LGBTQ+ cancer: priority or lip service? A qualitative content analysis of LGBTQ+ considerations in U.S. state, jurisdiction, and tribal comprehensive cancer control plans.

The National Comprehensive Cancer Control Program, a Centers for Disease Control and Prevention funded program, supports cancer coalitions across the United States (US) in efforts to prevent and control cancer including development of comprehensive cancer control (CCC) plans. CCC plans often focus health equity within their priorities, but it is unclear to what extent lesbian, gay, bisexual, transgender, queer/questioning, plus (LGBTQ+) populations are considered in CCC plans. We qualitatively examined to what extent LGBTQ+ populations were referenced in 64 U.S. state, jurisdiction, tribes, and tribal organization CCC plans. A total of 55% of CCC plans mentioned LGBTQ+ populations, however, only one in three CCC plans mentioned any kind of LGBTQ+ inequity or LGBTQ+ specific recommendations. Even fewer plans included mention of LGBTQ+ specific resources, organizations, or citations. At the same time almost three fourths of plans conflated sex and gender throughout their CCC plans. The findings of this study highlight the lack of prioritization of LGBTQ+ populations in CCC plans broadly while highlighting exemplar plans that can serve as a roadmap to more inclusive future CCC plans. Comprehensive cancer control plans can serve as a key policy and advocacy structure to promote a focus on LGBTQ+ cancer prevention and control.

From study plans to capacity building: a journey towards health equity in cancer survivorship.

This article highlights the importance of pausing and reflecting on one's motivation, capacity, and positionality when engaging in health equity research and encourages researchers to engage in critical self-reflection and contribute to the ongoing dialogue on the ethical conduct of health equity-focused cancer research. In response to the urgent need to address health disparities and improve health equity in cancer survivorship care, the Cancer Prevention and Control Research Network (CPCRN) Survivorship workgroup discussed developing a study focused on understanding how racism impacts patient engagement in cancer survivorship care. However, during the study's development, the workgroup recognized limitations in research team composition and infrastructure. The workgroup engaged in critical self-reflections, individually and collectively, leading to the halting of the research study. Consequently, they redirected their efforts towards strengthening the necessary infrastructure for conducting such research, including diverse investigator representation and equitable partnerships with cancer survivors. The description of this process, along with suggestions for reflection, may be helpful and informative to other researchers and research networks seeking to center marginalized voices and work in partnership to address healthcare and health equity.

Principles to operationalize equity in cancer research and health outcomes: lessons learned from the cancer prevention and control research network.

Reflecting their commitment to advancing health equity, the Cancer Prevention and Control Research Network (CPCRN) established a Health Equity Workgroup to identify and distill guiding principles rooted in health equity, community-engaged participatory research (CBPR), social determinants of health, and racial equity frameworks to guide its collective work. The Health Equity Workgroup utilized a multi-phase, participatory consensus-building approach to: (1) identify recurrent themes in health and racial equity frameworks; (2) capture perspectives on and experiences with health equity research among CPCRN members through an online survey; (3) engage in activities to discuss and refine the guiding principles; and (4) collect case examples of operationalizing equity principles in cancer research. Representatives from all CPCRN centers endorsed nine core principles to guide the Network's strategic plan: (1) Engage in power-sharing and capacity building with partners; (2) Address community priorities through community engagement and co-creation of research; (3) Explore and address the systems and structural root causes of cancer disparities; (4) Build a system of accountability between research and community partners; (5) Establish transparent relationships with community partners; (6) Prioritize the sustainability of research benefits for community partners; (7) Center racial equity in cancer prevention and control research; (8) Engage in equitable data collection, analysis, interpretation, and dissemination practices; and (9) Integrate knowledge translation, implementation, and dissemination into research plans. Dissemination products, such as toolkits and technical assistance workshops, reflecting these principles will foster knowledge transfer to intentionally integrate health and racial equity principles in cancer prevention and control research.

Identifying opportunities for collective action around community nutrition programming through participatory systems science.

