David Wilde

Overcoming the challenges to consumer involvement in cancer research.

Introduction  Within the last decade, there have been many government initiatives to promote consumer involvement in research, especially in cancer. At the same time, the number and influence of consumer groups themselves have expanded. However, the organizational infrastructure necessary to facilitate consumer involvement has not been developed. Consequently, consumer involvement has tended to remain essentially localized and project driven, with no strategic or regional lead.

Palliative care research protocols: a special case for ethical review?:

Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care research. Interviews were transcribed and analysed using a grounded theory approach. Most respondents said each protocol was reviewed on its own merits, according to broad ethical principles, but were equivocal as to whether palliative care protocols posed particular or different challenges compared to those from other specialties. Respondents said they reviewed only a small number of palliative care protocols, and that they were less experienced with some of the study methods utilized, particularly qualitative designs. Four main themes emerged from the analysis. Respondents expressed concerns about the protocol itself – in regard to safeguarding the principles of autonomy and justice. There were concerns about how the research would be carried out, especially the protection of patients and the influence and input of the researcher in the process. The third theme concerned the impact of the research on the participant, particularly intrusion, potential distress and the existence of support mechanisms. Fourthly, respondents identified patient groups receiving palliative care (children, the elderly, bereaved families, patients in intensive therapy units, and those from ethnic groupings), who they considered might be particularly vulnerable.

The Pictor Technique: A Method for Exploring the Experience of Collaborative Working

Collaborative working is a crucial part of contemporary health and social care. Researching the experiences of those involved—as professionals, patients, or carers—is challenging, given the complexity of many cases and the taken-for-granted nature of roles and identities in relation to it. In this article we introduce the Pictor technique for exploring experiences of collaborative working. This is a visual technique in which participants construct a representation of roles and relationships in a particular case using arrow-shaped adhesive notes or cards. The chart so produced helps the participant tell the story of his or her experience and serves as a focus for further exploration with the researcher. We describe the background to Pictor and illustrate its use with professionals, patients, and carers, drawing on recent and current research. We examine how Pictor relates to other visual methods, and conclude by considering how the technique might be developed in the future.

Why do hospital mastectomy rates vary? Differences in the decision-making experiences of women with breast cancer

Background:Hospital mastectomy rates vary. This study explores the relationship between mastectomy rates and breast cancer patients’ consultation and decision-making experiences with specialist clinicians.Methods:Qualitative semi-structured interviews were conducted with 65 patients from three purposively selected breast units from a single UK region. Patients provided with a choice of breast cancer surgery (breast conservation therapy (BCT) or mastectomy) were purposively recruited from high, medium and low case-mix-adjusted mastectomy rate units.Results:Low mastectomy rate unit patients’ consultation and decision-making experiences were markedly different to those of the medium and high mastectomy rate breast units. Treatment variation was associated with patients’ perception of the most reassuring and least disruptive treatment; the content and style of information provision (equipoise or directed); level of patient participation in decision making; the time and process of decision making and patient autonomy in decision making. The provision of more comprehensive less directive information and greater autonomy, time and support of independent decision making were associated with a lower uptake of BCT.Conclusion:Variation in hospital mastectomy rates was associated with differences in the consultation and decision-making experiences of breast cancer patients. Higher mastectomy rates were associated with the facilitation of more informed autonomous patient decision making.

The evolving self: finding meaning in near-death experiences using Interpretative Phenomenological Analysis

Near-death experiences (NDEs) have become a topic of increasing interest to medical and psychological researchers over the last 35 years. During the course of this research agenda, several studies have focused on the phenomenology of the experience and its after-effects, mostly from a nomothetic stance. The aim of this study was to investigate the experience of having an NDE and what meaning NDErs attribute to that experience and its resultant after-effects by taking an idiographic, phenomenological approach. Three female participants took part in recorded face-to-face, semi-structured interviews. Interpretative Phenomenological Analysis found that to more deeply understand the impact of NDEs it is crucial to consider how the experience fits within the biographical context of an individuals life. Rather than being an overall influence on personal and spiritual growth, individuals may choose elements of an experience which are most personally meaningful for them and take that into their later lives. Each participant in some way came to a new understanding in their lives as a result of their NDE. In addition, the process of integration was helped or hindered by physical and psychological factors concomitant at the time of the NDE. Also evident were the challenges the NDE, or elements therein, have on the individuals sense of self and how they maintain and develop that self in the years succeeding the event.

Interpreting the Anomalous: Finding Meaning in Out-of-Body and Near-Death Experiences

Much contemporary research on anomalous experiences has been focused on issues of confirming the authenticity of the phenomena, or to determine the underlying processes by which these phenomena may manifest themselves. This research has largely been nomothetic in nature relying mainly on laboratory experiments and/or questionnaire surveys. Traditionally, however, there has existed a third strand of exploration in this field of study–phenomenological research—which in recent times has been somewhat overlooked in this field of work. In an attempt to redress this shortcoming, the authors propose the use of Interpretative Phenomenological Analysis (IPA) to research anomalous experience. IPA possesses strong theoretical and philosophical underpinnings and a focus on describing and interpreting the process, intricacy and novelty of personal experience. The authors argue that IPA appears ideally suited as a method of qualitative investigation to address important fundamental research questions posed by the study of anomalous experiences.

“Go Make Your Face Known”: Collaborative Working through the Lens of Personal Relationships

Background: Collaborative working between professionals is a key component of integrated care. The academic literature on it largely focuses either on integration between health and social care or on the dynamics of power and identity between doctors and nurses. With the proliferation and extension of nursing roles, there is a need to examine collaborative working amongst different types of nurses. Method: This study explored experiences of collaborative working amongst generalist and specialist nurses, in community and acute settings. We carried out semi-structured interviews, incorporating the Pictor technique, with 45 nurses, plus 33 other key stakeholders. Transcripts were analysed using Template Analysis. This article focuses on one major thematic area that emerged from the analysis: the significance of interpersonal relationships amongst nurses, and between them and other professionals, patients and carers. Results: Relationship issues were ubiquitous in participants’ accounts of collaborative working. Good personal relationships facilitated collaboration; face-to-face interaction was especially valued. Relationships were recognized as requiring effort, especially in new roles. Organisational changes could disrupt productive personal networks. Conclusion: Relationship issues are integral to successful collaborative working. Policy and practice leaders must take this into account in future service developments. Further research into collaborative relationships in different settings is needed.