Caring for an Individual with Chronic Lymphocytic Leukemia (CLL): Understanding Family Caregivers' Perceptions of Social Support, Caregiver Burden, and Unmet Support Needs.

Family caregivers (FCs) of a patient with chronic lymphocytic leukemia (CLL) can encounter unpredictable challenges and care demands. They can experience high levels of burden, a loss of self-care, and poor quality of life. Their receipt of social support and ability to communicate with clinicians may impact their burden. FCs would benefit from educational resources that teach them communication skills central to their ability to obtain the support they need-support that is imperative to reducing burden. To better target psychosocial educational interventions focused on social support and communication skills, we aimed to explore the relationship between social support, sources of support, and burden; the relationship between FCs' clinical communication and their perceptions of support and burden; and any unmet support needs. A total of 575 CLL FCs completed an online survey of validated scales about social support, burden, and clinical communication, as well as an open-ended item in which they reported any unmet support needs. Statistical analyses showed that FCs who perceived they were more supported reported less burden, and female FCs reported more burden than males. Support from family, friends, and professionals collectively contributed to FCs' support. FCs who perceived they had stronger communication skills with their loved one's clinicians reported more social support. FCs identified six areas of unmet support needs: financial, emotional, informational, instrumental, peer, and communication support. Collectively, findings show that increased social support can reduce FCs' burden and qualitative findings provide a roadmap of social support domains to target that could potentially improve the caregiving experience.

Young Adult Caregiving Daughters and Diagnosed Mothers Navigating Breast Cancer Together: Open and Avoidant Communication and Psychosocial Outcomes.

For many diagnosed mothers and their daughters, breast cancer is a shared experience. However, they struggle to talk about cancer. This is particularly true when the daughter is in adolescence or young adulthood, as they tend to be more avoidant, which is associated with poorer biopsychosocial outcomes. When daughters are their mother's caregivers, daughters' burden and distress are heightened. Young adult caregiving daughters (YACDs) are the second most common family caregiver and encounter more distress and burden than other caregiver types. Yet, YACDs and their diagnosed mothers receive no guidance on how to talk about cancer. Thirty-nine mother/YACD pairs participated in an online survey to identify challenging topics and strategies for talking about cancer, and to explore associations between openness/avoidance and psychosocial outcomes. YACDs and mothers reported the same challenging topics (death, treatment-related issues, negative emotions, relational challenges, YACDs' disease risk) but differed on why they avoided the topic. YACDs and mothers identified the same helpful approaches to navigate conversations (openness, staying positive, third-party involvement, avoidance). Avoidance was correlated with more distress whereas openness was correlated with better psychosocial outcomes. These results provide a psychosocial map for a mother-YACD communication skills intervention, which is key to promoting healthy outcomes.

Adult-Child Caregivers' Family Communication Experiences after an Older Parent's Blood Cancer Diagnosis: A Survey Exploring Their Openness, Avoidance, and Social Support.

Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.

Understanding the Impact of COVID-19 on Chronic Lymphocytic Leukemia (CLL) Caregiving and Related Resource Needs.

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management-a role that has been heightened during the COVID-19 pandemic given the healthcare system's reliance on frontline family caregivers and CLL patients' increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn't work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.

Motivated and able: when is facebook used to seek friendship and social support?

When employing adaptive behaviors to a changing environment, ability and motivation work hand in hand. Our goal was to investigate how ability and motivation interact when utilizing Facebook for social support and friendship. We predicted that well-being and perceived social support would be negatively related to motivation to use Facebook for social support and friendship. We also predicted that computer-mediated communication (CMC) competence would positively related to these motives. A survey of 282 college students tested our mediational model. Results indicated that perceived social support mediated the relationship between well-being and motivations to use Facebook for social support, but only when CMC competence was high, meaning students experienced this relationship only when both motivated and able to use Facebook for the purpose of seeking social support. The results suggest that interventions to increase CMC competence through Facebook use can help students garner greater social support and improve overall well-being.

Impact of the family communication environment on burden and clinical communication in blood cancer caregiving.

OBJECTIVE: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS). METHOD: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI). RESULTS: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (ß = -0.11, p < 0.001), as well as cancer openness and avoidance (ß = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (ß = 0.08, p < 0.01) and SS (ß = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (ß = 0.71, p < 0.05). CONCLUSIONS: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.

Blood cancer caregiving during COVID-19: understanding caregivers' needs.

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.

Culturally Appropriate Breast Cancer and Environmental Risk Messages: Targeting Racially and Ethnically Diverse Mothers.

