Randomized trial of a question prompt list to increase patient active participation during interactions with black patients and their oncologists.

OBJECTIVE: Communication during racially-discordant interactions is often of poor quality and may contribute to racial treatment disparities. We evaluated an intervention designed to increase patient active participation and other communication-related outcomes during interactions between Black patients and non-Black oncologists. METHODS: Participants were 18 non-Black medical oncologists and 114 Black patients at two cancer hospitals in Detroit, Michigan, USA. Before a clinic visit to discuss treatment, patients were randomly assigned to usual care or to one of two question prompt list (QPL) formats: booklet (QPL-Only), or booklet and communication coach (QPL-plus-Coach). Patient-oncologist interactions were video recorded. Patients reported perceptions of the intervention, oncologist communication, role in treatment decisions, and trust in the oncologist. Observers assessed interaction length, patient active participation, and oncologist communication. RESULTS: The intervention was viewed positively and did not increase interaction length. The QPL-only format increased patient active participation; the QPL-plus-Coach format decreased patient perceptions of oncologist communication. No other significant effects were found. CONCLUSION: This QPL booklet is acceptable and increases patient active participation in racially-discordant oncology interactions. Future research should investigate whether adding physician-focused interventions might improve other outcomes. PRACTICE IMPLICATIONS: This QPL booklet is acceptable and can improve patient active participation in racially-discordant oncology interactions.

The National Cancer Institute's Community Networks Program Initiative to Reduce Cancer Health Disparities: Outcomes and Lessons Learned.

BACKGROUND: We describe reach, partnerships, products, benefits, and lessons learned of the 25 Community Network Programs (CNPs) that applied community-based participatory research (CBPR) to reduce cancer health disparities. METHODS: Quantitative and qualitative data were abstracted from CNP final reports. Qualitative data were grouped by theme. RESULTS: Together, the 25 CNPs worked with more than 2,000 academic, clinical, community, government, faith-based, and other partners. They completed 211 needs assessments, leveraged funds for 328 research and service projects, trained 719 new investigators, educated almost 55,000 community members, and published 991 articles. Qualitative data illustrated how use of CBPR improved research methods and participation; improved knowledge, interventions, and outcomes; and built community capacity. Lessons learned related to the need for time to nurture partnerships and the need to attend to community demand for sustained improvements in cancer services. IMPLICATIONS: Findings demonstrate the value of government-supported, community-academic, CBPR partnerships in cancer prevention and control research.

Barriers to cancer screening among Orthodox Jewish women.

The increased risk of genetic cancer mutations for Ashkenazi Jews is well known. However, little is known about the cancer-related health behaviors of a subset of Ashkenazi Jews, Orthodox Jews, who are a very religious and insular group. This study partnered with Rabbinical leadership and community members in an Orthodox Jewish community to investigate barriers to cancer screening in this community. Orthodox Jewish women were recruited to participate in focus groups designed to elicit their perspectives on barriers to cancer screening. A total of five focus groups were conducted, consisting of 3-5 members per group, stratified by age and family history of cancer. Focus groups were audio recorded and transcribed. Transcripts were coded using conventional content analysis. The resulting themes identified as barriers to cancer screening were: preservation of hidden miracles, fate, cost, competing priorities, lack of culturally relevant programming, lack of information, and fear. These results provide a unique perspective on barriers to cancer screening in a high risk but understudied population. Findings from this study may serve to inform culturally appropriate cancer education programs to overcome barriers to screening in this and other similar communities.

Unexpected findings in the exploration of African American underrepresentation in biospecimen collection and biobanks.

Racial/ethnic minorities are underrepresented in current biobanking programs. The current study utilized community-based participatory research to identify motivating factors and barriers that affect older African Americans' willingness to donate biospecimens. The standardized phone survey was administered to 78 African Americans who are 55 years old or older and live in the metropolitan Detroit area to assess their overall willingness to donate biospecimens and what factors were associated with it. The majority of the participants were willing to donate biospecimens, along with their personal information, for medical research and indicated that they did donate biospecimens when they were asked. However, African Americans were rarely asked to participate in biobanking programs. Furthermore, African Americans were not as concerned with research exploitation or as mistrusting of medical researchers as previously thought by the medical researchers. Even if African Americans were concerned over potential research exploitation or mistrust of medical researchers, these concerns or mistrust did not translate into an actual unwillingness to participate in biobanking programs. Rather, transparency in medical research and biobanking programs was more important when predicting African Americans' willingness to donate biospecimens for medical research. The findings suggest that underrepresentation of African Americans in current biobanking programs may not be due to their willingness/unwillingness to participate in such programs but rather due to a failure of medical researchers to approach them. Additionally, researchers and clinicians should focus on increasing the transparency of medical research and biobanking programs rather than changing African Americans' potential negative attitudes toward them.

A Typology of Communication Dynamics in Families Living a Slow-Motion Technological Disaster.

With increasing numbers of communities harmed by exposures to toxic substances, greater understanding of the psychosocial consequences of these technological disasters is needed. One community living the consequences of a slow-motion technological disaster is Libby, Montana, where, for nearly 70 years, amphibole asbestos-contaminated vermiculite was mined and processed. Former mine employees and Libby area residents continue to cope with the health consequences of occupational and environmental asbestos exposure and with the psychosocial challenges accompanying chronic and often fatal asbestos-related diseases (ARD). Nine focus groups were conducted with Libby area residents. Transcripts were analyzed to explore patterns of family communication about ARD. The following five patterns emerged: Open/Supportive, Silent/Supportive, Open/Conflictual, Silent/Conflictual, and Silent/Denial. Open/Supportive communication included encouragement to be screened for ARD, information about ARD and related disaster topics, and emotional support for people with ARD. In contrast, communication patterns characterized by silence or conflict have the potential to hinder health-promoting communication and increase psychological distress.

