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

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

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