Susan M. Cox

Stories in Decisions: How At-Risk Individuals Decide to Request Predictive Testing for Huntington Disease

Huntington Disease (HD) is a hereditary neurological disease that typically occurs in mid-life. There is no prevention or cure, but persons at risk may request predictive genetic testing to learn whether or not they will develop the disease later in life. Many studies describe why such persons request this knowledge. Few consider how people actually make this novel decision. Drawing on in-depth interviews with sixteen test candidates, this article differentiates three types of stories about—as well as embedded in—the experience of deciding. Each type of story sheds a different light on the meaning and experience of making this decision. Stories of having to know reveal that decision-making may be experienced as a self-evident act while stories of evolving toward it feature an incremental process of weighing up the implications. Stories of taking the decision feature a pivotal point which involves the narrator in seeing anew the opportunity to make a choice. Emphasizing previously neglected temporal, biographical and phenomenological dimensions of decision-making, this typology underscores the relevance of narrative in complex processes of decision-making. It also illustrates the inadequacy of understanding decision-making purely through the lens of rational choice.

Tipping the iceberg? The state of arts and health in Canada

The field of arts and health is rapidly gaining momentum in Canada despite the challenges of integration across a vast geography, two official languages and multiple interdisciplinary cultures. Although the field is young, there is a solid foundation of innovative work and great enthusiasm on the part of diverse practitioners about the fields salience and impact. This article provides an overview of the arts and health in Canada and considers work that spans health policy, healthcare practice, individual and community health promotion, health professional education and arts-based health research. A final section offers reflections and recommendations on arts and health in Canada. We provide an online appendix through the journals website that refers the interested reader to Canadian programs, resources, networks and other materials on the arts and health.

Trust in Health Research Relationships: Accounts of Human Subjects:

Trust is fundamental in health research, yet there is little empirical evidence that explores the meaning of trust from the perspective of human subjects. The analysis presented here focuses on how human subjects talked about trust in the in-depth interviews. It emerged from the accounts that trust could not be assumed in the research setting, rather it was portrayed as a dynamic concept, built and easily broken, characterized by reciprocity and negotiation. Human subjects were ambivalent about who, when, what, and how much to trust in the research endeavor. This paper adds a fresh perspective to the literature on trust, and so offers a currently neglected, and little understood dimension to the discourse around health research ethics.

Qualitative Research Ethics: Enhancing Evidence-Based Practice in Physical Therapy

Background Increasing challenges to health care systems and the prominence of patient-centered care and evidence-based practice have fostered the application of qualitative approaches in health care settings, prompting discussions of associated ethical issues in a range of disciplines. Objectives The purposes of this work were to identify and describe the application and value of qualitative health research for physical therapy and to identify ethical considerations in a qualitative research study. Design This was a qualitative interview study with telephone follow-ups. Methods Forty-six participants were interviewed about their early experiences with rheumatoid arthritis. They also were asked what motivated them to volunteer for the study. To inform the discussion of ethics in qualitative health research, this study drew on the in-depth interviews, took a descriptive approach to the data, and applied the traditional ethical principles of autonomy, justice, and beneficence to the study process. Results Ethical issues emerged in this qualitative health research study that were both similar to and different from those that exist in a positivist paradigm (eg, clinical research). With flexibility and latitude, the traditional principle approach can be applied usefully to qualitative health research. Conclusions These findings build on previous research and discussion in physical therapy and other disciplines that urge a flexible approach to qualitative research ethics and recognize that ethics are embedded in an unfolding research process involving the role of the subjective researcher and an active participant. We suggest reflexivity as a way to recognize ethical moments throughout qualitative research and to help build methodological and ethical rigor in research relevant to physical therapist practice.

‘If you can call it a poem’: toward a framework for the assessment of arts-based works

The use of artistic forms as an alternative means for representing research findings is gaining acceptance in the research community. There are, however, important yet unresolved and even contentious issues arising from these new applications of the arts. These include concerns about the level of expertise required to effectively utilize the arts in research, the appropriateness of various methods of creating artworks and the desirability of identifying criteria for assessing arts-based contributions. Centring on the question of criteria for the creation and assessment of arts-based works, we note that there are, at present, few salient guidelines. Drawing upon our experience in conducting a pilot project employing arts-based methods of representing research findings, we propose a Guiding Arts-Based Research Assessment (GABRA) meta-framework for assessing the quality and effectiveness of utilizing the arts for knowledge dissemination. This overarching framework incorporates normative, substantive and performative aspects of arts-based methods of representing research findings.

Everyday ethics and help-seeking in early rheumatoid arthritis

Background: Sociological understandings of chronic illness have revealed tensions and complexities around help-seeking. Although ethics underpins healthcare, its application in the area of chronic illness is limited. Here we apply an ethical framework to interview accounts and identify ethical challenges in the early rheumatoid arthritis (RA) experience. Methods: In-depth interviews were conducted with eight participants who had been diagnosed with RA in the 12 months prior to recruitment. Applying the concepts of autonomous decision-making and procedural justice highlighted ethical concerns which arose throughout the help-seeking process. Analysis was based on the constant-comparison approach. Results: Individuals described decision-making, illness actions and the medical encounter. The process was complicated by inadequate knowledge about symptoms, common-sense understandings about the GP appointment, difficulties concerning access to specialists, and patient—practitioner interactions. Autonomous decision-making and procedural justice were compromised. The accounts revealed contradictions between the policy ideals of active self-management, patient-centred care and shared decision-making, and the everyday experiences of individuals. Conclusions: For ethical healthcare there is a need for: public knowledge about early RA symptoms; more effective patient—practitioner communication; and increased support during the wait between primary and secondary care. Healthcare facilities and the government may consider different models to deliver services to people requiring rheumatology consults.

