Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Deciphering the Signal From the Noise: Caregivers' Information Appraisal and Credibility Assessment of Cancer-Related Information Exchanged on Social Networking Sites.

With the rise in the use of the Internet for health-related purposes, social networking sites (SNSs) have become a prominent platform for cancer communication and information exchange. Studies of cancer communication on SNS have mostly focused on understanding the quantity, content, quality, and user engagement (eg, likes and comments) with cancer-related information on SNS. There is less of an understanding of when and why people coping with cancer turn to SNS for cancer-related information, and how users appraise the credibility of cancer-related information obtained on SNS. In this study, we use data from in-depth qualitative interviews with 40 primary caregivers of pediatric patients with cancer to examine how cancer caregivers engage in information appraisal and credibility assessment of cancer-related information obtained on SNS. Findings show that cancer caregivers turned to SNS for cancer-related information because information on SNS was immediate, targeted in response to specific caregiver questions and concerns, and tailored to the specific information needs of cancer caregivers. Cancer caregivers evaluated the credibility of cancer-related information obtained on SNS through assessment of the SNS user who posted the information, frequency the same information was shared, and external corroboration. Findings have important implications for cancer communication and information interventions and point to elements of SNS cancer communication that can be integrated into health professional-facilitated communication and cancer information strategies.

The treasure of now and an uncertain future: Delay discounting and health behaviors among cancer survivors.

BACKGROUND: The identification of new therapeutic targets to improve health behaviors among cancer survivors (CS) is likely to improve cancer treatment outcomes. Delay discounting (DD) rate is the degree to which one devalues rewards as a function of time to receipt. Lower DD rates (ie, prioritizing long-term over immediate rewards) are associated with healthier behaviors. CS often experience distress and thoughts of early mortality that can potentially shift priorities to the present and negatively impact DD rates, especially when newly diagnosed. Understanding relations between DD and health behaviors among CS will contribute to the examination of DD as a therapeutic target for improving health behaviors for CS. METHOD: CS (n = 1001) were recruited from a web panel and administered a web-based questionnaire. Multivariate models examined relations among DD rate, years since diagnosis, and 10 health behavior indicators. We hypothesized that 1) higher DD rates would be associated with fewer years since diagnosis, and 2) lower DD rates would be associated with healthier behaviors, moderated by years since diagnosis. RESULTS: In general, higher DD rates were associated with fewer years since diagnosis. Higher DD rates were associated with more alcohol consumption, cigarette smoking, other tobacco use, tanning booth use, and conversely, greater adherence to annual primary care visits. A significant interaction between DD rate and years since diagnosis was not found. CONCLUSION: Lower DD rates are associated with several important healthy lifestyle behaviors. DD rate is a promising therapeutic target for new interventions to improve multiple health behaviors among CS.

Is Cancer Information Exchanged on Social Media Scientifically Accurate?

Cancer patients and their caregivers are increasingly using social media as a platform to share cancer experiences, connect with support, and exchange cancer-related information. Yet, little is known about the nature and scientific accuracy of cancer-related information exchanged on social media. We conducted a content analysis of 12 months of data from 18 publically available Facebook Pages hosted by parents of children with acute lymphoblastic leukemia (N = 15,852 posts) and extracted all exchanges of medically-oriented cancer information. We systematically coded for themes in the nature of cancer-related information exchanged on personal Facebook Pages and two oncology experts independently evaluated the scientific accuracy of each post. Of the 15,852 total posts, 171 posts contained medically-oriented cancer information. The most frequent type of cancer information exchanged was information related to treatment protocols and health services use (35%) followed by information related to side effects and late effects (26%), medication (16%), medical caregiving strategies (13%), alternative and complementary therapies (8%), and other (2%). Overall, 67% of all cancer information exchanged was deemed medically/scientifically accurate, 19% was not medically/scientifically accurate, and 14% described unproven treatment modalities. These findings highlight the potential utility of social media as a cancer-related resource, but also indicate that providers should focus on recommending reliable, evidence-based sources to patients and caregivers.

Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook.

Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans' lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential similarity contained highly specialized health-related information, including information about health services use, symptom recognition, compliance, medication use, treatment protocols, and medical procedures. Parents also exchanged tailored emotional support through comparison, empathy, encouragement, and hope. Building upon previous research documenting that social media use can widen and diversify support networks, our findings show that cancer caregivers access specialized health-related informational and emotional support through communication with others who have experienced the same illness on personal Facebook pages. These findings have implications for health communication practice and offer evidence to tailor M-Health interventions that leverage existing social media platforms to enhance peer support for patients and caregivers.

