The ethical dimensions of everyday alcohol and other drug work: An empirical ethics investigation.

INTRODUCTION: The complex and contentious nature of alcohol and other drug (AOD) clinical work affords the likelihood of significant ethical dimensions. However, little attention has been paid to clinicians' perspectives of ethics in their practice within AOD settings. This potentially neglects an important aspect of AOD clinical work. METHODS: We used an insider empirical ethics methodology, where the first author (DS) concurrently worked as an AOD clinician in the research setting. Participants were 30 experienced AOD clinicians, working within a large specialist AOD service in Victoria, Australia. We used three qualitative data collection methods: moral conversation, involving semi-structured interviews; moral participation, involving the first author reflecting on his own ethical practices; and participant-observation, involving observation of clinical meetings. We used Applied Thematic Analysis to analyse the data. RESULTS: Although participants rarely used explicitly ethical language to describe their work, they described four ethical goals: helping clients to access AOD care and treatment; facilitating change in clients' lives; challenging stigma; and keeping people safe. We argue that these clinical goals should also be conceptualised as ethical goals. DISCUSSION AND CONCLUSIONS: Ethics is an integral component of everyday AOD work. Our findings had some overlap with established ethical principles. Participants demonstrated expertise in engaging with ethical dimensions, without using ethical language. Given the limited attention paid to ethics in AOD clinical settings, increasing the focus on ethics in everyday clinical practice is an important contribution to future AOD clinical work. Its absence negates important aspects of care for clients.

Understanding adolescent girls' and young women's health-seeking for female genital cosmetic surgery: How can clinicians help their patients?

AIM: This study aimed to understand why adolescent girls and young women (AGYW) would seek consultation with a health professional about genital appearance concerns and/or request female genital cosmetic surgery (FGCS). The information derived from these participant interviews can inform clinical practice and help clinicians better navigate consultations with young women and girls requesting FGCS. METHODS: A qualitative exploratory study was conducted using in-depth, semi-structured interviews with AGYW (n = 11) in Victoria, Australia. Participants comprised 11 AGYW who sought consultation with a health professional when aged 13-19 years for genital appearance concerns and/or requests for FGCS. Key themes were identified using a thematic analysis approach. RESULTS: Of 11 participants, five had undergone FGCS between the ages of 13 and 23 years. Key reasons for seeking a consultation identified in the interviews included: ideas about what 'normal' genitals look like, experiences of sexual harassment and bullying, and concerns about genital appearance developing before sexual debut. CONCLUSIONS: It is important to understand why AGYW want to access these procedures, given the risks involved, and that FGCS is not recommended by paediatric specialist organisations. Understanding why AGYW seek consultation for FGCS can help inform clinical practice, and the views expressed by participants in this study can help clinicians who work in this area to better support their patients.

How to use visual methods to promote health among adolescents: A qualitative study of school nursing.

AIMS AND OBJECTIVES: Public health nurses attended a 3-day course to learn the use of visual methods in health dialogue with adolescents. The aim of this study was to explore how to use visual methods to promote health among adolescents in a school nursing context. BACKGROUND: Photovoice is a visualising technique that enables adolescents to participate in health promotion projects in a school setting. Photovoice also enhances work of public health nurses and other health professionals. DESIGN: This was a qualitative action research study. We developed and conducted a course in visual methods and used data from focus group discussions in combination with participant observations involving public health nurses working in school health services. METHODS: We conducted focus group interviews (n = 40) using separate semi-structured discussion guides before and after a course in visual methods. The interviews were audio recorded and transcribed verbatim, and we documented the workshops (n = 8) through field notes. We collected the data from January-October 2016. Data were analysed and coded into themes and subthemes using systematic text condensation. We reported the study in accordance with the COREQ checklist. FINDINGS: Public health nurses found photovoice useful in school nursing. The use of images offered pupils an active role in dialogues and more control in defining the topics and presenting their stories. When nurses allowed adolescents to bring images into conversations, they discovered new insights into public health promotion. The public health nurses pointed out the benefits and challenges of using new methods in practice. CONCLUSION: Public health nurses considered photovoice to be useful in health promotion and other public health issues. Involving pupils in bringing images to conversations offered them an active role and voice in health promotion. RELEVANCE TO CLINICAL PRACTICE: We recommend the use of photovoice and visual technologies (e.g., smartphones) in health promotion activities for adolescents.