The National Institute of Environmental Health Sciences (NIEHS)-funded Breast Cancer and Environment Research Program (BCERP) provides evidence-informed educational materials targeting mothers with daughters to help them engage in lifestyle changes to reduce their environmental risk of breast cancer. Building on a partnership we developed to disseminate these materials via social media, we teamed with mommy bloggers and readers to evaluate the cultural appropriateness of the information using evidence-based practices for message design. We sought to (1) identify cross-culture factors that speak to a broad group of mothers and culture-specific factors to integrate when targeting specific cultures and (2) capture cultural challenges mothers encounter when they share the information with family to understand the social context in which they receive, interpret, and act on risk-reducing messages. We conducted 50 interviews with racially and ethnically diverse bloggers/readers and thematically analyzed transcripts, comparing findings across cultures. Across cultures, mothers identified five key factors for ensuring cultural appropriateness, but with notable cultural differences: (1) incorporate diverse images, (2) provide more information specific to environmental and cultural risk, (3) heighten the message of "it's a family affair", (4) make behavioral changes feasible, and (5) use less text, more visuals. Across cultures, women experienced intergenerational communication challenges with family, which were tied to (1) lack of openness, (2) relational norms, and (3) generational resistance. Findings provide message design considerations for targeting mothers broadly or based on race/ethnicity and support the notion that the larger family system should be considered when disseminating cancer risk education.

A Content Analysis of Social Support Messages about Environmental Breast Cancer Risk within Blogs for Mothers.

Bloggers can help stimulate online conversations among their readers about a variety of health topics, including breast cancer. However, in previous studies, researchers have not specifically examined supportive messages within an online blogger community that stem from an intervention where bloggers were provided with evidence-based information about breast cancer risk that they could tailor and disseminate to their readers. In the current study, we content analyzed 282 supportive messages within online conversations from participants in blogger communities over a 2-month period immediately following an intervention where the authors provided 74 bloggers who write about motherhood issues with an infographic based on evidence-based information from the Breast Cancer and the Environment Research Program (BCERP) about environmental breast cancer risk/prevention. Bloggers who shared information about their personal breast cancer risk generated a significantly higher number of blog reader comments than bloggers who did not share information about their personal breast cancer risk. Bloggers who cited breast cancer statistics in posts were more likely to draw esteem and emotional support from their readers. Bloggers' repetition of information from blog intervention messages was more likely to elicit esteem, informational, and emotional support from readers. Disclosure of a personal breast cancer diagnosis was associated with mixed types of social support messages. The theoretical and practical implications are discussed along with key limitations of the study and future directions for research in this area.

Helping Mothers and Daughters Talk about Environmental Breast Cancer Risk and Risk-Reducing Lifestyle Behaviors.

Background: Mothers and daughters struggle to talk about breast cancer risk. Even less attention is paid to environmental determinants of cancer. Third-party online approaches can be helpful navigating these conversations. The aim of this study was to obtain feedback from mothers exposed to a social media intervention ("mommy bloggers") and identify their preferences for message-design approaches that could help them talk to their daughter(s) about environmental breast cancer risk. Methods: We conducted semi-structured interviews with 50 mothers. A thematic analysis was conducted using the constant comparative method. Results: Mothers identified four approaches to message design that could help facilitate mother-daughter communication about environmental breast cancer risk. These included two action-oriented approaches that centered on getting the conversation started and keeping the conversation going and two approaches based on lifespan factors to promote daughters' engagement by using age-appropriate language and visuals and focusing on developmentally specific lifestyle behaviors. Mothers also provided recommended strategies within each approach. Conclusions: Mothers identified various approaches interventionists can utilize to overcome barriers to talking to daughters about environmental breast cancer risk. To promote mother-daughter communication, the messages should be action-oriented to facilitate interaction, but also developed with lifespan and developmental considerations in mind to engage daughters.

Talking about sexual health during survivorship: understanding what shapes breast cancer survivors' willingness to communicate with providers.

PURPOSE: Breast cancer survivor (BCS)-provider communication about sexual health (SH) is often absent or inadequate. Patients report wanting providers to broach the topic, but providers cite barriers to initiating discussions. While the health care community works to address barriers, it is unrealistic to rely solely on provider initiation of SH conversations. This research investigates willingness to communicate about sexual health (WTCSH) to better understand what may interfere with survivors' ability to self-advocate and receive care for these concerns. METHODS: (N = 305) BCSs completed online surveys. Hierarchical multiple regression determined the relationship between Sexual Quality of Life-Female (SQOL-F), which measures psychological and social dimensions of SH and WTCSH. Interviews were then conducted with forty BCSs. The constant comparative method was used to thematically analyze the transcripts. RESULTS: The mean SQOL score was 53.4 out of 100. No statistically significant differences in SQOL or WTCSH were found by age or survivorship length. The positive relationship between WTCSH and SQOL was significant, F (6,266) = 4.92, p < .000, adj. R2 = .080). Five themes illustrated factors that shape WTCSH: (1) comfort discussing SH; (2) perception of demographic similarity/discordance; (3) patient-centered communication; (4) belief that SH is (un)treatable, and (5) ability to access timely/coordinated care. CONCLUSIONS: Findings establish the significance of SH concerns and provide an in-depth understanding of intrapersonal, interpersonal, and organizational issues informing WTCSH. IMPLICATIONS FOR CANCER SURVIVORS: Age and gender dynamics, perceptions of provider SQOL messaging, and futility influence survivor openness. Addressing these areas may encourage disclosure among women who would otherwise continue to suffer in silence.