PURPOSE: To apply principles of group model building (GMB), a participatory systems science approach, to identify barriers and opportunities for collective impact around nutrition programming to reduce cancer risk for immigrant communities in an urban environment. METHODS: We convened four in-person workshops applying GMB with nine community partners to generate causal loop diagrams (CLDs)-a visual representation of hypothesized causal relationships between variables and feedback structures within a system. GMB workshops prompted participants to collaboratively identify programmatic goals and challenges related to (1) community gardening, (2) nutrition education, (3) food assistance programs, and (4) community-supported agriculture. Participants then attended a plenary session to integrate findings from all workshops and identify cross-cutting ideas for collective action. RESULTS: Several multilevel barriers to nutrition programming emerged: (1) food policies center the diets and practices of White Americans and inhibit culturally tailored food guidelines and funding for culturally appropriate nutrition education; (2) the lack of culturally tailored nutrition education in communities is a missed opportunity for fostering pride in immigrant food culture and sustainment of traditional food practices; and (3) the limited availability of traditional ethnic produce in food assistance programs serving historically marginalized immigrant communities increases food waste and worsens food insecurity. CONCLUSION: Emergent themes coalesced around the need to embed cultural tailoring into all levels of the food system, while also considering other characteristics of communities being reached (e.g., language needs). These efforts require coordinated actions related to food policy and advocacy, to better institutionalize these practices within the nutrition space.

Identifying research practices toward achieving health equity principles within the Cancer Prevention and Control Research Network.

PURPOSE: Although there is national recognition for health equity-oriented research, there is limited guidance for researchers to engage partnerships that promote health equity in cancer research. The Cancer Prevention and Control Research Network's (CPCRN) Health Equity Work Group developed a toolkit to guide researchers in equitable collaborations. METHODS: The CPCRN's Health Equity Work Group collectively outlined health and racial equity principles guiding research collaborations with partners that include communities, community-based organizations, implementing partners in the clinical setting including providers and health care organizations, and policy makers. Using a network-wide survey to crowdsource information around ongoing practices, we leveraged and integrated the network's experience and collaborations. RESULTS: Data from the survey formed the preliminary basis for the toolkit, with a focus on sharing fiscal resources with partners, training and capacity building, collaborative decision-making, community-driven research agenda setting, and sustainability. The final toolkit provides reflection considerations for researchers and collated exemplary resources, supported by the contemporary research. CONCLUSIONS: The toolkit provides a guide to researchers at all experience levels wanting to engage in equitable research collaborations. Future efforts are underway to evaluate whether and how researchers within and outside CPCRN are able to incorporate these principles in research collaborations.

A Culturally Adapted Breast and Cervical Cancer Screening Intervention Among Muslim Women in New York City: Results from the MARHABA Trial.

We examine the efficacy of MARHABA, a social marketing-informed, lay health worker (LHW) intervention with patient navigation (PN), to increase breast and cervical cancer screening among Muslim women in New York City. Muslim women were eligible if they were overdue for a mammogram and/or a Pap test. All participants attended a 1-h educational seminar with distribution of small media health education materials, after which randomization occurred. Women in the Education + Media + PN arm received planned follow-ups from a LHW. Women in the Education + Media arm received no further contact. A total of 428 women were randomized into the intervention (214 into each arm). Between baseline and 4-month follow-up, mammogram screening increased from 16.0 to 49.0% in the Education + Media + PN arm (p < 0.001), and from 14.7 to 44.6% in the Education + Media arm (p < 0.001). Pap test screening increased from 16.9 to 42.3% in the Education + Media + PN arm (p < 0.001) and from 17.3 to 37.1% in the Education + Media arm (p < 0.001). Cancer screening knowledge increased in both groups. Between group differences were not statistically significant for screening and knowledge outcomes. A longer follow-up period may have resulted in a greater proportion of up-to-date screenings, given that many women had not yet received their scheduled screenings. Findings suggest that the educational session and small media materials were perhaps sufficient to increase breast and cervical cancer screening among Muslim American women. ClinicalTrials.gov NCT03081507.

Family Sex Communication Among Arab American Young Adults: A Mixed-Methods Study.

There is a significant gap in understanding the sexual health of Arab Americans. The purpose of this study is to explore family sex communication among Arab American young adults and its association with gender and sexual attitudes. We used a parallel mixed methods design and administered an electronic survey (N = 100); a subsample of 24 participants participated in five focus groups. We observed convergence in the findings. Participants reported rare occurrences of family sex communication, with women reporting less comfort than men. Family sex communication was often "unspoken," and reinforced prevailing social norms. Gender differences were reported based on sex communication topics. The most common source of sex information was peers/friends. Focus group participants perceived their parents to be more conservative and less knowledgeable about sex than they were. Future research on strategies to bridge generational differences is needed to promote family-based sex communication, given the multiple teachable moments at home.

Perspectives of multisectoral community stakeholders on Arab American cancer patients' needs and suggested interventions.