Where people look for online health information.

OBJECTIVES: To identify health-related websites Americans are using, demographic characteristics associated with certain website type and how website type shapes users' online information seeking experiences. METHODS: Data from the Health Information National Trends Survey 4 Cycle 1 were used. User-identified websites were categorised into four types: government sponsored, commercially based, academically affiliated and search engines. Logistic regression analyses examined associations between users' sociodemographic characteristics and website type, and associations between website type and information search experience. RESULTS: Respondents reported using: commercial websites (71.8%), followed by a search engines (11.6%), academically affiliated sites (11.1%) and government-sponsored websites (5.5%). Older age was associated with the use of academic websites (OR 1.03, 95% CI 1.02, 1.04); younger age with commercial website use (OR 0.97, 95% CI 0.95, 0.98). Search engine use predicted increased levels of frustration, effort and concern over website information quality, while commercial website use predicted decreased levels of these same measures. DISCUSSION: Health information seekers experience varying levels of frustration, effort and concern related to their online searching. CONCLUSION: There is a need for continued efforts by librarians and health care professionals to train seekers of online health information to select websites using established guidelines and quality criteria.

Complementary and alternative medicine use among patients with thoracic malignancies.

PURPOSE: Complementary and alternative medicine (CAM) use has been increasing among cancer patients. This study characterizes the use of CAM among patients with thoracic malignancies. METHODS: This cross sectional study was conducted at a National Cancer Institute-designated comprehensive cancer center among adult patients diagnosed with thoracic malignancies. The primary outcome was a self-reported use of CAM, defined as the use of any type of CAM beyond routine vitamin/mineral supplementation alone. A logistic regression model was developed to explore predictors of CAM use. RESULTS: A total of 108 patients completed a standardized survey (59% response rate). Overall, 42% of respondents reported the use of at least one type of CAM. Users and non-users of CAM did not differ based upon demographics, diagnosis, staging, smoking status, quality of life, or perceived understanding of cancer diagnosis. In the multivariate analysis, patients who reported feeling fearful about their future were four times more likely to be CAM users when compared to those who did not specify this emotion (odds ratio=4.18; 95% CI=1.23-14.12; p=0.02). Commonly cited reasons for CAM use were to support one's self, boost immunity, and for improvements in emotional and/or spiritual well-being. CONCLUSIONS: Prevalence of CAM use among cancer patients in this study was similar to the general US population. Feeling fearful about the future was associated with CAM use. Results suggest that patients may be turning to CAM as a therapeutic adjunct to actively cope with emotional distress surrounding the cancer experience.

The relationship between socio-demographic characteristics, family environment, and caregiver coping in families of children with cancer.

The factors that influence caregiver coping mechanism preferences after a child's diagnosis with cancer are not fully understood. This study examines the relationship between caregivers' socio-demographic characteristics and the coping strategies they use to adapt to childhood cancer. Sixty caregivers of pediatric cancer patients completed a socio-demographic questionnaire, the Family Environment Scale, and the COPE inventory. There were no significant differences in family environment by income or education. Caregiver educational attainment was positively associated with use of planning and active coping styles, while income was not associated with caregiver coping style. Mothers were more likely than fathers to use active coping, instrumental support, religious coping, and emotional support. Men with lower education engaged in greater substance use coping and lower planning. The findings show that educational attainment and caregiver gender influence caregiver coping styles following a pediatric cancer diagnosis and suggest that educational attainment rather than financial resources drive the association between SES and coping. Programs that address educational gaps and teach caregivers planning and active coping skills may be beneficial for parents with lower educational attainment, particularly men.

Life Course Stage and Social Support Mobilization for End-of-Life Caregivers.

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

Use of social network analysis in the development, dissemination, implementation, and sustainability of health behavior interventions for adults: A systematic review.