Ethical challenges experienced by public health nurses related to adolescents' use of visual technologies.

BACKGROUND: Visual technologies are central to youth culture and are often the preferred communication means of adolescents. Although these tools can be beneficial in fostering relations, adolescents' use of visual technologies and social media also raises ethical concerns. AIMS: We explored how school public health nurses identify and resolve the ethical challenges involved in the use of visual technologies in health dialogues with adolescents. RESEARCH DESIGN: This is a qualitative study utilizing data from focus group discussions. PARTICIPANTS AND RESEARCH CONTEXT: We conducted focus group discussions using two semi-structured discussion guides with seven groups of public health nurses (n = 40) working in Norwegian school health services. The data were collected during January and October 2016. Discussions were audio recorded, transcribed, and coded into themes and subthemes using systematic text condensation. ETHICAL CONSIDERATIONS: The leader of the public health nursing service who agreed to provide access for the study and the Norwegian Center for Research Data that reviewed and approved the study. All participants gave informed consent. FINDINGS: In adolescents' use of visual materials with public health nurses, ethical concerns were raised regarding suicide ideations, socially unacceptable content, violation of privacy, and presentations of possible child neglect. The nurses utilized their professional knowledge and experience when identifying and navigating these ethical dilemmas; they resolved ethical uncertainties through peer discussion and collaboration with fellow nurses and other professionals. DISCUSSION: We discussed the findings in light of Annemarie Mol's interpretation of the ethics of care. Mol expands the notion of ethical care to include the action of technologies. CONCLUSION: Although the increasing use of visual technologies offered benefits, school nurses faced ethical challenges in health dialogues with adolescents. To address and navigate these ethical issues, they relied on their experience and caring practices based on their professional ethics. Uncertainties were resolved through peer dialogue and guidance.

Do Research Participants Trust Researchers or Their Institution?

Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants' perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indigenous participants. Thematic analysis was used to analyze the data. This article focuses on findings related to non-Indigenous participants. In contrast to Indigenous participants, non-Indigenous participants placed their trust in research institutions because of their systems of research ethics, their reputation and prestige. Researchers working in non-Indigenous contexts need to be cognizant that the trust that participants place in them is closely connected with the trust that participants have in the institution.

Primary care physicians' views about gatekeeping in clinical research recruitment: A qualitative study.

BACKGROUND: Clinical research is increasingly being undertaken in primary care settings. This development offers both benefits and challenges. The ethical challenges of occupying the roles of both clinician and researcher may be accentuated in primary care settings, where relationships are longer lasting and medical conditions are less acute. This article examines primary care physicians' experiences of undertaking research, particularly their decision making about recruiting patients in the context of their own dual roles. METHODS: This project comprised in-depth interviews with eight Australian primary care physicians working in general or specialist practices that were involved in clinical research. Data were analyzed using inductive thematic analysis. RESULTS: Physicians involved in recruiting their patients into clinical trials acted as gatekeepers; they were selective about which patients to recruit and did not necessarily approach all patients who met the research eligibility criteria. Physicians' accounts suggested they prioritized their clinician role over their researcher role. In addition to the rigor and merit of the research, physicians considered the possible benefit of trial participation for individual patients. Physicians described making recruitment decisions based on their perceived knowledge of patients' personal, behavioral, and attitudinal characteristics-often derived from their long-standing relationships with their patients. CONCLUSION: Our data show evidence of gatekeeping by primary care physicians when deciding to participate in, and recruit their patients to, clinical studies. We argue that such gatekeeping is a way of addressing the dual and sometimes conflicting roles of clinician and researcher. It need not be ethically problematic, but primary care physicians should be reflexive about their recruitment practices and biases. In addition, this form of gatekeeping should be explicitly recognized in protocol design and the analysis of trial findings.

Visual methods in health dialogues: A qualitative study of public health nurse practice in schools.