Community-level social support responses in a slow-motion technological disaster: the case of Libby, Montana.

Social support is an important resource for communities experiencing disasters. However, a disaster's nature (rapid- versus slow-onset, natural versus technological) may influence community-level responses. Disaster research on social support focuses primarily on rapid-onset natural disasters and, to a lesser extent, rapid-onset technological disasters. Little research has addressed slow-onset disasters. This study explores social support processes in Libby, MT, a community experiencing a "slow-motion technological disaster" due to widespread amphibole asbestos exposure. A comprehensive social support coding system was applied to focus-group and in-depth-interview transcripts. Results reveal that, although the community has a history of normative supportiveness during community and individual crises, that norm has been violated in the asbestos disaster context. Results are interpreted as a failure to achieve an "emergent altruistic community." Specifically, community-level conflict appears to interfere with previously established social support patterns. The observed phenomenon can be understood as the deterioration of a previously supportive community.

Predictors of decision making in families at risk for inherited breast/ovarian cancer.

OBJECTIVE: The purpose of this study was to identify factors associated with decision making about inherited cancer risk information within families and determine the interdependence between survivors' and relatives' decision making. DESIGN: A descriptive, cross-sectional design using a population-based sample of 146 dyads (N = 292) was used. Analyses included multilevel modeling using the Actor-Partner-Interdependence Model. MAIN OUTCOME MEASURES: Decision making regarding inherited cancer risk information. RESULTS: Several individual and family factors contributed toward survivors' and female relatives' decision making about inherited cancer risk information. Individual factors included the individual's perceptions of their family communication and cancer history. Family factors included survivors' and family members' age, communication and coping style that influenced the decision making of the other member of the dyad. Cancer worries and a monitoring coping style affected both seeking and avoiding decision making for survivors and relatives. CONCLUSIONS: In view of the importance of genetic information upon family health outcomes, it is critical to address both individual and family factors that may influence decision making about cancer risk information and surveillance options for all members within the family.

Concerns and recommendations regarding inherited cancer risk: the perspectives of survivors and female relatives.

BACKGROUND: Little research is available comparing differences in cancer risk perceptions between cancer survivors and family members at risk for hereditary breast/ovarian cancer. METHODS: Qualitative focus groups with survivor-female relative dyads (N = 39) were conducted. RESULTS: Important differences exist between the concerns of survivors and family members relevant to their cancer risk. Survivors focused on their own concerns from a personal perspective, whereas family members focused on the survivors' health and tended to suppress their own fears of cancer. Specific recommendations for inclusion of family members in cancer risk education are provided. CONCLUSIONS: Addressing family member differences is critical to tailor specific risk information inclusive of the entire family.

Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups.

Dramatic advances in cancer genetics and identification of germline mutations in cancer genes such as BRCA1 and BRCA2 have led to new options in genetic risk assessment for families with histories of breast and ovarian cancer. However, little research has been carried out with individuals and their families regarding how cancer risk information is communicated within families and factors that may affect individuals and family members making informed decisions about their health. This study explored participants' knowledge of cancer risk, their perceptions and concerns regarding inherited cancer risk information, family communication patterns, and factors that may affect their decision to learn about inherited cancer risk in their families. Nine focus groups of family dyads were conducted (N=39) consisting of breast or ovarian cancer patients and close female relatives. All transcribed interviews were analyzed using qualitative software. Key findings showed diversity in how families communicated and made decisions about their health, persistent worry for their families, lack of knowledge about inherited cancer, vigilance in watching their health, and barriers present in communicating about genetic risk. Results from this study support inclusion of family members in addressing inherited cancer risk information and contextual family factors critical to consider in potentially high risk families.

Promoting informed decision making: evaluating a community-based prostate health awareness program.

BACKGROUND: For health educators, the controversy surrounding routine prostate cancer screening provides curriculum development and delivery challenges. The purpose of this study was to evaluate a community-based prostate health awareness program. METHODS: Using a pretest-posttest design, participants were recruited from community-based organizations to assess the effectiveness of the program in the areas of knowledge gain, short-term intentions, and changing prostate health behaviors. RESULTS: Many of the participants reported having been tested for prostate cancer, yet there was a lower than expected pretest knowledge base. There were significant increases in knowledge on the posttest and some impact on short-term intentions and behavior. DISCUSSION: A community-based prostate health awareness program prior to the patient-physician encounter can assist health-care professionals in the education process and give men the tools to make an informed decision.

Evaluation of a preparatory community-based prostate health education program.

BACKGROUND: Medical organizations are divided on the issue of screening for prostate cancer, yet there is agreement that men should be educated about prostate health. Shared decision making involves patients and practitioners in this process, yet some men need preparatory education prior to the physician encounter. This study assessed the effectiveness of a community prostate health awareness program, focusing on men at risk for prostate cancer. METHODS: Participants were given a pretest and a posttest to assess knowledge gains and impact on short-term intentions to address their prostate health. RESULTS: There was a statistically significant increase in knowledge. Short-term intentions increased for those participants meeting the inclusion criteria. DISCUSSION: Community outreach programs remain an excellent vehicle to educate the public and complement the efforts of health care providers.