Interest in conceptualizing, measuring, and applying social network analysis (SNA) in public health has grown tremendously in recent years. While these studies have broadened our understanding of the role that social networks play in health, there has been less research that has investigated the application of SNA to inform health-related interventions. This systematic review aimed to capture the current applied use of SNA in the development, dissemination, implementation, and sustainability of health behavior interventions for adults. We identified 52 articles published between 2004 and 2016. A wide variety of study settings were identified, most commonly in the US context and most often related to sexual health and HIV prevention. We found that 38% of articles explicitly applied SNA to inform some aspect of interventions. Use of SNA to inform intervention development (as opposed to dissemination, implementation, or sustainability) was most common. The majority of articles represented in this review (n = 39) were quantitative studies, and 13 articles included a qualitative component. Partial networks were most represented across articles, and over 100 different networks measures were assessed. The most commonly described measures were network density, size, and degree centrality. Finally, very few articles defined SNA and not all articles using SNA were theoretically-informed. Given the nascent and heterogeneous state of the literature in this area, this is an important time for the field to coalesce on terminology, measures, and theoretical frameworks. We highlight areas for researchers to advance work on the application of SNA in the design, dissemination, implementation and sustainability of behavioral interventions.

Social support, flexible resources, and health care navigation.

Recent research has focused attention on the role of patients' and clinicians' cultural skills and values in generating inequalities in health care experiences. Yet, examination of how social structural factors shape people's abilities to build, refine, and leverage strategies for navigating the health care system have received less attention. In this paper I place focus on one such social structural factor, social support, and examine how social support operates as a flexible resource that helps people navigate the health care system. Using the case of families navigating pediatric cancer care this study combines in-depth interviews with parents of pediatric cancer patients (N = 80), direct observation of clinical interactions between families and physicians (N = 73), and in-depth interviews with pediatric oncologists (N = 8). Findings show that physicians assess parental visibility in the hospital, medical vigilance, and adherence to their child's treatment and use these judgments to shape clinical decision-making. Parents who had help from their personal networks had more agility in balancing competing demands, and this allowed parents to more effectively meet institutional expectations for appropriate parental involvement in the child's health care. In this way, social support served as a flexible resource for some families that allowed parents to more quickly adapt to the demands of caring for a child with cancer, foster productive interpersonal relationships with health care providers, and play a more active role in their child's health care.

Culture, Styles of Institutional Interactions, and Inequalities in Healthcare Experiences.

In this study, I examine how parents' cultural knowledge shapes experiences navigating the healthcare system after a child is diagnosed with cancer and the extent to which differential styles of health-related advocacy contribute to inequalities in healthcare experiences. I combine data from parents' perspectives, physicians' perspectives, and direct observation of clinical interactions and find three overarching styles of health-related advocacy. Findings show that cultural dispositions and competencies shape parents' abilities to effectively navigate the healthcare system, and physicians differentially reward each style of health-related advocacy. Parents' styles of advocacy shape relationships with clinicians, physicians' perceptions of families, and physicians' strategies for interacting with families. These findings refine understanding of the mechanisms through which social class manifests in clinical interactions, shapes patient-physician relationships, and contributes to unequal healthcare experiences.

Cancer Communication on Social Media: Examining How Cancer Caregivers Use Facebook for Cancer-Related Communication.

BACKGROUND: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. OBJECTIVE: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication. METHODS: We examined themes in cancer-related exchanges through a content analysis of 12 months of data from 18 publically available Facebook pages hosted by parents of children with acute lymphoblastic leukemia (15 852 total posts). RESULTS: Six themes emerged: (1) documenting the cancer journey, (2) sharing emotional strain associated with caregiving, (3) promoting awareness and advocacy about pediatric cancer, (4) fundraising, (5) mobilizing support, and (6) expressing gratitude for support. CONCLUSIONS: Building upon previous research documenting the increasing use of social media for health-related communication and support, our findings show that personal Facebook pages offer a platform for cancer caregivers to share their cancer-related experiences, promote advocacy and awareness, and mobilize social support. IMPLICATIONS FOR PRACTICE: Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer. Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information, and support.

Examining Social Capital and Its Relation to Breast and Cervical Cancer Screening among Underserved Latinas in the U.S.

Many Latinos in the U.S. experience structural barriers to health care. Social capital and its implications for health and access to health care among this group are not well understood by researchers. This study examined associations between social capital and breast and cervical cancer screening adherence among a sample of 394 predominately Puerto Rican and Dominican women. Data were collected at baseline from Latinas attending screening education programs in Buffalo, New York and New York City in 2011-2012. Social capital was higher among Latinas who were older, better educated, insured, and spoke English. In multivariable logistic regression, a one unit increase in social capital index score was associated with greater adherence to Pap test (OR = 1.61), clinical breast exam (OR = 1.47) and mammography screening (OR = 1.50). Social capital should be further explored as a strategy to facilitate breast and cervical cancer screening among underserved Latinas.

