Phokeng M. Dailey

Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness

Serious illness of a loved one can disrupt a caregiver’s sense of self and relationships. We examined the language caregivers use to describe the cancer treatment decision making of a loved one to understand how caregivers frame their own identity relative to a patient’s illness. We analyzed transcripts from in-depth interviews conducted with caregivers (N = 58) of cancer patients to examine the intersection among language, identity, and illness. Caregivers with a patient-level personal identity frame used phrases such as their body, their decision. Caregivers with a relational identity frame used plural pronouns such as we or our when describing the treatment decision. Importantly, some caregivers perceived an illness identity gap in that the patients’ perceptions of their illness identity differed from their own. Illness identity gaps are theorized to be associated with treatment decision making more closely aligned with intergroup, rather than interpersonal, processes.

Comprehension of Randomization and Uncertainty in Cancer Clinical Trials Decision Making Among Rural, Appalachian Patients.

Comprehension of randomization is a vital, but understudied, component of informed consent to participate in cancer randomized clinical trials (RCTs). This study examines patient comprehension of the randomization process as well as sources of ongoing uncertainty that may inhibit a patient’s ability to provide informed consent to participate in RCTs. Cancer patients living in rural Appalachia who were offered an opportunity to participate in a cancer treatment RCT completed in-depth interviews and a brief survey. No systematic differences in randomization comprehension between patients who consented and those who declined participation in a cancer RCT were detected. Comprehension is conceptually distinct from uncertainty, with patients who had both high and low comprehension experiencing randomization-related uncertainty. Uncertainty about randomization was found to have cognitive and affective dimensions. Not all patients enrolling in RCTs have a sufficient understanding of the randomization process to provide informed consent. Healthcare providers need to be aware of the different types of randomization-related uncertainty. Efforts to improve informed consent to participate in RCTs should focus on having patients teach back their understanding of randomization. This practice could yield valuable information about the patient’s cognitive and affective understanding of randomization as well as opportunities to correct misperceptions. Education about RCTs should reflect patient expectations of individualized care by explaining how all treatments being compared are appropriate to the specifics of a patient’s disease.

Community Engagement as a Process and an Outcome of Developing Culturally Grounded Health Communication Interventions: An Example from the DECIDE Project

Community engagement is a process often used in developing effective health communication interventions, especially in traditionally underserved cultural contexts. While the potentially positive outcomes of community engagement are well established, the communication processes that result in engagement with cultural groups are less apparent. The focus on the outcomes of engagement at the expense of describing how engagement occurs makes it difficult for methods to be improved upon and replicated by future studies. The purpose of the current manuscript is to illustrate the process of achieving community engagement through the development of a culturally grounded health communication intervention. We offer practical suggestions for implementing community engagement principles, as well as the benefits and challenges inherent in this approach to research. Key points are illustrated using examples from the DECIDE Project, a culturally grounded intervention for improving communication about clinical trials in the medically underserved Appalachian region.

Communication and US-Somali Immigrant Human Papillomavirus (HPV) Vaccine Decision-Making.

The current study uses a multiple goal theoretical perspective to explore how Somali immigrant families living in Ohio, USA, make decisions regarding whether to vaccinate their children against human papillomavirus (HPV)—a leading cause of cervical cancer. A focus was placed on the communication goals of parents in HPV vaccine discussions with their child and health care provider. Semi-structured interviews were audiotaped, transcribed, and analyzed using a grounded theory approach. Key themes are the implications of the vaccine for early sexual activity, confusion between HPV and HIV (human immunodeficiency virus), the perception that the HPV vaccine is unnecessary, uncertainty about the vaccine’s efficacy and side effects, avoidance of parent-child communication about the vaccine, and a preference for framing the vaccine as a health promotion behavior. Framing the threat of HPV in the context of initiation of sexual activity, uncertainty regarding vaccine efficacy, and anticipated regret account for the inconsistency in HPV vaccine uptake among Somali parents. Clinicians should consider talking about HPV as a distal versus an immediate threat and HPV vaccine uptake as a health-promotion behavior rather than a sexually transmitted infection prevention behavior.

Age Differences in Cancer Treatment Decision Making and Social Support.

