Lisa Mikesell

Ethical Community-Engaged Research: A Literature Review

Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.

Medicinal relationships: caring conversation.

Context  Good social relationships are crucial to well‐being and to health in particular. The perception of having supportive social relationships has effects on reducing morbidity and mortality comparable with those of a good diet, regular exercise and cessation of moderate smoking. This suggests that supportive, trusting relationships with doctors could have a substantial direct biomedical effect on patients’ health.

From subject to participant: ethics and the evolving role of community in health research.

Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research.

Patient Centered, Nurse Averse? Nurses’ Care Experiences in a 21st-Century Hospital

Implementations of patient centeredness can vary tremendously across settings, yet we know little about how clinicians experience local interpretations of patient centeredness. In this article, we investigate nurses’ experiences in a hospital designed to be patient centered in its emphasis on patient amenities and customer service. This environment altered nurses’ articulation work by shifting the visibility of a number of nursing tasks; customer service tasks became more visible whereas many medical and caring tasks were obscured. We found that these changes in nursing work challenged nurses’ professional roles, and the informants reported that the changes disrupted their relationships with patients and with one another. This implementation of patient centeredness resulted in a view of nursing that conflicted with many nurses’ implicit and explicit understanding of their work. Our findings suggest that the adoption of some versions of patient centeredness might obscure substantial and substantive nursing work and might undermine nurses’ concepts of caregiving.

Repetitional responses in frontotemporal dementia discourse: Asserting agency or demonstrating confusion?:

Frontotemporal dementia (FTD) is a young-onset neurodegenerative dementia that primarily affects social behaviors. This paper examines the use of repetitional responses in FTD discourse, finding that patients often use repeats to assert agency or epistemic authority (i.e. to claim rights to knowledge). For example, repetitional responses are often used by patients to exert some autonomy when their interlocutors display a belief about the patients’ lack of knowledge about basic functioning. FTD has been associated with echolalia, the meaningless use of repetition; however, this analysis shows that the use of repetitional responses in FTD discourse can be meaningful and thus suggests that, at least in early stages of the dementia, echolalia is not always an accurate characterization of FTD patients’ use of repetitional responses.

Integrating Client and Clinician Perspectives on Psychotropic Medication Decisions: Developing a Communication-Centered Epistemic Model of Shared Decision Making for Mental Health Contexts

ABSTRACT Shared decision making (SDM) interventions aim to improve client autonomy, information sharing, and collaborative decision making, yet implementation of these interventions has been variably perceived. Using interviews and focus groups with clients and clinicians from mental health clinics, we explored experiences with and perceptions about decision support strategies aimed to promote SDM around psychotropic medication treatment. Using thematic analysis, we identified themes regarding beliefs about participant involvement, information management, and participants’ broader understanding of their epistemic expertise. Clients and clinicians highly valued client-centered priorities such as autonomy and empowerment when making decisions. However, two frequently discussed themes revealed complex beliefs about what that involvement should look like in practice: (a) the role of communication and information exchange and (b) the value and stability of clinician and client epistemic expertise. Complex beliefs regarding these two themes suggested a dynamic and reflexive approach to information management. Situating these findings within the Theory of Motivated Information Management, we discuss implications for conceptualizing SDM in mental health services and adapt Siminoff and Step’s Communication Model of Shared Decision Making (CMSDM) to propose a Communication-centered Epistemic Model of Shared Decision Making (CEM-SDM).

At the Intersection of Epistemics and Action: Responding with I Know

ABSTRACT We examine I know as a responding action, showing that it claims to accept the grounds of the initiating action but either resists that action as unnecessary or endorses it, depending on the epistemic environment created by the initiating action. First, in responding to actions that presume an unknowing addressee (e.g., correcting, advising), speakers deploy I know to resist the action as unnecessary while accepting its grounds. Second, in responding to actions that presume a knowing addressee (e.g., some assessments), speakers use I know to endorse the action, claiming an independently reached agreement (in this way, doing “being on the same page”). Data are in American and British English.

The Use of Directives to Repair Embodied (Mis)Understandings in Interactions with Individuals Diagnosed with Frontotemporal Dementia

ABSTRACT How do caregivers repair the faulty contributions to interaction of people with frontotemporal dementia? When the person stumbles in a course of action that needs to be completed promptly (for example, putting away a wallet, or reading out some text) then their caregivers use high-entitlement/low-contingency (HE/LC) formats (e.g., imperatives). Less-urgent activities elicit slightly mitigated formats, whereas actions that seem to be merely compulsive symptoms of the person’s illness are repaired with multiple directives. Analysis shows that HE/LC directives in activity-focused contexts help by explicitly identifying the trouble source and often articulate the next action required. Additionally, HE/LC formats expect compliance, which may minimally derail the progressivity of an activity compared to more mitigated forms. HE/LC formats in these contexts reveal the entitlement that caregivers claim to determine another’s actions, as well as their sensitivity to what the activity requires, and to the progression of the interaction. Data are in American English.

Exploring the Heterogeneity of ‘Schizophrenic Speech’

Despite claims that pragmatic impairment is a defining feature of schizophrenia (Covington et al., 2005), few studies explore the communication practices of individuals diagnosed with schizophrenia (IwS) in spontaneous interactions where pragmatic impairment may come to the fore. A number of linguistic deficits have been identified (Fraser, King, & Thomas, 1986; Hoffman & Sledge, 1988), but many studies examine language features de-contextualised from their interactional environment. Such an approach allows quantification of isolated, well-defined features but may mask how language use impacts functional outcomes and defines interactional moments, a gap which has led to somewhat mechanistic descriptions of ‘schizophrenic speech’. Although not all IwS exhibit problematic speech patterns, it is often clinically presumed that language is disordered, reflecting a disturbance in cognition or thought processes (Bleuler, 1911/1950). Clinicians thus often pay attention to related categories of pathology rather than to whether the language or discourse practices are communicative. As a result, the situational complexities of language behaviour may be overlooked.

Affordances of mHealth technology and the structuring of clinic communication

ABSTRACT Careful examination of communicative outcomes of mHealth technology is critical for understanding its capacity to shape the clinical interview and structure clinic communication. Drawing on a communicative affordances framework and adopting a video-based inductive analytic approach, we extend the concept of actualizations. We do so by examining the in situ communicative actions afforded by a mHealth web interface utilized during medication titration interviews with parents of children beginning stimulant medication for ADHD. We find that the web interface served five broad communicative functions that provided opportunities for improving information accuracy and for rendering clinical reasoning transparent, while jeopardizing opportunities for parents to narrativize medication experiences. We discuss clinical, theoretical, and methodological implications.