BACKGROUND: Multilevel barriers can arise after a cancer diagnosis, especially in underserved racial/ethnic minority patient populations, raising the need for diverse and contextually adapted interventions. However, limited data exists on Arab American (ArA) cancer patients' needs, partly due to their racial/ethnic misclassification as Whites. This study leveraged the perspectives of cancer survivors and community stakeholders (i.e., healthcare and community leaders) to identify ArA cancer patients' needs, as well as their preferred intervention strategies to address them. METHODS: Using a hybrid inductive-deductive content analysis approach, we analyzed qualitative data from interviews with 18 ArA community stakeholders recruited through community partners in Chicago. RESULTS: Participants associated cancer stigma to ArA patients' concealment of their diagnosis and aversion to cancer support groups. Economic and language barriers to treatment were emphasized. A lack of resources for ArA cancer patients was also noted and was partly attributed to their misclassification as White. In response to these needs, participants suggested peer mentorship programs to overcome privacy concerns, hospital-based patient navigation to address language and economic barriers in healthcare, diversification of the healthcare workforce to overcome language barriers, and community coalitions to recognize ArA as an ethnic group and increase cancer support resources. Such advocacy will be essential to accurately characterize patients' cancer burden and obtain funding to support community programs and resources. CONCLUSION: Our findings suggest that multilevel interventions at the patient, healthcare, and community levels are needed to address ArA cancer patients' needs.

Multilevel determinants of financial toxicity in breast cancer care: perspectives of healthcare professionals and Latina survivors.

PURPOSE: Financial toxicity is a multidimensional side effect of cancer treatment. Yet, most relevant research has focused on individual-level determinants of financial toxicity and characterized only patient perspectives. This study examined the multilevel determinants of financial toxicity from the perspectives of Latina breast cancer survivors and healthcare professionals. METHODS: We analyzed qualitative data from focus groups with 19 Latina breast cancer survivors and interviews with 10 healthcare professionals recruited through community partners and venues in Chicago. RESULTS: At the individual-level, the lack of knowledge and prioritization regarding financial aspects of care (e.g., costs of treatment, insurance coverage) was identified as important determinants of financial toxicity. However, healthcare professionals emphasized the need for early financial planning, while survivors prioritized survival over financial concerns immediately after diagnosis. At the interpersonal-level, social networks were identified as important platforms for disseminating information on financial resources. At the community-level, community norms and dynamics were identified as important barriers to seeking financial assistance. Access to culturally astute community-based organizations was considered one potential solution to eliminate these barriers. At the organizational/healthcare policy-level, financial assistance programs' restrictive eligibility criteria, lack of coverage post-treatment, limited availability, and instability were identified as major determinants of financial toxicity. CONCLUSION: Our findings suggest that multilevel interventions at the individual-, interpersonal-, community-, and organizational/healthcare policy-levels are needed to adequately address financial toxicity among Latina and other survivors from disadvantaged communities.

Health Assessment of the Arab American Community in Southwest Chicago.

Chicago is among the top five metropolitan areas in the United States where Arab Americans reside; however, we have little available data on their perceptions of personal or community health. We collected 200 community health surveys in collaboration with a community-based organization that serves mainly Arabs in Chicago's southwest suburbs. The survey evaluated perceived community and personal health. In a mostly female, married, and low-income sample, participants identified cancers, diabetes, and high blood pressure/cholesterol as the top three health problems, while alcohol abuse, drug abuse, and overweight/obesity as the top three risky behaviors within the community. Gender differences, age differences, and educational level differences were found on certain determinants of health regarding the health of the community, perceived health problems, and risky behaviors. Our data validates previous findings from the literature highlighting cancer, diabetes, and high blood pressure as health priorities among Arabs, but offers new insights into unidentified issues within the Arab American community in Southwest Chicago such as alcohol, drug abuse, and child neglect/abuse. Furthermore, our findings warrant the need for classifying Arabs as a separate minority population facing health disparities.

The Contested Whiteness of Arab Identity in the United States: Implications for Health Disparities Research.

In response to the Institute on Minority Health and Health Disparities' (NIMHD) new health disparities research framework, we call on the National Institutes of Health (NIH) to acknowledge Arabs in the United States as a health disparity population. Arab classification as White leads to their cultural invisibility and perpetuates a cycle of undocumented health disparities.We provide examples of how this contested identity reinforces challenges associated with identifying this population and contributes to enactments of structural violence and undocumented health disparities. Decades of research with Arabs in the United States provides consistent evidence that their health does not fit the health profile of White Americans and that Arabs do not benefit from Whiteness and White privilege associated with their White racial categorization. On the contrary, Arabs in the United States experience discrimination and health disparities that require urgent attention; this can be achieved only by identifying the population with a racial category other than White.We conclude with recommendations to NIH and NIMHD to revise their definition of health disparity populations to include Arabs in the United States.

