Adaptation of Consultation Planning for Native American and Latina Women With Breast Cancer
This research was supported by the California Breast Cancer Research Program under their Community Research Collaboration mechanism (grant 10AB-1600). The funding organization provided optional technical assistance related to conducting effective community-based participatory research. For this we are especially grateful to Mhel Kavanaugh-Lynch, Walter Price, Marj Plumb, and Natalie Collins. The funding organization had no other role in the design and conduct of the study; collection, management, analysis, or interpretation of the data; and preparation, review, or approval of the manuscript. The authors wish to thank the community members who participated in this study. We are also grateful to the staff of the Humboldt Community Breast Health Project and Mendocino Cancer Resource Center, especially Bojan Ingle, Mimi Johnson, Nancy Johnson, Rachel Kradin, and Mary Scott. Thanks also to Pam Derish for instruction on scientific writing, Martha Daschbach for assistance with regulatory compliance, and the staff at the H.M. Fishbon Memorial Library at the University of California, San Francisco, for their assistance with background research and literature searches. We are grateful to Sara Knight and Jon Showstack for their mentorship and guidance. For further information, contact: Jeffrey Belkora, Institute for Health Policy Studies, Box 0936, University of California, San Francisco, 3333 California Street, Suite 265, San Francisco CA 94118-1944; e-mail firstname.lastname@example.org.
ABSTRACT: Context:Resource centers in rural, underserved areas are implementing Consultation Planning (CP) to help women with breast cancer create a question list before a doctor visit. Purpose: To identify changes needed for acceptable delivery of CP to rural Native Americans and Latinas. Methods: We interviewed and surveyed 27 Native American and Latino key informants. We coded interviews thematically, and calculated summary statistics for the survey data. Findings: Native American and Latino respondents endorsed CP as culturally acceptable to their communities, while suggesting changes. Respondents also raised the topic of how to further support patients once they have successfully prepared a question list using CP. Conclusions: The resource centers implemented the requested changes.
Cancer patients meet with specialists to discuss difficult decisions about a potentially life-threatening diagnosis.1,2 Researchers have developed various interventions to assist patients in preparing for and participating in consultations about treatment, and have found that they increase the number and range of questions asked.3 Building on such proven approaches, we developed one such visit preparation intervention called Consultation Planning (CP). CP involves a trained facilitator prompting a patient for questions and concerns using open-ended probes and a checklist inspired by decision theory and social psychology.4 The facilitator, or Consultation Planner (CPer), summarizes the patient questions and concerns in a word-processed document and gives copies to the patient to use as a visual aid at the medical appointment.
Consultation Planning is described in more detail elsewhere4,5 and an instructional manual has been developed. Two rural community-based cancer resource centers have implemented CP within their programs.4 Program evaluations reveal high satisfaction and endorsement by the resource center clients.5 However, within these rural communities CP has been accessed primarily by white, English-speaking patients.
The resource centers want to expand their outreach programs to the Latino and Native American populations. However, neither CP nor any other visit preparation intervention has ever been adapted to the specific needs of people from these cultures. We hypothesized that changes would be required to the aims, settings, content, and delivery of CP in order to be culturally acceptable for rural Latinos and Native Americans.
Therefore, our study addressed the question: How should CP be modified to ensure that it is culturally acceptable to diverse people with breast cancer in rural, underserved Northern California?
We employed a community-based participatory research approach to conduct a formative, mixed methods study, which took place in Mendocino and Humboldt counties in Northern California in 2004 and 2005. The populations of these counties are rural, diverse, and medically underserved (Table S1, available online). The study was conducted by the University of California, San Francisco, the Mendocino Cancer Resource Center (MCRC), and the Humboldt Community Breast Health Project (HCBHP). MCRC and HCBHP are nonprofit community-based organizations, providing free information and support to people living with cancer, and raising funds from donations and grants.
We first asked the resource center advisory boards to nominate cultural advisers who were known to be active members of the Native American or Latino communities. We also used community networks to identify Latina and Native American women with breast cancer. The UCSF Committee on Human Research approved the study protocol, and study participants gave informed consent to participate in interviews. The interviews took place from November 2004 through October 2005.
The goal of the interviews, conducted by a research assistant, was to elicit the participants’ views of the strengths and weaknesses of CP relative to their needs, and to capture suggestions for improvement. The study team drafted a semi-structured interview guide based on the Critical Incident Technique6 (Table S2, available online). We used a Spanish interpreter during interviews with 2 Spanish monolingual subjects.
The research assistant listened to audiorecordings of the interviews and abstracted themes related to critical success factors, barriers, or suggested modifications. The research assistant and academic principal investigator grouped the themes into categories reflecting the aims, settings, content, and delivery felt to be appropriate for the intervention. The entire study team, including resource center staff members, reviewed the themes and categories, resolving differences in interpretation through discussion.