AIMS: We aimed to explore how using visual methods might improve or complicate the dynamics of the health dialogue between public health nurses (PHNs) and school pupils. This was done from the perspective of PHNs, specifically examining how they understood their role and practice as a PHN and the application of visual methods in this practice. BACKGROUND: The health dialogue is a method used by PHNs in school nursing in Norway. In this practice, there can be communicative barriers between pupils and PHNs. Investigating how PHNs understand their professional practice can lead to ways of addressing these communicative barriers, which can affect pupil satisfaction and achievement of health-related behaviours in the school context. Specifically, the use of visual methods by PHNs may address these communicative barriers. DESIGN: The research design was qualitative, using focus groups combined with visual methods. METHODS: We conducted focus group interviews using a semi-structured discussion guide and visual methods with five groups of PHNs (n = 31) working in northern Norwegian school health services. The data were collected during January and February 2016. Discussions were audio recorded, transcribed and coded into themes and sub-themes using systematic text condensation and drawings were analysed using interpretive engagement, a method of visual analysis. FINDINGS: Drawings and focus group discussions showed that PHNs perceived their professional practice as primarily a relational praxis. The PHNs used a variety of visual methods as part of the health dialogue with school pupils. This active use of visualization worked to build and strengthen relations when words were inadequate and served to enhance the flexible and relational practice employed by the PHNs. CONCLUSIONS: PHNs used different kinds of visualization methods to establish relations with school pupils, especially when verbalization by the pupils was difficult. PHNs were aware of both the benefits and challenges of using visualization with school pupils in health education. We recommend the use of visual methods in schools because they are useful for PHNs, other health professionals and teachers working with children and young people in developing relations, particularly where verbal communication may be a challenge.

Therapeutic appropriation: a new concept in the ethics of clinical research.

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of 'misunderstandings' that research participants may have. In this paper, we describe a new concept-therapeutic appropriation Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' clinical care, while simultaneously acknowledging the generalised research aims. To illustrate the concept of therapeutic appropriation, we draw on data from an interview study which we conducted to investigate the experiences of patients and general practitioners involved in clinical trials in primary care. We argue that therapeutic appropriation has two key elements: comprehension that the research project is not necessarily aiming to benefit participants and the deliberate use of incidental features of the research for personal therapeutic benefit of various kinds. We conclude that therapeutic appropriation is a useful concept that refines understanding of potential ethical problems in clinical research, and points to strategies to address them.

"Doing Trust".

Trust in research is important but not well understood. We examine the ways that researchers understand and practice trust in research. Using a qualitative research design, we interviewed 19 researchers, including eight researchers involved in Australian Indigenous research. The project design focused on sensitive research including research involving vulnerable participants and sensitive research topics. Thematic analysis was used to analyze the data. We found that researchers' understanding of trust integrates both the conceptual and concrete; researchers understand trust in terms of how it relates to other similar concepts and how they practice trust in research. This provides a sound basis to better understand trust in research, as well as identifying mechanisms to regain trust when it is lost in research.

"We're checking them out": Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research.

BACKGROUND: It is important for researchers to understand the motivations and decision-making processes of participants who take part in their research. This enables robust informed consent and promotes research that meets the needs and expectations of the community. It is particularly vital when working with Indigenous communities, where there is a history of exploitative research practices. In this paper, we examine the accounts of Australian Indigenous and non-Indigenous research participants in terms of how and why they agree to take part in research. METHODS: A qualitative research approach was employed to undertake individual interviews with 36 research participants in Victoria, Australia. Eight participants identified as Indigenous and 28 were non-Indigenous. Thematic analysis was used to interpret the data. RESULTS: There were stark differences between Indigenous and non-Indigenous research participants in terms of why and how they decided to participate in research. For Indigenous participants, taking part in research was primarily to benefit their communities rather than for personal interests. Indigenous participants often started from a position of caution, and showed a considered and deliberate process of decision making. In weighing up their decision to participate, some Indigenous participants clearly articulated what was valued in conducting research with Indigenous communities, for example, honesty, reciprocity, and respect; these values were explicitly used to assist their decision whether or not to participate. This was in contrast to non-Indigenous participants who took researchers' claims on face value, and for whom deciding to participate in research was relatively straightforward. The motivations to participate of non-Indigenous participants were due to personal interests, a desire to help others, or trust in the medical practitioner who recruited them for the research project. CONCLUSION: Understanding research participants' motivations about taking part in research is important. This is particularly relevant for Indigenous communities where there is a reported history of research abuse leading to mistrust. This understanding can lead to research practice that is more respectful and responsive to the needs of Indigenous communities and abides by the values of Indigenous communities. Moreover it can lead to more ethical and respectful research practice for all.

Participants' Understanding of Informed Consent in a Randomized Controlled Trial for Chronic Knee Pain.