Disaggregation of Race and Ethnicity Group Data: Research-to-Practice Issues in Clinical Environments.

This Viewpoint discusses the importance of accurately categorizing and collecting race and ethnicity data, matching self-identity with race and ethnicity labels, in an effort to quantify the extent of health disparities.

A Scoping Review of Cancer Interventions with Arab Americans.

This scoping review provides an overview of cancer interventions implemented with Arab Americans across the cancer control continuum, including an examination of outcomes and implementation processes. The search strategy included database searching and reviewing reference lists and forward citations to identify articles describing interventions with Arab adults living in the US, with no restrictions on date of publication or research methodology. The review included 23 papers describing 12 unique cancer interventions. Most interventions focused on individual-level determinants of breast and cervical cancer screening; used non-quasi-experimental research designs to evaluate intervention effectiveness; and demonstrated improvements in short-term cancer screening knowledge. Implementation processes were less commonly described. Most interventions were culturally and linguistically tailored to communities of focus; were delivered in educational sessions in community settings; engaged with the community mostly for recruitment and implementation; and were funded by foundation grants. Suggestions for research and intervention development are discussed.

The Health Needs of Sexual and Gender Minority Migrant Women in the United States: A Scoping Review.

Purpose: This scoping review characterizes the peer-reviewed evidence on the health of first-generation sexual and gender minority (SGM) migrant women to the United States and identifies research gaps and future priorities. Methods: On February 1, 2022, the following databases were searched: PubMed (MEDLINE), Embase, CINAHL Plus with Full Text, APA PsycINFO, and PAIS Index. Primary research studies based in the United States, in English, on first-generation SGM migrants (i.e., immigrants, refugees, asylum seekers) were included. Gray literature and review articles were excluded. Health outcome data were not extracted from nonbinary populations nor transgender men. Themes were generated using qualitative content analysis. Results: Thirty-three studies were reviewed, most were qualitative, and 11 focused on transgender women migrants (especially from Latin America), while only one was exclusively on sexual minority women (SMW) migrants. Premigration experiences of violence and discrimination were linked to high prevalence rates of post-traumatic stress disorder, depression, and anxiety. Postmigration stressors included lack of educational and employment opportunities, reduced access to social services, and experiences of stigma and discrimination, which were also associated with the development of depressive symptoms. Transgender women migrants reported not seeking formal medical care, given a lack of gender-affirming services and insurance resulting in reliance on unsafe informal care networks for hormone therapy and feminization procedures. Conclusion: Future interventions should focus on fostering social support networks of SGM migrant women to help improve their mental health outcomes. Research priorities should include studies on SMW migrants and more quantitative research that could identify additional health needs (i.e., sexual health) of SGM migrant women.

Making Oneself "Fit": Community Perspectives on Disaggregated Race and Ethnicity Data Collection and Reporting in Healthcare Settings.

Patient race/ethnicity data collection in most U.S. health systems abide by federal standards, determined by the federal Office of Management and Budget. Yet, decades of research show that reliance on these categories alone limits understanding of within-group health disparities, systematically erasing key groups from health data. Because granular race/ethnicity data is complex and patients may be hesitant to disclose this personal information, it is important for health leaders to consider community perspectives when making decisions about race/ethnicity data procedures. As such, this study uses community focus groups to understand: (1) how individuals representing different racial/ethnic identities perceive the collection of race/ethnicity in healthcare settings; (2) differences in opinions between disaggregated race/ethnicity data collection instruments and those using federal standards; and (3) recommended practices for collecting race/ethnicity from patients. Participants self-selected into 13 focus groups and one key informant interview based on the race/ethnicity with which they most closely identified. Audio recordings from these groups were transcribed and evaluated using thematic content analysis. Among the 83 total participants in this study, there was a strong preference for more flexible and specific options for self-identifying race/ethnicity in healthcare settings. Participants also felt comfortable disclosing granular race/ethnicity to health providers but expressed discomfort with disclosing this information for other purposes. Recommendations for healthcare leaders include ensuring patients receive detailed communication about race/ethnicity data use and purpose, allowing multiple category selection, keeping the list of disaggregated response options short so as to not overwhelm patients, and providing a free text option to ensure inclusivity.

Addressing Social Risks to Accelerate Health Equity in Cancer Prevention and Control.

Addressing social risks in cancer prevention and control presents a new opportunity for accelerating cancer health equity. As members of the American Society of Preventive Oncology (ASPO) Cancer Health Disparities Special Interest Group, we describe the current state of science on social risks in oncology research and practice. To reduce and eliminate the unjust burden of cancer, we also provide recommendations for multilevel research examining social risks as contributors to inequities and the development of social risks-focused interventions. Suggestions for research and practice are provided within levels of the socio-ecological model, including the interpersonal, organizational, community, and policy levels.

