Communicating in complex situations: a normative approach to HIV-related talk among parents who are HIV+.

Parents with HIV/AIDS are confronted with unique challenges when discussing HIV-related information with their children. Strategies for navigating these challenges effectively have not been systematically examined. In this study, we conducted in-depth interviews with 76 parents with HIV/AIDS who had children ages 10-18 years. Guided by O'Keefe and Delia's definition of a complex communication situation and Goldsmith's normative approach to interpersonal communication, we examined parents' goals for discussing HIV-related information, factors that made conversations challenging, and instances where these conversational purposes conflicted with one another. Our data reveal the following parent-adolescent communication predicaments: relaying safety information about HIV while minimizing child anxiety, modeling open family communication without damaging one's parental identity, and balancing parent-child relational needs amid living with an unpredictable health condition. Parents also described a variety of strategies for mitigating challenges when discussing HIV-related topics. Strategies parents perceived as effective included reframing HIV as a chronic, manageable illness; keeping talk educational; and embedding HIV-related topics within more general conversations. The theoretical and practical applications of these findings are discussed with regard to their relevance to health communication scholars and HIV care professionals.

Work and "mass personal" communication as means of navigating nutrition and exercise concerns in an online cancer community.

BACKGROUND: Health and psychosocial outcomes for young adults affected by cancer have improved only minimally in decades, partially due to a lack of relevant support and information. Given significant unmet needs involving nutrition and exercise, it is important to understand how this audience handles information about food and fitness in managing their cancer experiences. OBJECTIVE: Using the theory of illness trajectories as a framework, we explored how four lines of work associated with living with a chronic illness such as cancer (illness, everyday life, biographical, and the recently explicated construct of communication work) impacts and is impacted by nutrition and exercise concerns. METHODS: Following a search to extract all nutrition- and exercise-related content from the prior 3 years (January 2008 to February 2011), a sample of more than 1000 posts from an online support community for young adults affected by cancer were qualitatively analyzed employing iterative, constant comparison techniques. Sensitized by illness trajectory research and related concepts, 3 coders worked over 4 months to examine the English-language, de-identified text files of content. RESULTS: An analysis of discussion board threads in an online community for young adults dealing with cancer shows that nutrition and exercise needs affect the young adults' illness trajectories, including their management of illness, everyday life, biographical, and communication work. Furthermore, this paper helps validate development of the "communication work" variable, explores the "mass personal" interplay of mediated and interpersonal communication channels, and expands illness trajectory work to a younger demographic than investigated in prior research. CONCLUSIONS: Applying the valuable concepts of illness, everyday life, biographical, and communication work provides a more nuanced understanding of how young adults affected by cancer handle exercise and nutrition needs. This knowledge can help provide support and interventional guidance for the well-documented psychosocial challenges particular to this demographic as they manage the adversities inherent in a young adult cancer diagnosis. The research also helps explain how these young adults meet communication needs in a "mass personal" way that employs multiple communication channels to meet goals and thus might be more effectively reached in a digital world.

Defining adolescent and young adult (AYA) exercise and nutrition needs: concerns communicated in an online cancer support community.

OBJECTIVE: To describe topics, needs, and concerns related to nutrition and exercise that adolescents and young adults affected by a serious illness (cancer) discuss online. METHODS: Investigators conducted a qualitative content analysis of messages related to nutrition and exercise posted on an online young adult cancer forum. RESULTS: AYAs described several functions achieved through nutrition and exercise, such as fighting cancer, losing weight, obtaining nutrients despite side effects of treatment, promoting general health, enjoyment, and promoting mental/emotional health. AYAs also discussed several problems that interfere with nutrition and exercise goals, such as side effects of steroids, physiological problems with eating, safety concerns or physical limitations due to treatment, poor follow through with behavioral change, stress, and low energy. CONCLUSION: AYAs discuss specific ways nutrition and exercise help achieve a variety of functions that may be physical or psychological, cancer-specific or general. AYAs describe several concerns and barriers that impede their nutrition and exercise goals. PRACTICE IMPLICATIONS: Clinicians should also consider relevant medical and personal variables that partly determine nutrition and exercise concerns. Clinicians can anticipate barriers to desired nutrition/exercise change and develop interventions that address these barriers in appropriately tailored ways, including using digital media.

