Social Support Needs of Minority Breast Cancer Patients: Significance of Racial Homogeneity and Kin Composition of Social Networks

Social support from family and friends assists breast cancer patients navigate a life crisis, but more needs to be understood about specific social network characteristics that can benefit breast cancer patients. To address this need, the primary aim of this study was to identify social network factors that facilitate or reduce social support. Given racially patterned gaps in social support among breast cancer patients, a secondary goal was to identify network characteristics that are linked to gaps in support. We examined these research questions using data from a sample of 915 breast cancer patients (NHWhite=373; NHBlack=377; Hispanic=165) and 4,021 of their network members. To improve on prior research, we collected detailed social network data using a personal-network measurement tool and assessed needed and received support on five support components. Study findings identified specific network characteristics that facilitate these social support components. Network size was associated with increased practical, informational, emotional, and spiritual support. Network density was associated with increased practical support. Racial homogeneity in networks were associated with reduced informational support while a higher number of daughters in support networks was associated with increased emotional support. Compared to NHWhite patients, NHBlack patients were more likely to experience inadequate practical and financial support. Additionally, compared to NHWhite patients, Hispanic patients were more likely to experience inadequate informational and emotional support. The study found that network density, racial homogeneity, and gender composition of NHWhite, NHBlack and Hispanic social networks contributed to the racially patterned disparities in social support. Findings in this study could inform interventions aimed at increasing social support through greater mobilization of existing network ties as well as policy-driven, formal community building initiatives aimed at replicating benefits of naturally occurring networks

What does it mean to be affiliated with care?: Delphi consensus on the definition of unaffiliation and specialist in sickle cell disease

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a SCD expert provider . In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an unaffiliated patient with SCD and to define an SCD specialist, as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is someone who has not been seen by a sickle cell specialist in at least a year. A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having knowledge means: being knowledgeable of the 2014 NIH Guidelines, Evidence-Based Management of SCD , trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years. The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care

Lung Cancer Screening and Epigenetics in African Americans: The Role of the Socioecological Framework

Lung cancer is the leading cause of cancer morbidity and mortality in the U.S. and racial/ethnic minorities carry the greatest burden of lung cancer disparities with African Americans (AAs) impacted disproportionately. Inequities in lung cancer health disparities are often associated with multiple bio-behavioral and socio-cultural factors among racial/ethnic minorities. Epigenetic research has advanced the understanding of the intersectionality between biological and socio-cultural factors in lung cancer disparities among AAs. However, gaps exist in the engagement of diverse populations in epigenetic lung cancer research, which poses a challenge in ensuring the generalizability and implementation of epigenetic research in populations that carry an unequal cancer burden. Grounding epigenetic lung cancer research within a socio-ecological framework may prove promising in implementing a multi-level approach to community engagement, screening, navigation, and research participation among AAs. The University of Illinois Cancer Center (UI Cancer Center) is employing an evidence–based (EB) model of community/patient engagement utilizing the socio-ecological model (SEM) to develop a culturally sensitive epigenetic lung cancer research program that addresses multiple factors that impact lung cancer outcomes in AAs. By implementing epigenetic research within a group of Federally Qualified Health Centers (FQHCs) guided by the SEM, the UI Cancer Center is proposing a new pathway in mitigating lung cancer disparities in underserved communities. At the individual level, the framework examines tobacco use among patients at FQHCs (the organizational level) and also tailors epigenetic research to explore innovative biomarkers in high risk populations. Interpersonal interventions use Patient Navigators to support navigation to EB tobacco cessation resources and lung cancer screening. Community level support within the SEM is developed by ongoing partnerships with local and national partners such as the American Lung Association (ALA) and the American Cancer Society (ACS). Lastly, at the policy level, the UI Cancer Center acknowledges the role of policy implications in lung cancer screening and advocates for policies and screening recommendations that examine the current guidelines from the United States Preventive Services Task Force (USPTF)

Low income African American women use of technology to acquire health information

Breast cancer is the second leading cause of death in low income minority women. These women are less educated about breast cancer, so it is important to understand the risk of developing breast cancer, family history, and preventable interventions. Minority women are less likely to get a mammograph screening; therefore, implementing interventions will increase mammograph adherence. Previous studies exhibited a relationship with text message reminders and increased mammograph screening, but rarely examined women using technology to search for breast cancer information on their own. The objectives of this study are to (1) analyze and compare results from two focus groups about how they obtain health information, (2) if they use technology to acquire health information such as breast cancer, and (3) identify age gaps related to accessing health information. Is technology beneficial to African American women for acquiring breast cancer information? To address this question, we conducted a mixed methods study. We measured differences using Chi-square test. Women responded to a questionnaire from a previous focus group. Their responses were analyzed and compared to the focus groups from Mercy Hospital. In the sample, there were no significant differences in age in how women access health information. However, women \u3c 40 preferred technology to access health information whereas women ≥40 preferred to received information from a physician. African American women health literacy increases when they use technology to access health information. Technology is becoming an important resource for African American women to understand health information and thus increase mammographic screening rates

