Guy Widdershoven

Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams:

Patients are increasingly actively involved in research. We depart from an approach that understands patient participation as dialogue. This idea is grounded in hermeneutic philosophy and responsive research. Patients are engaged in research via dialogues with other stakeholders. New is the inclusion of patients as research partners. Several methodological notions underpin responsive research. In two health research agenda-setting processes (intellectual disability and kidney disease), these notions have been applied and refined for collaboration with research partners in mixed research teams. The findings demonstrate that equal partnerships include involvement in all research activities from beginning to end, a focus on experiential knowledge, mutual learning, openness, and respect. Mutual learning processes help to overcome stereotypes and handle tensions. Other experiences include the financial reimbursement of research partners, and the necessity of an acceptable workload and scheme. The collaboration might then have a surplus value for the research process and for those involved.

EMPIRICAL ETHICS AS DIALOGICAL PRACTICE

In this article, we present a dialogical approach to empirical ethics, based upon hermeneutic ethics and responsive evaluation. Hermeneutic ethics regards experience as the concrete source of moral wisdom. In order to gain a good understanding of moral issues, concrete detailed experiences and perspectives need to be exchanged. Within hermeneutic ethics dialogue is seen as a vehicle for moral learning and developing normative conclusions. Dialogue stands for a specific view on moral epistemology and methodological criteria for moral inquiry. Responsive evaluation involves a structured way of setting up dialogical learning processes, by eliciting stories of participants, exchanging experiences in (homogeneous and heterogeneous) groups and drawing normative conclusions for practice. By combining these traditions we develop both a theoretical and a practical approach to empirical ethics, in which ethical issues are addressed and shaped together with stakeholders in practice. Stakeholders experiences are not only used as a source for reflection by the ethicist; stakeholders are involved in the process of reflection and analysis, which takes place in a dialogue between participants in practice, facilitated by the ethicist. This dialogical approach to empirical ethics may give rise to questions such as: What contribution does the ethicist make? What role does ethical theory play? What is the relationship between empirical research and ethical theory in the dialogical process? In this article, these questions will be addressed by reflecting upon a project in empirical ethics that was set up in a dialogical way. The aim of this project was to develop and implement normative guidelines with and within practice, in order to improve the practice concerning coercion and compulsion in psychiatry.

What Does It Mean to Be a Patient Research Partner? An Ethnodrama

There is a trend in medical and health research to involve patients in the research process. A recent role is the patient acting as a research partner in a team of professionals. There are a few publications about these collaborations and the value of research partners. But is the research partner accepted as a credible knower? How can equality in the collaboration be reached? And how to handle tensions between the research partner’s personal agenda and the interests of and burdens on fellow patients? Finally there is the question of how the research influences the research partner’s self-perception. The purpose of this article is to investigate these epistemological, relational, ethical, and existential issues, while presenting an ethnodrama. In this drama, the personal narrative of the research partner, a person with a renal disease, unfolds in dialogue with her research mates, whose voices are also present in the text. The article is based on a health research agenda—setting process with the Kidney Association in the Netherlands.

Bringing gender sensitivity into healthcare practice: A systematic review

OBJECTIVEnDespite the body of literature on gender dimensions and disparities between the sexes in health, practical improvements will not be realized effectively as long as we lack an overview of the ways how to implement these ideas. This systematic review provides a content analysis of literature on the implementation of gender sensitivity in health care.nnnMETHODSnLiterature was identified from CINAHL, PsycINFO, Medline, EBSCO and Cochrane (1998-2008) and the reference lists of relevant articles. The quality and relevance of 752 articles were assessed and finally 11 original studies were included.nnnRESULTSnOur results demonstrate that the implementation of gender sensitivity includes tailoring opportunities and barriers related to the professional, organizational and the policy level. As gender disparities are embedded in healthcare, a multiple track approach to implement gender sensitivity is needed to change gendered healthcare systems.nnnCONCLUSIONnConventional approaches, taking into account one barrier and/or opportunity, fail to prevent gender inequality in health care. For gender-sensitive health care we need to change systems and structures, but also to enhance understanding, raise awareness and develop skills among health professionals.nnnPRACTICE IMPLICATIONSnTo bring gender sensitivity into healthcare practice, interventions should address a range of factors.

Case analysis in clinical ethics

Case Analysis in Clinical Ethics is an eclectic review from a team of leading ethicists covering the main methods for analysing ethical problems in modern medicine. Anneke Lucassen, a clinician, begins by presenting an ethically challenging genetics case drawn from her clinical experience. It is then analysed from different theoretical points of view. Each ethicist takes a particular approach, illustrating it in action and giving the reader a basic grounding in its central elements. Each chapter can be read on its own, but comparison between them gives the reader a sense of how far methodology in medical ethics matters, and how different theoretical starting points can lead to different practical conclusions. At the end, Anneke Lucassen gives a clinicians response to the various ethical methods described.