Sources of patient uncertainty when reviewing medical disclosure and consent documentation.

OBJECTIVES: Despite evidence that medical disclosure and consent forms are ineffective at communicating the risks and hazards of treatment and diagnostic procedures, little is known about exactly why they are difficult for patients to understand. The objective of this research was to examine what features of the forms increase people's uncertainty. METHODS: Interviews were conducted with 254 individuals. After reading a sample consent form, participants described what they found confusing in the document. With uncertainty management as a theoretical framework, interview responses were analyzed for prominent themes. RESULTS: Four distinct sources of uncertainty emerged from participants' responses: (a) language, (b) risks and hazards, (c) the nature of the procedure, and (d) document composition and format. CONCLUSIONS: Findings indicate the value of simplifying medico-legal jargon, signposting definitions of terms, removing language that addresses multiple readers simultaneously, reorganizing bulleted lists of risks, and adding section breaks or negative space. PRACTICE IMPLICATIONS: These findings offer suggestions for providing more straightforward details about risks and hazards to patients, not necessarily through greater amounts of information but rather through more clear and sufficient material and better formatting.

Using Twitter for prenatal health promotion: encouraging a multivitamin habit among college-aged females.

Half of the pregnancies in the United States are unplanned and the highest rate of these unplanned pregnancies occurs in young women aged 18-24y. Serious birth defects, such as those that affect the neural tube, occur early in pregnancy, most of the time before a woman knows she is pregnant. These neural tube defects can be reduced by 50-72% with an adequate daily intake of folic acid. In continuing the research on how to effectively communicate the important benefits of folic acid to young women, this study sought to investigate the use of social media as a tool for health promotion. Young women are considered the 'power users' of social media and the current study uses Twitter as a vehicle for multivitamin promotion messages due to the ability to quickly share content and the potential to attract viral attention through re-tweets.

Exploring psychosocial support online: a content analysis of messages in an adolescent and young adult cancer community.

The increased usage of online cancer support groups as a resource for health-related information and social support has sparked numerous discussions about the role of online support in healthcare. However, little is known about the role of social-networking groups focused on supporting adolescents and young adults (AYAs) dealing with cancer. The current investigation report findings from a content analysis designed to explore how AYAs use an online support group to meet their psychosocial needs. Overall, members of the community focused on exchanging emotional and informational support, coping with difficult emotions through expression, describing experiences of being an AYA dealing with cancer through language (metaphors), enacting identity through evaluations of the new normal (life with and after cancer), and communicating membership as an AYA with cancer. This study highlights the unique needs of the AYA cancer community and offers a preliminary roadmap for practitioners, and network members, such as family and friends, to attempt to meet the needs of this unique community.

The nature of communication work during cancer: advancing the theory of illness trajectories.

More theory development about interpersonal communication during cancer is needed so that scholarship can be advanced and practical applications of findings can be best disseminated and applied. We proposed an evidence-based extension to the theory of illness trajectories based on findings from a qualitative study of cancer survivors' (n = 40) experiences with communication. Grounding our analysis in respondents' descriptions of the demands, obligations, and preparatory activities involved in discussing their cancer, we theorized the construct of communication work, which focuses on the labor and resources devoted to managing talk during cancer and living with illness. Findings are discussed in terms of how this conceptualization presents new opportunities for research and practice.

Health literacy, self-efficacy, and patients' assessment of medical disclosure and consent documentation.

Informed consent documents are designed to convey the risks of medical procedures to patients, yet they are often difficult to understand; this is especially true for individuals with limited health literacy. An important opportunity for advancing knowledge about health literacy and informed consent involves examining the theoretical pathways that help to explain how health literacy relates to information processing when patients read consent forms. In this study, we proposed and tested a model that positioned self-efficacy as a mediator of the association between health literacy and patients' comprehension and assessment of informed consent documentation. Findings from structured interviews with patients (n = 254) indicated that lower health literacy predicted lower self-efficacy, which predicted feeling less well informed and less prepared, being more confused about the procedure and its hazards, and wanting more information about risks. Incorporating awareness of self-efficacy into disclosure documents and consent conversations may be a useful means of prompting patients to ask questions that can help them make informed decisions about care.