This study explored participants' experiences of randomized controlled trial (RCT) participation to examine their understanding of the trial design and whether their consent was indeed informed. A nested qualitative interview study was conducted with 38 participants from a sample of 282 who participated in a complex RCT evaluating the effectiveness of laser compared with needle acupuncture for chronic knee pain. Overall participants had a good understanding of the RCT, and concepts such as randomization and placebo. Their experiences of being in the trial were largely positive, even if they did not experience any knee pain improvement. Their responses to unblinding at the end of the study were accepting. Participants had a good functional understanding of the RCT, sufficient for valid informed consent.

Exploring healthcare communication models in private physiotherapy practice.

OBJECTIVE: This project explored whether models of healthcare communication are evident within patient-physiotherapist communication in the private practice setting. METHODS: Using qualitative ethnographic methods, fifty-two patient-physiotherapist treatment sessions were observed and interviews with nine physiotherapists were undertaken. Data were analyzed using thematic analysis. RESULTS: In these clinical encounters physiotherapists led the communication. The communication was structured and focussed on physical aspects of the patient's presentation. These features were mediated via casual conversation and the use of touch to respond to the individual patient. Physiotherapists did not explicitly link their therapeutic communication style to established communication models. However, they described a purposeful approach to how they communicated within the treatment encounter. CONCLUSION: The communication occurring in the private practice physiotherapy treatment encounter is predominantly representative of a 'practitioner-centred' model. However, the subtle use of touch and casual conversation implicitly communicate competence and care, representative of a patient-centred model. Physiotherapists do not explicitly draw from theories of communication to inform their practice. PRACTICE IMPLICATIONS: Physiotherapists may benefit from further education to achieve patient-centred communication. Equally, the incorporation of casual conversation and the use of touch into theory of physiotherapy patient-centred communication would highlight these specific skills that physiotherapists already utilize in practice.

Emotions, narratives, and ethical mindfulness.

Clinical care is laden with emotions, from the perspectives of both clinicians and patients. It is important that emotions are addressed in health professions curricula to ensure that clinicians are humane healers as well as technical experts. Emotions have a valuable and generative role in health professional ethics education.The authors have previously described a narrative ethics pedagogy, the aim of which is to develop ethical mindfulness. Ethical mindfulness is a state of being that acknowledges everyday ethics and ethically important moments as significant in clinical care, with the aim of enabling ethical clinical practice. Using a sample narrative, the authors extend this concept to examine five features of ethical mindfulness as they relate to emotions: (1) being sensitized to emotions in everyday practice, (2) acknowledging and understanding the ways in which emotions are significant in practice, (3) being able to articulate the emotions at play during ethically important moments, (4) being reflexive and acknowledging both the generative aspects and the limitations of emotions, and (5) being courageous.The process of writing and engaging with narratives can lead to ethical mindfulness, including the capacity to understand and work with emotions. Strategies for productively incorporating emotions in narrative ethics teaching are described. This can be a challenging domain within medical education for both educators and health care students and thus needs to be addressed sensitively and responsibly. The potential benefit of educating health professionals in a way which addresses emotionality in an ethical framework makes the challenges worthwhile.

Revalidation: Patients or process? Analysis using visual data.

Revalidation is a significant recent regulatory policy reform from the UK General Medical Council and being considered elsewhere around the world. The policy aims to regulate licensed doctors to ensure that they are 'up-to-date and fit-to practise'. Fundamental to the policy is that the revalidation of doctors should benefit patients and improve doctor-patient relationships. As part of an evaluation of the development of revalidation, 31 policy makers involved in its development were interviewed in 2010-2011 and were asked to draw what revalidation meant to them. From this, 29 drawings were produced and this article focuses on their analysis. The drawings emphasised abstract systems and processes, with a distinct lack of interpersonal interactions or representation of individual patients and doctors. Only 3 of the 29 images included individual patients and doctors. This depersonalisation of policy is examined with respect to the purported key objective of revalidation to benefit patients. Using a distinctively different modality, the drawings serve to confirm the two key discourses of regulation and professionalism prevalent in the interview data, while highlighting the notable absence of the patient. The benefits and limitations of using drawings as a research method are discussed for a health policy context.

The role of emotions in health professional ethics teaching.