Palliative sedation: not just normal medical practice. Ethical reflections on the Royal Dutch Medical Association's guideline on palliative sedation

The main premise of the Royal Dutch Medical Associations (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guidelines argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guidelines main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of the guideline that are used to support this premise: (1) the patients life expectancy should not exceed 2u2005weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline.

Hand Transplants and Bodily Integrity

In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one’s physical body. Bodily mutilations, such as the loss of a hand, may severely affect one’s bodily integrity. A possible restoration of one’s experience of wholeness requires a process of re-identification. Medical interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has.

Process evaluation of a diversity training program: the value of a mixed method strategy

Patients health and health needs are influenced by categories of difference like sex, gender, ethnic origin and socioeconomic status (SES). To enhance awareness of this diversity among patients and to provide holistic care for them, health professionals should first be aware of the relation between dimensions of diversity and patients health and health demands. This paper presents a formative process evaluation of a diversity sensitivity training programme for healthcare professionals. The training was implemented in three healthcare settings (mental healthcare, nursing home and hospital care). Mixed methods were used to monitor the implementation of the training and its effects after three years. Findings demonstrate that the training stimulated participants awareness, knowledge and critical attitudes towards diversity. Their motivation and willingness to take action regarding diversity was also enhanced. Yet these developments were less apparent among nursing home participants who felt less satisfied and did not develop a critical perspective on this issue. Qualitative data were helpful to explain differences between the settings. By means of the combination of quantitative and qualitative data, we can conclude that individual learning was not enough to guarantee a sensitive approach to diversity at the organizational level.

The use of Grounded theory in palliative care: methodological challenges and strategies

BACKGROUNDnThe need for research methods that are suited to evaluate important issues and phenomena in palliative care has established different qualitative research approaches during the last years. This article describes the use and adaptation of a qualitative research methodology in a palliative care setting.nnnRESEARCH PROCESSnThe wish for hastened death of terminally ill patients is an important end-of-life issue. Proponents of palliative care have argued that good palliative care would prevent the wish for hastened death. However, this wish is stated by a few patients receiving palliative care, raising a challenging dilemma for patients, relatives and caregivers involved. In order to investigate the motivations of the patients asking for hastened death, we conducted a qualitative study using Grounded theory (GT). This article aims to illustrate the use of a flexible, less burdening qualitative research method and the adaptation of the research process of GT in a palliative care research setting. This is based on experiences and illustrated by examples from the qualitative study on the wish for hastened death in patients receiving palliative care.nnnCONCLUSIONSnGT allowed a systematic understanding of patients experiences and attitudes and careful in-depth exploration of this vulnerable population. Conducting a GT study needs high staff resources, a great catchment area for participant recruitment and realistic inclusion and exclusion criteria to allow for theoretical sampling. The use of GT should be facilitated by an experienced researcher familiar with this method because of high methodological requirements and rather complex analysis procedures.

Autonomy through identification: a qualitative study of the process of identification used by people with type 2 diabetes

AIMS AND OBJECTIVESnThe aim of this study is to clarify the process of identification with diabetes as a dimension of autonomy as described by people with type 2 diabetes.nnnBACKGROUNDnPeople with type 2 diabetes view autonomy as competency in shaping ones life. This concept of autonomy has seven dimensions, which emerged as categories in prior research. Dynamic processes shape these dimensions of autonomy. One of the dimensions of autonomy is identification.nnnMETHODnThis study has a qualitative descriptive and exploratory design and an inductive approach as described in grounded theory. Data were collected by means of in-depth interviews. The sample consisted of 15 people with type 2 diabetes mellitus in a nurse-led, shared-care setting in the Netherlands.nnnRESULTSnThe phases of identification are comprehending, struggling, evaluating and mastering. Each phase has its own characteristics. Identifying with the diabetes is a non-linear, cyclical and continuous process because people with diabetes have to deal with changing conditions.nnnCONCLUSIONnThe dynamics of identification is directed to a process of identifying with diabetes and its care requirement. Recognizing identification as an element of autonomy enables nurses to adopt a more patient-oriented view of autonomy.nnnRELEVANCE TO CLINICAL PRACTICEnNursing that fosters the process of identification promotes autonomy. This implies that a person with diabetes should be able to identify with the nurses interventions. Hence it is vital that nurses build supportive partnerships when providing care for such a patient.