The "Real World"? Effects of Online Communication about Prostate Cancer on Offline Communication.

INTRODUCTION: Online peer-to-peer social support programs are based on the premise that support from others who have been through a similar experience can help reduce the negative impacts of disease. Such support programs are increasingly found online, but how these conversations translate into real world interactions about health concerns is currently not well understood. METHODS: Grounded in social network theory, this formative study explored how participants in an online prostate cancer community comprised of patients and their families translate their online conversations into offline ones. A survey was designed and fielded, and received 157 complete responses. RESULTS: Results support prior research findings that these offline conversations are primarily information-oriented (n = 105) and extend them by the finding that members of online prostate cancer social support communities do, in fact, share information obtained online with others offline (n = 103). Family members appear to be primary receivers of this information (n = 121) while health care providers are not, which may impact treatment and care. CONCLUSIONS: The opportunity to tie more concretely online messages with offline conversations is of critical importance and interest. Recommendations are presented for future research.

Perceptions About Disseminating Health Information Among Mommy Bloggers: Quantitative Study.

BACKGROUND: Social media are potentially powerful channels for communicating relevant health information in culturally sensitive and influential ways to key audiences. Moreover, these channels hold promise for promoting awareness and knowledge of health risks, prevention, and treatment by utilizing opinion leaders for message dissemination. Despite limited empirical evidence to-date, early promising results suggest that blogs are a form of social media that should be examined as worthy channels for health communication. OBJECTIVES: This formative study explored mommy bloggers' perceptions about sharing health-related information on their blogs with their readers. It also sought to analyze which topics would be of most interest to mommy bloggers, what motivates them to write about health issues, and how they perceive interest in these topics among their readers. METHODS: This study employed survey methodology, including the use of open-ended questions, the responses to which were coded for analysis. Specifically, a 14-item survey was fielded with mommy bloggers between October 1 and October 28, 2016. Bloggers were recruited through The Motherhood network. A total of 461 mommy bloggers responded to the survey; 163 were removed for low quality responses and incomplete data. As a result, 298 eligible participants completed the survey. For open-ended questions in the survey, a sample of responses were coded and analyzed. RESULTS: The majority of the respondents (87.2%, 260/298) reported that they have written about health issues in the past; 97.3% (290/298) of the respondents reported that they would consider writing about health issues sometime in the future, and 96.3% (287/298) of the respondents reported that their readers like to read about health issues on their blogs. In terms of content priorities for this sample of bloggers, Nutrition and Physical Activity dominate the current conversation and similarly, Physical Activity and Nutrition remain top content priorities for these bloggers for the future. Moreover, 21.3% of the respondents reported that their readers would be interested in these topics. Finally, having a personal connection with a health issue was found to be positively associated with likeliness to write about health issues on their blog (P<.001). CONCLUSIONS: This study illustrates that there are potentially rich opportunities for working with mommy bloggers to communicate with key health decision makers (moms) on important health issues. There is a great support among mommy bloggers for health information dissemination as well as interest for accessing relevant health information from their readers. This presents an opportunity for public health research and communication campaigns to more broadly promote their messages, thereby contributing to their behavior change objectives. Limitations included overrepresentation of white, higher-educated, and younger women. It suggests a need for more targeted engagement of a diverse sample for future work.

Perceived Stress in Online Prostate Cancer Community Participants: Examining Relationships with Stigmatization, Social Support Network Preference, and Social Support Seeking.

Men with prostate cancer often need social support to help them cope with illness-related physiological and psychosocial challenges. Whether those needs are met depends on receiving support optimally matched to their needs. This study examined relationships between perceived stress, prostate cancer-related stigma, weak-tie support preference, and online community use for social support in a survey of online prostate cancer community participants (n = 149). Findings revealed a positive relationship between stigma and perceived stress. This relationship, however, was moderated by weak-tie support preference and online community use for social support. Specifically, stigma was positively related to perceived stress when weak-tie support was preferred. Analyses also showed a positive relationship between stigma and perceived stress in those who used their online community for advice or emotional support. Health communication scholars should work collaboratively with diagnosed men, clinicians, and online community administrators to develop online interventions that optimally match social support needs.