In this paper, we put forward the view that emotions have a legitimate and important role in health professional ethics education. This paper draws upon our experience of running a narrative ethics education programme for ethics educators from a range of healthcare disciplines. It describes the way in which emotions may be elicited in narrative ethics teaching and considers the appropriate role of emotions in ethics education for health professionals. We argue there is a need for a pedagogical framework to productively incorporate the role of emotions in health professional ethics teaching. We suggest a theoretical basis for an ethics pedagogy that integrates health professional emotions in both the experience and the analysis of ethical practice, and identify a range of strategies to support the educator to incorporate emotion within their ethics teaching.

Human research ethics committees: examining their roles and practices.

Considerable time and resources are invested in the ethics review process. We present qualitative data on how human research ethics committee members and health researchers perceive the role and function of the committee. The findings are based on interviews with 34 Australian ethics committee members and 54 health researchers. Although all participants agreed that the primary role of the ethics committee was to protect participants, there was disagreement regarding the additional roles undertaken by committees. Of particular concern were the perceptions from some ethics committee members and researchers that ethics committees were working to protect the institution's interests, as well as being overprotective toward research participants. This has the potential to lead to poor relations and mistrust between ethics committees and researchers.

Developing sensory awareness in qualitative interviewing: a portal into the otherwise unexplored.

Within the social sciences there has been an increased interest in the senses. Much of this work has focused on ethnographic methods and has concentrated on research about the senses. In this article we focus on interviews and examine the value of expanded interviewing strategies that use the senses as access points. We argue that a sensory awareness can enrich interviews by offering a portal to otherwise unexplored illness or health care experiences which are either too difficult to articulate or too intangible to describe. Sensory awareness incorporates not only attentiveness to the research environment but also the utilization of sensory questions or prompts to gain insight into the research experience. We draw from a variety of empirical studies, and offer methodological guidance to the researcher while exploring ethical and challenging aspects of incorporating sensory awareness into the research interview.

The narrative approach as a learning strategy in the formation of novice researchers.

Novice researchers must be trained to be ethical practitioners. This means more than just knowing how to gain ethics approval and being familiar with the codes of ethics. Rather, researchers need to develop their ethical awareness, perception, and judgment, and their capabilities to reflect and act when actually in the field, which we refer to as "situated research ethics." We employ the concept of "formation" as a useful pedagogical frame accentuating the importance of integrating knowledge, research skills, and ethical capabilities in research practice. We suggest that a narrative approach is consistent with formation, and is useful in research ethics training. This approach uses storytelling and engaging with stories to enable the development of ethical know-how in research. We conclude the article by focusing on the benefits and limitations of this approach.

Resources employed by health researchers to ensure ethical research practice.

There is little empirical evidence about what resources health researchers use in order to make decisions about the ethical conduct of human research. Undertaking an empirical examination of how researchers understand research ethics and how they address ethical issues in research practice can lead to a richer understanding of how researchers approach research ethics. Our findings are based on interviews with 54 Australian health researchers. We conclude that, despite the considerable time devoted to ethics review, ethics committees and research guidelines were not seen as valuable resources for researchers undertaking research in the field. Although researchers did not perceive ethics committees as a resource when faced with ethical issues in the field, they nevertheless perceived the process of ethics review as beneficial to them; this allowed them to clarify their research, make decisions about the ethical conduct of the research, as well as offering them a sense of protection when undertaking research. In the actual undertaking of research practice, it was their past professional experience and personal values that researchers considered most useful resources when encountering ethical problems.

Human research ethics in practice: deliberative strategies, processes and perceptions.

In theory, HREC members should use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans as the basis for their decisions, and researchers should design their research in accordance with these guidelines. However, very little is known about what researchers and HREC members actually do in practice. In this paper, we report some of the key findings of the study "Human Research Ethics in Practice", a qualitative interview-based study of health researchers and HREC members in Victoria. The findings shed light on how researchers and HREC members conceptualise ethics, how they use the National Statement, and what deliberative strategies they employ to assess the ethical appropriateness of research studies. The findings also reveal differences and similarities between health researchers' and HREC members' perceptions of the roles of HRECs, and point to some sources of misunderstanding and tension. We examine the implications of some of these findings for the ways in which HRECs carry out their task, and research institutions support and promote ethical conduct in research amongst their staff and students. The focus of this study is on health research, but we suggest that the findings are highly relevant to all other research areas where human participants are involved.