Women's Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The "Lives at Risk Study".

Breast cancer risk classifications are useful for prognosis, yet little is known of their effect on patients. This study clarified women's understandings of risk as they "journeyed" through the health care system. Breast cancer patients and women undergoing genetic investigation were recruited ( N = 25) from a large UK Health Board, 2014-2015, completing a "Book of Experience," and Bio-photographic elicitation interviews. Stakeholder and Participant Feedback Forums were undertaken with key stakeholders, including patients, oncologists, funders, and policy developers, to inform team understanding. Thematic and visual frameworks from multidisciplinary analysis workshops uncovered two themes: "Subjective Understandings of Risk" and "Journeying Toward an Unknown Future." Breast cancer patients and women undergoing investigation experienced risk intuitively. Statistical formulations were often perplexing, diverting attention away from concrete life-and-death facts. Following risk classification, care must be co-defined to reduce patients' foreboding about an unknown future, taking into consideration personal risk management strategies and aspirations for a cancer-free future.

Qualitative research and its methods in epilepsy: Contributing to an understanding of patients' lived experiences of the disease.

This review paper makes the case for the usefulness of qualitative research methods in the context of epilepsy research. It begins with an assessment of the current state of epilepsy literature and identifies gaps especially in the following: research in 'developing' countries and research around surgery for adults with epilepsy. It makes the case that disclosure of people's behaviors, actions, and reactions in different, often complex health-care situations can indicate how they bring meaning to their disease experiences and support needs. It shows the value of encouraging work that clarifies how patients manage their illness and how they understand changes in their health and well-being over the life course of their illness and how health-care professionals and other stakeholder groups care for those with epilepsy. The paper suggests a range of methods for addressing gaps in the literature and highlights a range of data collection, data analysis, and data interpretation and synthesis techniques that are appropriate in this context. It pays particular attention to the strengths of qualitative applications in mixed-methods research using an example from a recent ulcerative colitis drug trial that indicates how they can be integrated into study findings, add rich description, and enhance study outcomes. Ethnographic methodology is also presented, as a way of offering rare access to the 'lived experience' dimension, before the paper concludes with an assessment of the qualitative criteria of credibility, dependability, transferability, and confirmability for judging a study's 'trustworthiness'. The criteria evidence not only the trustworthiness of data and findings but also the ways in which a study has approached any challenges inherent in its research design.

Nominal Group Technique consultation of a Pulmonary Rehabilitation Programme.

OBJECTIVE: The purpose of the study was to determine what patients, professionals and significant others regarded as the most important positive- and challenging aspects of Pulmonary Rehabilitation Programmes for patients with Chronic Obstructive Pulmonary Disease (COPD) and to gain insight into how such programmes could be developed and improved. METHOD: A modified Nominal Group Technique method was used in three consultation workshops (one with COPD patients who had recently undertaken a Pulmonary Rehabilitation Programme; one with 'significant others' of the same patients; one with secondary care professionals who deliver the Pulmonary Rehabilitation Programme). RESULTS: Each of three workshops resulted in the production of approximately ten positive- and ten challenging aspects related to Pulmonary Rehabilitation Programmes.  These were further developed by a process of thematisation into seven broad themes.  The most important was ' the patient', followed by ' physical health'; jointly ranked as third were: ' mental health' and ' knowledge and education'.  ' The programme' and ' professional characteristics' were jointly ranked as fifth, with ' the future' being ranked as the least important theme. CONCLUSIONS: The modified Nominal Group Technique method allowed the development of a ranked thematic list that illustrated the important positive- and challenging aspects of Pulmonary Rehabilitation Programmes for patients with COPD. These themes should be core to planning future Pulmonary Rehabilitation Programmes, particularly if patients and carer views are to be considered.

Eleven themes of patient-centred professionalism in community pharmacy: innovative approaches to consulting.

OBJECTIVES: The study aimed to clarify patient-centred professionalism within and across community pharmacy settings; position that knowledge in a modern-day environment, accessing the opinions and experiences of patients and professionals; inform the literature on the value of consultation workshops within this context; and develop a template of positive and challenging exemplars of patient-centred professionalism within these contexts. METHODS: Thirty-nine study participants contributed to extended consultation workshops. Sessions were supported by bio-photographic data of healthcare practices across a range of different settings, and a final forum event. KEY FINDINGS: Thematic analysis of qualitative data, supported by the Nominal Group Work technique, led to a template containing 11 themes of positive and challenging aspects of patient-centred professionalism: safety, professional characteristics, relationships with patients, confidentiality and privacy, accessibility, training, professional pressures, services, environment, changing professional roles and patient characteristics. Themes, while descriptive and rich, highlight difficulties in defining this notion, which is both nuanced and ambiguous. While study participants were interested in the everyday examples of practice and interaction, they were strongly influenced by their different agendas and experiences. Patients, for example, wanted a quick and efficient dispensing service, where their needs and expectations came first. Pharmacists, on the other hand, found that pressing patient demands and overarching company policies led to professional anxiety that distracted them from what they perceived to be the defining aspect of their professionalism, dispensary work. CONCLUSIONS: The study outcomes indicate, in line with international literature, that while proud of supporting patients, many pharmacists feel demoralised, torn between pressing public and professional demands and the expectations of advice-giving in unfamiliar, formal situations within nondescript, corporate workspaces.