Cancer Screening, Knowledge, and Fatalism among Chinese, Korean, and South Asian Residents of New York City.

BACKGROUND: Asian New York City residents have the lowest cancer screening uptake across race and ethnicity. Few studies have examined screening differences across Asian ethnic subgroups in New York City. METHODS: Cross-sectional survey data were analyzed using multivariable logistic and multinomial regression analyses. Differences among Chinese, Korean, and South Asian adults in breast, cervical, and colorectal cancer screening uptake; breast and colorectal cancer screening knowledge; and cancer fatalism were examined. Associations between breast and colorectal cancer screening knowledge and their uptake were also assessed along with associations between cancer fatalism and breast, cervical, and colorectal cancer screening uptake. RESULTS: Korean women reported 0.52 times [95% confidence interval (CI), 0.31-0.89] lower odds of Pap test uptake compared with Chinese women; South Asian adults had 0.43 times (95% CI, 0.24-0.79) lower odds of colorectal cancer screening uptake compared with Chinese adults. Korean adults reported 1.80 times (95% CI, 1.26-2.58) higher odds of knowing the correct age to begin having mammograms compared with Chinese adults; South Asian adults had 0.67 times (95% CI, 0.47-0.96) lower odds of knowing the correct age to begin colorectal cancer screening compared with Chinese adults. Korean adults had 0.37 times (95% CI, 0.27-0.53) lower odds of reporting cancer fatalism compared with Chinese adults. CONCLUSIONS: Low cancer screening uptake among Asian American adults, low screening knowledge, and high cancer fatalism were found. Cancer screening uptake, knowledge, and fatalism varied by ethnic subgroup. IMPACT: Findings indicate the need for ethnicity-specific cultural and linguistic tailoring for future cancer screening interventions.

Understanding COVID-19 Risk Perceptions and Precautionary Behaviors in Black Chicagoans: A Grounded Theory Approach.

OBJECTIVES: To determine whether actual community-level risk for COVID-19 in the Black community influenced individual perceptions of community-level and personal risk and how self-assessment of personal risk was reflected in the adoption of COVID-19 precautionary behaviors. METHODS: Semistructured interviews were conducted with 20 Black Chicago adults from February to July 2021. A grounded theory approach was used for the qualitative analysis and initial, focused, and theoretical coding were performed. RESULTS: We developed a grounded model consisting of four major themes: (a) Pre-Existing Health Conditions; (b) Presence of COVID-19 Infection in Participant Social Network; (c) COVID-19-Related Information, Participant Trust, and Perceived Personal Risk; and (d) Perceived Higher Burden of COVID-19 in the Black Community. CONCLUSIONS: Higher perceptions of personal risk were shaped by pre-existing health conditions and experiences with COVID-19 in one's social network but were not influenced by perceived higher burden of COVID-19 in the Black community. POLICY IMPLICATIONS: Black adults' perceptions of their individual risk and precautionary behaviors were not congruent with public health data and recommendations. Therefore, COVID-19 messaging and mitigation should be informed by local community engagement and transparent communication.

A Community-Academic Partnership to Explore and Address Cancer Disparities in Southwest Chicago Arab Americans.

BACKGROUND: Despite the need to consider multiple sources of evidence to guide locally and culturally relevant interventions, few studies have documented the process by which evidence is integrated. OBJECTIVES: We leveraged a community-academic partnership to describe a participatory approach to integrating community and academic sources of evidence to inform cancer programming priorities in the Arab American (ArA) community in Southwest Chicago. METHODS: Informed by Intervention Mapping, this study comprised three phases led by community and academic partners: 1) qualitative assessment of cancer-related priorities through eight focus groups with 48 ArA community members, 2) a focused literature review to identify models of cancer interventions implemented with ArAs, and 3) integration of focus group and literature review findings and development of a strategy for a community-based cancer program administered by the community partner. RESULTS: Focus groups revealed attitudes and beliefs across the cancer control continuum. The literature review highlighted two cancer interventions utilizing education, community health workers, and patient navigation components. Through facilitated discussions with community partners, we integrated community and academic sources of evidence to develop a comprehensive cancer program plan that is informed by the data we generated as well as our community partners' preferences and organizational capacity. CONCLUSIONS: Our participatory approach for integrating community and academic sources of evidence generated a locally relevant strategy to address cancer burden in the ArA community in Chicago. We discuss the benefits and challenges of utilizing this approach in intervention development.