Investigating The Association Between Social Disorganization, Health-Related Quality Of Life, And Prostate Cancer Diagnoses In African American Men

Currently, Prostate cancer is the number one cancer among all men in Illinois with 42,773 identified cases between 2002 and 2006 for all races (Illinois Department of Public Heath (IDPH), Illinois Cancer Registry, 2008). Additionally, African American men living in Cook County have the highest rate for all racial groups at 227.1 per 100,000 between 2002 and 2006 (IDPH, Illinois Cancer Registry, 2008). This proposed research attempts to identify any influences of social disorganization on health-related quality of life (HRQL) in African American men living in south suburban cook county in Illinois with Prostate Cancer diagnosis using the International Classification of Functioning, Disability and Health (ICF) to measure and map disability by zip code using Geographic Information System (GIS). The proposed research attempts to identify preventable risk factors during phase one and in phase develop a community intervention for men at risk for prostate cancer, by increasing HRQL of African American men with current diagnosis of prostate cancer

Creating a mobile device-based educational intervention for African American women with hereditary breast cancer risk

Background: Our foundational work found very low rates of attendance at a genetic counseling (GC) consultation among AA women with hereditary breast cancer (BC) risk who were referred for GC, and a strong desire among women and their primary care physicians (PCPs) for culturally sensitive educational material to help women understand the purpose of GC. We created a story-based educational intervention delivered on a mobile device platform that is designed to motivate AA women with familial BC risk to attend GC. Methods: Using an iterative process encompassing semi-structured, one-on-one interviews and group story circles with AA women referred for GC (primarily non-attenders), we identified themes that represent barriers and motivators to attendance for AA women. The storyline and educational content for the script were based on the themes identified. The script and artwork were tested with focus groups that included members of the target audience and key community stakeholders. We also conducted key informant interviews with PCPs providing care for AA women. Results: Findings from semi-structured interviews (N=20) were augmented with data collected from group story circle sessions with a subgroup of women who participated in the interviews (N=11). Nine themes emerged from the combined data and findings were used to create a story-based script. Focus groups conducted with community stakeholders and the target audience led to revision in the overall design and style of the intervention and additional content revisions. Additional findings from focus groups were presented and the completed educational video was previewed

What does it mean to be affiliated with care?: Delphi consensus on the definition of "unaffiliation" and "specialist" in sickle cell disease.

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a "SCD expert provider". In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an "unaffiliated patient" with SCD and to define an "SCD specialist," as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is "someone who has not been seen by a sickle cell specialist in at least a year." A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having "knowledge" means: being knowledgeable of the 2014 NIH Guidelines, "Evidence-Based Management of SCD", trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years." The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care

What does it mean to be affiliated with care?: Delphi consensus on the definition of “unaffiliation” and “specialist” in sickle cell disease

Accruing evidence reveals best practices for how to help individuals living with Sickle Cell Disease (SCD); yet, the implementation of these evidence-based practices in healthcare settings is lacking. The Sickle Cell Disease Implementation Consortium (SCDIC) is a national consortium that uses implementation science to identify and address barriers to care in SCD. The SCDIC seeks to understand how and why patients become unaffiliated from care and determine strategies to identify and connect patients to care. A challenge, however, is the lack of agreed-upon definition for what it means to be unaffiliated and what it means to be a “SCD expert provider”. In this study, we conducted a Delphi process to obtain expert consensus on what it means to be an “unaffiliated patient” with SCD and to define an “SCD specialist, ” as no standard definition is available. Twenty-eight SCD experts participated in three rounds of questions. Consensus was defined as 80% or more of respondents agreeing. Experts reached consensus that an individual with SCD who is unaffiliated from care is “someone who has not been seen by a sickle cell specialist in at least a year.” A sickle cell specialist was defined as someone with knowledge and experience in SCD. Having “knowledge” means: being knowledgeable of the 2014 NIH Guidelines, “Evidence-Based Management of SCD”, trained in hydroxyurea management and transfusions, trained on screening for organ damage in SCD, trained in pain management and on SCD emergencies, and is aware of psychosocial and cognitive issues in SCD. Experiences that are expected of a SCD specialist include experience working with SCD patients, mentored by a SCD specialist, regular attendance at SCD conferences, and obtains continuing medical education on SCD every 2 years.” The results have strong implications for future research, practice, and policy related to SCD by helping to lay a foundation for an new area of research (e.g., to identify subpopulations of unaffiliation and targeted interventions) and policies that support reaffiliation and increase accessibility to quality care