Exploring occupational disruption among women after onset of rheumatoid arthritis

To portray experiences of women engaging in everyday tasks, activities, and occupations, from symptom onset to 12 months after diagnosis with rheumatoid arthritis (RA), and to explore the meanings attributed to their activities and occupations.

“My turbinado sugar”: Art-making, well-being and professional identity in medical education

Background: There is strong evidence supporting the personal and professional benefits for medical students of exposure to art. There is limited information on art-making in relation to medical education. Methods: We explored art-making within medical education by analysing 76 artist statements submitted with visual artwork by students, residents and practitioners to the 2010 and 2011 White Coat Warm Art exhibitions. We analysed the data using grounded theory strategies to identify how medical students and practitioners describe their engagement in artistic creation and how it impacts their personal and professional lives. Results: Our analysis yielded eight themes that illustrated instrumental, humanistic and advocacy-oriented implications of art-making: enhancing learning, escaping constraints, balancing life and work, surviving, expressing self-identity and discovering professional identity, bearing witness, healing self and others, and advocating change. Conclusions: Art-making can play a valuable role in medical education by providing a means of making sense of, and learning foundational information and concepts in medicine. Creative expression through artistic means also provides learners and practitioners a means of exploring their emerging sense of professional identity and clarifying their value commitments. In addition, the experience of art-making fosters well-being, empathy and commitment towards a better future for medicine.

Communications between volunteers and health researchers during recruitment and informed consent: qualitative content analysis of email interactions.

Background While use of the Internet is increasingly widespread in research, little is known about the role of routine electronic mail (email) correspondence during recruitment and early volunteer–researcher interactions. To gain insight into the standpoint of volunteers we analyzed email communications in an early rheumatoid arthritis qualitative interview study. Objectives The objectives of our study were (1) to understand the perspectives and motivations of individuals who volunteered for an interview study about the experiences of early rheumatoid arthritis, and (2) to investigate the role of emails in volunteer–researcher interactions during recruitment. Methods Between December 2007 and December 2008 we recruited 38 individuals with early rheumatoid arthritis through rheumatologist and family physician offices, arthritis Internet sites, and the Arthritis Research Centre of Canada for a (face-to-face) qualitative interview study. Interested individuals were invited to contact us via email or telephone. In this paper, we report on email communications from 12 of 29 volunteers who used email as their primary communication mode. Results Emails offered insights into the perspective of study volunteers. They provided evidence prospectively about recruitment and informed consent in the context of early rheumatoid arthritis. First, some individuals anticipated that participating would have mutual benefits, for themselves and the research, suggesting a reciprocal quality to volunteering. Second, volunteering for the study was strongly motivated by a need to access health services and was both a help-seeking and self-managing strategy. Third, volunteers expressed ambivalence around participation, such as how far participating would benefit them, versus more general benefits for research. Fourth, practical difficulties of negotiating symptom impact, medical appointments, and research tasks were revealed. We also reflect on how emails documented volunteer–researcher interactions, illustrating typically undocumented researcher work during recruitment. Conclusions Emails can be key forms of data. They provide richly contextual prospective records of an underresearched dimension of the research process: routine volunteer–researcher interactions during recruitment. Emails record the context of volunteering, and the motivations and priorities of volunteers. They also highlight the “invisible work” of research workers during what are typically considered to be standard administrative tasks. Further research is needed to fully understand the role of routine emails, what they may reveal about volunteers’ decisions to participate, and their implications for research relationships—for example, whether they have the potential to foster rapport, trust, and understanding between volunteer and researcher, and ultimately shift the power dynamic of the volunteer–researcher relationship.

Exploring ethical frontiers of visual methods

Visual research is a fast-growing interdisciplinary field. The flexibility and diversity of visual research methods are seen as strengths by their adherents, yet adoption of such approaches often requires researchers to negotiate complex ethical terrain. The digital technological explosion has also provided visual researchers with access to an increasingly diverse array of visual methodologies and tools that, far from being ethically neutral, require careful deliberation and planning for use. To explore these issues, the Symposium on Exploring Ethical Frontiers of Visual Methods was held at the University of Melbourne, Australia, on 4 March 2014. The symposium was hosted by the Visual Research Collaboratory, a consortium of Australian and Canadian visual researchers, with support from Melbourne Social Equity Institute, University of Melbourne. The symposium represented the culmination of a process to develop a resource outlining principles of ethical practice for visual researchers and ethics committee members, the Guidelines for Ethical Visual Research Methods, which were launched at the event. The Guidelines present a framework for considering ethical matters in visual research, distinguishing six groups of issues united by an overarching theme: confidentiality; minimizing harm; consent; fuzzy boundaries; authorship and ownership; and representation and audiences.