereby limiting the conclusions one can reach. Nevertheless, the findings suggest that culturally tailoring interventions to reflect Hawaiian values, protocols, and visuals may serve to increase their acceptability and perhaps their effectiveness. There is growing support for the development of culturally tailored interventions for different ethnic populations (Gotay & Lau, 2003: Kreuter, Lukwago, Bucholtz, Clark, & Sanders-Thompson, 2003), and this was reported by intervention participants as a major reason to recommend participation to others.

IMPLICATIONS FOR SOCIAL WORK

We believe the use of professional social workers in the design and delivery of the intervention was essential to its success. Social workers have a long history in working with families and are competent in conducting assessments of existing problems, implementing family support interventions, and evaluating the effectiveness of intervention models. The training provided in "ohana intervention is anchored in family practice models used by social workers that emphasize family strengths and resources, improve the capacity of families to cope with stress, and incorporate cognitive-behavioral paradigms for new learning. Furthermore, social workers in the health field are knowledgeable about social services in hospitals and clinics and can serve key roles in educating families about how to access health information, enhance familial relationships, and improve communication with physicians and other health care providers.

Social work is a profession dedicated to eliminating inequities that plague ethnic minority groups such as Native Hawaiians. In working with Native Hawaiian women who confront high cancer mortality, social workers must be cognizant of cultural factors that will enhance the delivery of services and reduce health disparities. Using a culturally tailored intervention that includes cultural values and practices may give greater meaning to the word survivorship for Native Hawaiian women and their 'ohana. Social workers also can play a role in designing and testing culturally tailored interventions when they are lacking. Also, attention to culture is critical in the conduct of research, as we learned that the bulk of Native Hawaiian participants in our research were recruited through social networks (rather than media announcements and physician referral). In both cases, our findings confirm the importance of NASW's Code of Ethics (2000),which espouses the ideal that "social workers should have a knowledge base of their clients' cultures and be able to demonstrate competence in the provision of services" (p. 9).

Original manuscript received May 16, 2005

Final revision received March 30, 2006

Accepted May 3, 2006

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Veach, T. A., Nicholas, D. R., & Barton, M.A. (2002). Cancer and the family life cycle. New York: Brunner-Routledge.

Noreen Mokuau, DSFF[, is professor of social work, School of Social Work, University of Hawai'i, 1800 East-West Road, Honolulu, Hawai'i 96822; e-mail: noreen@,hawaii. edu. Kathryn L. Braun, DPH, is professor of public health and social work, University of Hawai'i, and research director, 'Imi Hale Native Hawaiian Cancer Network. Linda K. Wong, MSW, is a social work fellow, Ke Ola Mamo, Native Hawaiian Health Care System. Paula Higuchi, MSFV,, is a partnership program manager, National Cancer Institute's Cancer Information Service, Cancer Research Center of Hawai'i, University of Hawai'i. Carolyn C. Gotay, PhD, is a professor, Cancer Research Center of Hawai'i, University of Hawai'i. This study was performed under the 'Imi Hale Native Hawaiian Cancer Network, funded by the National Cancer Institute (U O1-CA 8 610 5-0 3). The authors would like to acknowledge Joelene Lono, Noelani Napalapalai, Julie Oliveira, and Nalani Reid. Thanks also to Dr. Lynne Wilcox for assistance with the authors' randomization procedure and to Dr. Peter Holck for assistance with data analysis.

Table 1: Outline of the Intervention and Control Conditions

Session Intervention Condition Control Condition

Baseline * Culturally competent * Culturally competent
visit introduction introduction
 * Review of consent form * Review of consent
 * Collection of baseline data form
 * Review of culturally * Collection of
 tailored curriculum and baseline data
 readily available * Review of readily
 educational brochures in available educational
 lauhala (plant fiber) brochures
 basket * Questions and answers
 * Provision of family bulletin
 board to be used to track
 patient medications,
 appointments, family chores,
 and so forth
 * Questions and answers

2 * Review of previous session
 * Installation of conference
 telephone
 * Training in formulating
 questions
 * Training in accessing the
 CIS, with return
 demonstration
 * Questions and answers

3 * Review of previous session
 * Training in accessing Web-
 based cancer sources (using
 family's home computer or
 holding session at public
 library), including return
 demonstration
 * Questions and answers

4 * Review of previous session
 * Assistance defining and
 renegotiating roles to
 facilitate the cancer
 survivor's ability to
 comply with treatment
 recommendations
 * Logs and task sheets
 completed
 * Questions and answers

5 * Review of previous session
 * Training in communications
 * Assistance identifying
 communication challenges
 * Role-playing conversations
 with health care providers
 * Facilitation of intrafamily
 communication
 * Questions and answers

Three-month * Review of previous session * Review of previous
follow-up * Collection of three-month session
visit follow-up data * Collection of three-
 month follow-up data

Note: CIS=Cancer Information Service. National Cancer Institute.