The Influence of U.S. Chain Restaurant Food Consumption and Obesity in China and South Korea: An Ecological Perspective of Food Consumption, Self-Efficacy in Weight Management, Willingness to Communicate About Weight/Diet, and Depression.

This study examined the impact of U.S. chain restaurant food consumption in China and South Korea from an ecological perspective. Specifically, it explored the relationships among several environmental and individual variables that have been found to affect obesity/weight management in previous research, including the prevalence/popularity of U.S. chain restaurants in these countries, frequency of U.S. chain restaurant food consumption, self-efficacy in weight management, willingness to communicate about weight/diet, self-perceptions of weight/obesity stigma, body mass index (BMI), and depression. The results indicated that willingness to communicate about weight/diet predicted increased self-efficacy in weight management. Higher BMI scores were found to predict increased weight/obesity stigma, and increased frequency of U.S. restaurant food consumption, weight/obesity stigma, and reduced self-efficacy in weight management were found to predict increased levels of depression. The theoretical and practical implications of the findings are discussed, along with limitations and directions for future research.

The life cycle of a virus: the infectious disease narrative of NDM-1.

This study is a report of a two-part content analysis of domestic and international print news reports (over a 3-year period) that examined how the nature of the New Delhi Metallo-beta-lactamase-1 (NDM-1) virus and the severity of the threat were conveyed to global audiences. In particular, the authors focused on the ongoing crisis narrative of NDM-1 and the potentially negative outcomes of international communication warning and false alarm systems regarding global health threats. The results indicated key differences in media narratives between the initial 2011 outbreak and the 2012 postcrisis state. The authors examine the theoretical and practical implications of the findings as well as key limitations and directions for future research.

Communication that builds teams: assessing a nursing conflict intervention.

Quality communication is essential for building strong nursing teams. Structurational divergence (SD) theory explains how institutional factors can result in poor communication and conflict cycles; the theory has been developed in nursing context, although it is applicable to all organizational settings. We describe the design, implementation, and evaluation of an intervention to reduce SD and improve nurses' work life and team-member relationships. An intensive 9-hour course provided training in conflict/SD analysis and dialogic conflict/SD management to 36 working nurses from a variety of settings. Quantitative pre- and posttests were administered, with a comparison sample. The course reduced measures of negative conflict attitudes and behaviors: direct personalization, persecution feelings, negative relational effects, ambiguity intolerance, and triangulation (gossiping and complaining to uninvolved third parties). The course also increased important attitudes necessary for productive dialogue and conflict management: perceptions of positive relational effects, conflict liking, and positive beliefs about arguing. As compared with nonparticipants, participant posttests showed lower conflict persecution; higher recognition of positive relational effects; lower perceptions of negative relational effects; higher conflict liking; lower ambiguity intolerance; and lower tendency to triangulate. Qualitatively, participants perceived better understanding of, and felt more empowered to manage, workplace conflicts and to sustain healthier workplace relationships. This intervention can help nurses develop tools to improve system-level function and build productive team relationships.

Functions of social support and self-verification in association with loneliness, depression, and stress.

This study investigated the influence of social support and self-verification on loneliness, depression, and stress among 477 college students. The authors propose and test a theoretical model using structural equation modeling. The results indicated empirical support for the model, with self-verification mediating the relation between social support and health outcomes. The results have implications for social support and self-verification research, which are discussed along with directions for future research and limitations of the study.

Weak tie support preference and preferred coping styles as predictors of perceived credibility within health-related computer-mediated support groups.

Drawing upon an optimal matching model framework, this study examined weak tie support preference and coping style as predictors of credibility perceptions among members of health-related computer-mediated support groups. One hundred and thirty-five participants from various health-related online support groups responded to a survey questionnaire. The results indicated that increases in weak tie support network preference and problem-focused coping scores predicted increases in perceptions of credibility of online support group members. However, emotion-focused coping was not a significant predictor of perceived credibility. The implications of these findings for weak tie support network, coping, and credibility theories are discussed along with limitations of the study and directions for future research.

Framing medical tourism: an analysis of persuasive appeals, risks and benefits, and new media features of medical tourism broker websites.

This study explores the benefits and risks featured in medical tourism broker websites, as well as the types of persuasive appeals that these websites use to attract potential customers, from a framing theory perspective. In addition, it examines relationships among types of appeals and specific types of health-related services offered by medical facilities abroad and the role of new media modalities within medical tourism broker sites. A content analysis of 91 medical tourism broker websites was conducted. The results indicate that the websites highly emphasized benefits while downplaying the risks. Specifically, despite offering consumers complicated and risky medical procedures, the websites failed to report any procedural, postoperative, or legal concerns associated with them. Moreover, the results indicated that the websites relied on heavy use of new media features to enhance the appeal of the medical services that were offered. The implications of these findings, future directions for research, and limitations of the study are discussed.