Angela L. Palmer-Wackerly

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.

Dancing Around Infertility: The Use of Metaphors in a Complex Medical Situation

People use metaphors to cognitively frame their experiences as well as to explain those experiences to others, especially in complex medical situations. However, previous research has not fully explored the extent to which metaphors may be helpful or harmful to achieving well-being. This investigation fills this gap by identifying and explaining metaphor use in the context of infertility. Guided by self-determination theory, in-depth interviews were conducted with 22 women and men who had experienced an inability to conceive a child. Analysis of participant narratives yielded 10 prominent metaphors that reflect how participants’ need for competence, autonomy, and relatedness were (and were not) met during their infertility experience. Results indicate that cognitively framing the infertility experience using certain metaphors is more likely to enhance personal and relational well-being, while others may be more harmful. Suggestions for communication with doctors, partners, families, and friends are discussed.

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.

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.

The Role of Health Care Provider and Partner Decisional Support in Patients’ Cancer Treatment Decision-Making Satisfaction

Cancer patients rely on multiple sources of support when making treatment decisions; however, most research studies examine the influence of health care provider support while the influence of family member support is understudied. The current study fills this gap by examining the influence of health care providers and partners on decision-making satisfaction. In a cross-sectional study via an online Qualtrics panel, we surveyed cancer patients who reported that they had a spouse or romantic partner when making cancer treatment decisions (n = 479). Decisional support was measured using 5-point, single-item scales for emotional support, informational support, informational-advice support, and appraisal support. Decision-making satisfaction was measured using Holmes-Rovner and colleagues’ (1996) Satisfaction With Decision Scale. We conducted a mediated regression analysis to examine treatment decision-making satisfaction for all participants and a moderated mediation analysis to examine treatment satisfaction among those patients offered a clinical trial. Results indicated that partner support significantly and partially mediated the relationship between health care provider support and patients’ decision-making satisfaction but that results did not vary by enrollment in a clinical trial. This study shows how and why decisional support from partners affects communication between health care providers and cancer patients.

Procrastination and the Shifting Political Media Environment: An Experimental Study of Media Choice Affecting a Democratic Outcome

The shifting media environment is expected to have a variety of effects on political knowledge and behavior. An experimental study was conducted to assess the influence of media environment on news consumption, perceptions of media experience quality, and success on a political outcome. In addition, procrastination is introduced as a potentially important individual-difference variable with assessments offered for both its main effects and its ability to moderate the influence of media environment. Media environment complexity predicted lower news use and higher success on our political outcome. Procrastinations effect was on media experience perceptions and a media environment-by-procrastination interaction on this portion of the hypothesized model. These outcomes then went on to predict success on a task analogous to democratic participation.