Table 2: Outcome Variables at Baseline and Three-Month Follow-up

 Cancer Patients
 (n = 10)

 Intervention Control
Variable (n = 6) (n = 4)

Knowledge
 Baseline 12.00 12.00
 Three-month follow-up 13.00 11.25
Self-efficacy
 Baseline 107.33 90.50
 Three-month follow-up 113.67 105.00
F-COPES
 Social Support subscale
 Baseline 33.33 29.25
 Three-month follow-up 36.50 33.00
 Reframing subscale
 Baseline 34.50 34.75
 Three-month follow-up 35.17 36.75
 Spiritual Support subscale
 Baseline 19.50 19.50
 Three-month follow-up 22.67# * 20.00
 Mobilizing Family to
 Accept Help subscale
 Baseline 13.67 16.25
 3-month follow-up 18.00# * 16.25
 Passive Appraisal
 subscale (reverse
 scored)
 Baseline 13.67 12.75
 Three-month follow-up 12.00 11.75
 Total
 Baseline 114.17 110.00
 Three-month follow-up 125.17# * 113.75
BSI
 Baseline 26.67 36.75
 Three-month follow-up 17.00# * 36.25

 Family Members
 (n = 18)

 Intervention Control
Variable (n = 10) (n = 8)

Knowledge
 Baseline 12.20 11.25
 Three-month follow-up 13.00 12.50
Self-efficacy
 Baseline 88.20 101.63
 Three-month follow-up 109.20# * 98.38
F-COPES
 Social Support subscale
 Baseline 30.10 26.50
 Three-month follow-up 35.40# * 26.63
 Reframing subscale
 Baseline 31.80 32.77
 Three-month follow-up 34.70# * 30.13
 Spiritual Support subscale
 Baseline 19.50 15.38
 Three-month follow-up 21.60# * 14.75
 Mobilizing Family to
 Accept Help subscale
 Baseline 14.10 16.13
 3-month follow-up 17.30# * 13.13# *
 Passive Appraisal
 subscale (reverse
 scored)
 Baseline 14.50 15.63
 Three-month follow-up 12.40 15.25
 Total
 Baseline 109.70 106.88
 Three-month follow-up 121.40# ** 99.50# *
BSI
 Baseline 32.00 7.50
 Three-month follow-up 39.00 28.25

Note: F-COPES = Family Crisis-Oriented Personal Evaluation
Scale; BSI = Brief Symptom Inventory. Numbers in bold type
indicate an improved score. The Wilcoxin signed-rank test
was used.

* p < .05. ** p < .07.

Note: Numbers in bold type indicate an improved score is indicated
with #.

Table 3: Feasibility Evaluation

Factor Condition

 Intervention and Control Conditions (a)

Recruitment * 70% of patients came to the study through word
 and attrition of mouth and physician referral, and none
 responded to media announcements or brochures.

 * Once enrolled, no one dropped out.

Measures * 60% of patients and 50% of family members
 complained about number of tools.

 * No difficulties were reported for completing
 the knowledge, self-efficacy, and F-COPES
 measures.

 * High mean baseline and follow-up scores on the
 knowledge test suggest this tool needs to be
 refined.

 * PALS-SR measure dropped after first four
 families complained of its inappropriateness for
 family members and burden on patients.

 * BSI: 62% of family members in the control
 group reported no or few symptoms at baseline
 but many symptoms at follow-up.

 Intervention Condition Only (b)

Cultural * 100% of patients and family members
 relevance appreciated attention to Hawaiian values and
 practices throughout the intervention!

 * 100% of patients and family members
 appreciated the starting of each session with
 prayer.

 * 67% of patients and 60% of family members
 valued the close connections and personal rela-
 tionships developed with the research team.

 * 67% of patients and 80% of family members
 appreciated the cultural tailoring of the
 curriculum.

Study protocol * 100% of patients and 80% of family members
 and materials felt that learning to access CIS and Web-based
 cancer sources was helpful.

 * 83% of patients and 90% of family members felt
 the session on communication skills was helpful.

 * 83% of patients and 80% of family members
 felt the session on renegotiating roles was
 helpful.

 * 83% of patients and 70% of family members felt
 sessions 2 and 3 could be combined.

 * 83% of patients and 70% of Family members
 appreciated receiving the speakerphone and bul-
 letin board.

 * 67% of patients and 60% of family members
 appreciated the flexibility in accommodating
 family schedules.

Note: F-COPES = Family Crisis-Oriented Personal Evaluation Scale;
PAIS-SR = Psychosocial Adjustment to Illness Scale-Self-Report;
BSI = Brief Symptom Inventory; CIS Cancer Information Service,
National Cancer Institute.

(a) Cancer patients: n = 10; family members: n = 18.

(b) Cancer patients: n= 6; family members: n = 10.