Objective: The aim of this study was to examine the decision-making (DM) styles of younger (18-39 years), middle-aged (40-59 years), and older (≥60 years) cancer survivors, the type and role of social support, and patient satisfaction with cancer treatment DM. Method: Adult cancer survivors (N = 604) were surveyed using Qualtrics online software. Results: Older adults reported significantly lower influence of support on DM than younger adults. The most common DM style for the age groups was collaborative DM with their doctors. Younger age was a significant predictor of independent (p < .05), collaborative with family (p < .001), delegated to doctor (p < .01), delegated to family (p < .001), and demanding (p < .001) DM styles. Discussion: Despite having lower received social support in cancer treatment DM, older adults were more satisfied with their DM than younger and middle-aged adults. Health care workers should be aware of different DM styles and influence of social networks to help facilitate optimal patient DM and satisfaction.

Distributed Cognition in Cancer Treatment Decision Making: An Application of the DECIDE Decision-Making Styles Typology:

Distributed cognition occurs when cognitive and affective schemas are shared between two or more people during interpersonal discussion. Although extant research focuses on distributed cognition in decision making between health care providers and patients, studies show that caregivers are also highly influential in the treatment decisions of patients. However, there are little empirical data describing how and when families exert influence. The current article addresses this gap by examining decisional support in the context of cancer randomized clinical trial (RCT) decision making. Data are drawn from in-depth interviews with rural, Appalachian cancer patients (N = 46). Analysis of transcript data yielded empirical support for four distinct models of health decision making. The implications of these findings for developing interventions to improve the quality of treatment decision making and overall well-being are discussed.

Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making

ABSTRACT When patients are diagnosed with cancer, they begin to negotiate their illness identity in relation to their past and future selves, their relationships, and their group memberships. Thus, how patients view their cancer in relation to their other identities may affect how and why they make particular decisions about treatment options. Using the Communication Theory of Identity (CTI), the current study explores: (1) how and why illness identity is framed across identity layers in relation to one particular cancer treatment: participation in a cancer clinical trial (CT); and (2) how and why patients experience identity conflicts while making their treatment decisions. Semi-structured, in-depth interviews were analyzed for 46 cancer patients who were offered a CT. Results of a grounded theory analysis indicated that patients expressed separate identity frames (e.g., personal, relational, and communal), aligned identity frames (e.g., personal and communal), and identity conflicts (e.g., personal-personal). This study theoretically shows how and why patient illness identity relates to cancer treatment decision-making as well as how and why patients relate (and conflict) with the cancer communal identity frame. Practical implications include how healthcare providers and family members can support patient decision-making through awareness of and accommodating to identity shifts.

Taking a Closer Look at the Factors That Influence Ethnic Identity

Ethnic identity (EI) has long been known to supersede race as a predictor for attitudes and behaviors. However, little is known about the constituent parts that comprise and influence ethnic identity. In order to improve communications that target EI, we examine both demographic and communication variables to determine which have a greater pull on people’s attitudes and actions. Race appears to moderate the effects of age on ethnic identity, whereby age was negatively related to ethnic-identity exploration among White participants and positively related to ethnic identity commitment among Black participants (p < .05). Having a higher income, print-media use, and information-engagement orientation were also positively correlated with ethnic identity; education and gender were not. Implications and future directions are discussed.

User Perceptions and Reactions to an Online Cancer Risk Assessment Tool: a Process Evaluation of Cancer Risk Check

Online cancer risk assessment tools, which provide personalized cancer information and recommendations based on personal data input by users, are a promising cancer education approach; however, few tools have been evaluated. A randomized controlled study was conducted to compare user impressions of one tool, Cancer Risk Check (CRC), to non-personalized educational information delivered online as series of self-advancing slides (the control). CRC users (N = 1452) rated the tool to be as interesting as the control (p > .05), but users were more likely to report that the information was difficult to understand and not applicable to them (p < .05). Information seeking and sharing also were lower among CRC users; thus, although impressions of CRC were favorable, it was not shown to be superior to existing approaches. We hypothesized CRC was less effective because it contained few visual and graphical elements; therefore, CRC was compared to a text-based control (online PDF file) post hoc. CRC users rated the information to be more interesting, less difficult to understand, and better able to hold their attention (p < .05). Post hoc results suggest the visual presentation of risk is critical to tool success.