Obtaining consensus regarding patient-centred professionalism in community pharmacy: nominal group work activity with professionals, stakeholders and members of the public.

OBJECTIVES: The aim of this study was to develop a ranked thematic list encompassing the positive and negative exemplars of patient-centred professionalism in community pharmacy. METHODS: An adapted Nominal Group Work (NGW) method was used in six individual consultation workshops (two with established pharmacists, one with newly qualified pharmacists, one with pharmacy staff, one with stakeholders and one with members of the public) followed by a mixed-group forum event. KEY FINDINGS: Each of the six workshops resulted in the production of approximately 10 positive and 10 negative exemplars of patient-centred professionalism. The thematization of these exemplars allowed the development of 11 broad themes. The mixed-group forum event then provided a mechanism for ranking the importance of these themes. Safety, professional characteristics and relationships with patients were ranked as the most important themes by our study participants. CONCLUSIONS: The adapted NGW was a useful method to allow the development of a ranked thematic list that illustrated the important positive and negative exemplars of patient-centred professionalism in community pharmacy.

Narrating uncertainties about treatment of mental health conditions.

BACKGROUND: Integration of patient views in mental health service planning is in its infancy despite service provision being clearly dominated by narratives from professional consultations and medical records. We wished to clarify perceptions of uncertainty about mental health conditions from a range of provider and user perspectives (patients, carers, parents, mental health service providers) and understand the role of narratives in mental health research. AIMS: (1) To explore the utility of qualitative research methods, particularly narrative content analysis in mental health research, and (2) identify aspects of uncertainty in mental health service users and providers. MATERIAL: Four hundred and six free text responses were considered as one element of an existing questionnaire about uncertainties about mental health treatments, collected from mental healthcare users and providers through charities, the Mental Health Research Network in Wales, health professionals and websites. Free text responses were analysed using narrative content analysis, an elaborate and rigorous research technique that involves groups of analysts working independently and together over extended group sessions. FINDINGS: Three main themes emerged across respondent groups: "medication and treatment options", "objectification and marginalisation of patient" and "integrity of service delivery". Within these, patients embraced the opportunity to write about their illness at length, whilst carers' and parents' main concerns were about how patients were dealing with their illnesses, the services they were getting and the side effects of treatments. Carers and patients' parents perceived themselves to be the 'go-between', carrying messages between patients and professionals, in order to enable services to function. Mental health service providers and professionals considered uncertainties surrounding medication and treatment from an 'evidence-base' perspective, concentrating on medication choices and the adoption of new approaches to care rather than patient need and expectation. Patients wanted to know what alternatives were available to the drug regimes they were on and felt their opinions were rarely listened to. As a consequence patients felt marginalised by the health systems there to support them and by society as a whole. CONCLUSIONS: Narrative content analysis can help distil large amounts of free text data and enable their successful interpretation. Listening to patients' voices should become an integral part of routine service evaluation and may help bring patient expectation more in line with service organisation and delivery towards an optimal delivery of care.

Snapshots and snippets: general practitioners' reflections on professional space.

The paper presents the results of a mixed methods study of British general practitioners' (GPs) reflections on professional space in terms of practice and self-identity. Inter-textual content analysis of 12 biographic and photographic datasets revealed four themes: workspace, re-appropriated space, life space and sacred space. GPs are ambivalent about their working environments, spending time and energy creating 'best fit' spaces, until lack of function becomes an habituated part of daily routine. Whilst some appear helpless in the face of change, others are making their presence felt through embodied, personalized or authorial spaces.

From manila to monitor: biographies of general practitioner workspaces.

This article presents a study that explores how general practitioners (GPs) reflect on their workspaces and what that tells us about how professional practice is enacted. The study employed biography as its data collection method to enable three pilot and nine other GPs from the Swansea Region in the UK to write about their consulting rooms. Thematic analysis of biographies, employing individual and group analysis sessions, revealed eleven themes of GP workspace. These indicated that although a minority of the group were totally satisfied with their environments, most of the group spent time and energy finding ways of creating environments of 'best fit', thus enabling lack of function to become part of their daily routine.

No alternative? The regulation and professionalization of complementary and alternative medicine in the United Kingdom.

In conjunction with its growing popularity, complementary and alternative medicine (CAM) in the United Kingdom has witnessed increasing professionalization, partly prompted by the landmark Parliamentary Inquiry that reported in November 2000. Professionalization has become a significant strategy for practitioner associations and a key focus for the government, media, and patient groups. It is being driven by concern over the interests of patients and consumers, and in relation to the possible integration of certain forms of CAM into publicly funded healthcare. It is, moreover, being reconfigured in explicitly national terms. This paper draws on research into practitioner associations representing nine CAM modalities in the UK-aromatherapy, Chinese herbal medicine, chiropractic, crystal healing, feng shui, 'lay' homeopathy, medical homeopathy, osteopathy, and Radionics-, examining the recent wave of professionalization in relation to Foucault's concern with 'techniques of the self.' It highlights the contrasting experience of an association of Chinese herbalists seeking statutory self-regulation (SSR) and an association of chiropractors that was instrumental in securing SSR for chiropractic.