The architecture of support: The activation of preexisting ties and formation of new ties for tailored support.

This study examines differences in the resources, information, and support parents coping with pediatric cancer accessed from different types of network contacts. Using interviews with parents of childhood cancer patients (N = 80 parents), we examine (1) if parents rely on different types of network ties to access tailored information, resources or support; (2) differences in the nature or utility of information, resources, and support offered by different types of network contacts; and (3) the role of health-related professionals in brokering new network ties. Findings show that after a child's cancer diagnosis, parents received support from a broad portfolio of network members, which included preexisting network ties to friends and families as well as the formation of new ties to other cancer families and health-related professionals. Family, friends, and neighbors offered logistical support that aided balancing preexisting work and household responsibilities with new obligations. Parents formed new ties to other families coping with cancer for tailored health-related emotional and informational support. Health-related professionals served as network brokers, who fostered the development of new network ties and connected parents with supportive resources.

Examining parents' assessments of objective and subjective social status in families of children with cancer.

INTRODUCTION: Understanding the social determinants of child health is a prominent area of research. This paper examines the measurement of socioeconomic position in a sample of families of children with cancer. Socioeconomic position is difficult to measure in pediatric health research due to sensitivity of asking about finances when research is conducted in health care delivery settings, financial volatility associated with periods of pediatric illness, and difficulty recruiting fathers to research. METHODS: Caregivers of children with cancer (n=76) completed a questionnaire that included the MacArthur Scale of Subjective Social Status (SSS). SSS was measured using two 10-rung ladders with differing referent groups: the US and respondents' communities. Respondents placed themselves on each ladder by placing an X on the rung that represented their social position in relation to the two referent groups. Individuals' SSS ratings and discrepancies in SSS ratings within couples were examined, and associations with objective social status measures were evaluated using Pearson correlations or t-tests. RESULTS: Parents' placement on the US and community ladders was positively associated with their income, education, wealth, household savings, and household savings minus debt. On average, respondents placed themselves higher on the US ladder compared to the community ladder. There was an average intra-couple discrepancy of 1.25 rungs in partner's placements on the US ladder and a 1.56 rung difference for the community ladder. This intra-couple discrepancy was not associated with gender. DISCUSSION: Results offer insight into the use of subjective social status measures to capture a more holistic assessment of socioeconomic position and the measurement of socioeconomic position in two-parent families.

Factors influencing patient pathways for receipt of cancer care at an NCI-designated comprehensive cancer center.

BACKGROUND: Within the field of oncology, increasing access to high quality care has been identified as a priority to reduce cancer disparities. Previous research reveals that the facilities where patients receive their cancer care have implications for cancer outcomes. However, there is little understanding of how patients decide where to seek cancer care. This study examined the factors that shape patients' pathways to seek their cancer care at a National Cancer Institute-designated comprehensive cancer center (NCI-CCC), and differences in these factors by race, income and education. METHODS: In-depth interviews and survey questionnaires were administered to a random sample of 124 patients at one NCI-CCC in the Northeast US. In-depth interview data was first analyzed qualitatively to identify themes and patterns in patients' pathways to receive their cancer care at an NCI-CCC. Logistic Regression was used to examine if these pathways varied by patient race, income, and education. RESULTS: Two themes emerged: following the recommendation of a physician and following advice from social network members. Quantitative data analysis shows that patient pathways to care at an NCI-CCC varied by education and income. Patients with lower income and education most commonly sought their cancer care at an NCI-CCC due to the recommendation of a physician. Patients with higher income and education most commonly cited referral by a specialist physician or the advice of a social network member. There were no statistically significant differences in pathways to care by race. CONCLUSIONS: Our findings show that most patients relied on physician recommendations or advice from a social network member in deciding to seek their cancer care at an NCI-CCC. Due to the role of physicians in shaping patients' pathways to the NCI-CCC, initiatives that strengthen partnerships between NCI-CCCs and community physicians who serve underserved communities may improve access to NCI-CCCs.