Health literacy as controversy: an online community's discussion of the U.S. Food and Drug Administration acetaminophen recommendations.

Adults in the United States increasingly use the Internet for health information, and online discussions can provide insights into public perceptions of health issues. The purpose of this project was to investigate public perceptions of issues related to health literacy, within the context of a conversation about recommendations to the U.S. Food and Drug Administration, driven by concerns about acetaminophen-related liver injuries due in part to health literacy issues. The discussion took place July 2-8, 2009, on a technology/science blog and included 625 comments. Participants debated the risks and benefits of acetaminophen, and most believed responsibility for taking medication safely falls on consumers. Some were implicitly aware of issues related to health literacy and its relationship to patient outcomes; most felt improved education is all that is needed, whereas others acknowledged that health information is confusing--particularly for the elderly and sick. Recommendations for future research into public perceptions of health literacy are discussed.

Breast cancer patients' topic avoidance and psychological distress: the mediating role of coping.

Avoiding communication about cancer is common and is likely to have negative psychological health consequences for patients, yet the connection between topic avoidance and psychological well-being is not well understood. This study of women with breast cancer examined coping behaviors as mediating mechanisms through which their cancer-related topic avoidance might affect their psychological distress. Consistent with predictions, greater levels of patient topic avoidance were associated with higher levels of depression and anxiety. Results indicated that topic avoidance may decrease patients' use of emotional support and increase patients' self-blame, each of which may lead to higher levels of psychological distress.

Do message features influence reactions to HIV disclosures? a multiple-goals perspective.

People who are HIV-positive must make decisions about disclosing their status to others but do so in the context of stigma and social isolation reported by many with the disease. Disclosing an HIV-positive diagnosis is necessary to seek social support, to manage health care, and to negotiate sexual encounters, but fear of how others will respond is a strong barrier to revealing that information. This investigation focuses on various ways that HIV can be disclosed. Using a multiple-goals perspective, 24 disclosure messages (representing 6 different types) were created. Participants (N = 548) were asked to imagine one of their siblings revealing an HIV-positive diagnosis, using 1 of the 24 messages. Participants' reactions to the disclosures differed substantially across the various message types. The discussion focuses on theoretical explanations for the variations in responses and the utility of these findings for practical interventions concerning HIV disclosures.

Uncertainty of social network members in the case of communication-debilitating illness or injury.

Uncertainty is a consequential aspect of chronic illness for patients as well as their family and friends, yet little research has focused on how non-ill individuals experience uncertainty about the condition of someone in their social network. Thirty-one individuals with loved ones who had a communication-debilitating illness or injury (CDI) participated in one-on-one interviews about their experiences. We analyzed transcripts for participants' sources of uncertainty and for ways that they managed the uncertainty. Participants' experiences with uncertainty included questions about the condition itself and involved the impaired communication resulting from the CDI. Participants described managing uncertainty through information seeking, changing the ways they communicated with the person with the CDI, and creating schemata to help reduce uncertainty. We discuss the findings in terms of predominant conceptualizations of uncertainty in illness and address the prevalence of communication as both a significant source of uncertainty and an important means of managing uncertainty.

Effects of communication-debilitating illnesses and injuries on close relationships: a relational maintenance perspective.

A communication-debilitating illness or injury (CDI) presents significant challenges for patients as well as for friends and family. In a qualitative study of the effects of a CDI on close relationships, 28 individuals with loved ones who had experienced a CDI were interviewed. Participants described adjustments in communication with the patient and explained what it is like to experience a relationship with a CDI patient. Themes that emerged transcended the type of illness and relationship. Recommendations are made for further research that focuses on patients' relationships with a variety of social network members, beyond primary caregivers.