For the 12 participants with breast cancer, we administered the Acceptability of CP survey, adapted from a previously published Acceptability of Decision Aid Survey.7
Study participants included 15 cultural advisers (9 Latino and 6 Native American) and 12 women with breast cancer (6 Latina, 6 Native American) (Tables S3 and S4, available online).
Overall, Latino and Native American participants endorsed the aims and content of CP within these communities. A Native American worker at an Indian Health Services clinic captured the overall sense among our cultural advisers when she said, “Consultation Planning is consistent with our mind/body/spirit approach to healing. Plus, it looks scientific so the doctors will go along with it!”
Other success factors included the amount of time available for conducting CP, and the intervention's attention to emotional needs, people and relationships. These endorsements were also reflected in survey responses that exceeded our pre-established two-thirds threshold for accepting CP: all 12 respondents rated it useful; 83% and 75% rated the length and number of topics as “just right,” respectively.
While respondents endorsed the aims and content of CP, they cited some barriers associated with its setting and delivery. Some cited language and literacy level. Others cited lack of access to transportation as impeding people's ability to get to an in-person CP session.
Accordingly, respondents suggested modifications to the setting and delivery of CP. Examples of suggestions related to setting included: making the resource centers more child-friendly, and having minority cultures and language interpreters represented in the resource center staff and volunteers. Examples of suggestions relating to program delivery included: facing the patient straight-on; allowing time for the patient to reflect; and making sure the client knows the service is confidential (Table 1).
Table 1. Summary of Recommended Changes to CP Based on Study Findings*
|1. Hires Native American or Latino resource center staff, and recruits and trains Native American or Latino volunteers to perform CP with clients matched on community affiliation.|
|2. Makes visible any Native American or Latino experiences with CP, such as testimonials from past clients or endorsements.|
|3. Partners with Indian Health Services and Latino community health agencies.|
|4. Recruits and trains multilingual staff and volunteers to serve as medical interpreters.|
|5. Inquires about client needs other than CP.|
|6. Arranges for interpreter if client requires translation.|
|7. Provides gas money, a bus pass or a ride if client requires transportation.|
|8. Provides or arranges for childcare when needed.|
|9. Provides quiet space free of interruptions for staff member.|
|10. Has drinks and/or snacks available for the client.|
|1. Asks which other family members should be included or excluded from the CP session.|
|2. Discloses some personal information about family and cancer experience.|
|3. Invites silence as well as thinking out loud, whenever each is most comfortable for the client.|
|4. Negotiates in advance what to do if the client becomes emotionally upset (eg, take a break).|
|5. Maximizes eye contact, if necessary forgoing the computer (can do word-processing later based on handwritten notes).|
|6. Asks the client what size words (eg, complex, detailed or simple, high level) she would want to hear from her doctor.|
|7. Ask the client to alert the staff member if she needs to take a break.|
The resource centers addressed these suggestions through changes in their organizational infrastructure, plans, policies, and training programs. For example, one resource center trained 25 bilingual volunteers to become certified English/Spanish medical interpreters.
Finally, respondents raised questions about whether and how medical providers would address the question list generated by the CP intervention. For example, they suggested that patients need to feel supported in using the CP question list effectively with their providers.
We found that the aims and content of the CP intervention were culturally acceptable to Latino and Native American patients and representatives in a rural, diverse setting. This finding is significant in that CP was originally developed based on a needs assessment conducted in an urban setting featuring a predominantly white population.4 It now appears that people's desire to formulate their questions and concerns for physicians, and their appreciation for skillful assistance in doing so, may transcend differences in culture.
A strength of our study is that it reflected a productive academic-community partnership. The topic, approach, methods, analysis, and conclusions reflected the will of the community, as interpreted by the leaders and staff of 2 grassroots agencies who consulted their communities during 11 planning and dissemination meetings. A limitation is that, given this was a pilot study, we did not have the resources to incorporate all the validity checks that often accompany use of the Critical Incident Technique.8
Our results support and extend prior work by other researchers. For example, a report on cultural competency materials developed for public health surveyors working with American Indian and Alaskan natives living in California describes the importance of understanding the “long pause.”9 This is consistent with our finding on the value of silence to Native Americans engaged in CP and needing to reflect quietly before answering a CP prompt. In regards to the Latino community, previous work has focused on addressing linguistic barriers and involving bilingual and bicultural health professionals as well as including family members.10 Our study extends this finding to Hispanic women with breast cancer in rural Northern California.
Implications for Research and Practice This study provides support for the suitability of a participatory approach to assessing and meeting the needs of culturally diverse populations, previously used for promoting culturally competent care9–11 and creating or adapting specific programs for Latino or Native American populations.12–14
In practice, agencies already delivering CP, or similar interventions, can be more confident that the aims and contents of CP are culturally acceptable to rural Latinas and Native Americans. However, the setting and delivery may require adaptations such as those we have described. Resource centers and cancer navigation programs serving rural, diverse people with cancer may wish to implement CP or a similar intervention to help program participants meet their needs to gather information and participate in treatment decisions.