Negotiating the boundaries of the medical model: Experiences of people with epilepsy.

People with epilepsy (PWE) continually report dissatisfaction with the support they receive, particularly in regard to their psychological wellbeing. With its focus on optimal seizure control, epilepsy treatment is entrenched in the medical model of illness, despite growing evidence of the broader psychosocial impact of the condition. This study aimed to explore how PWE experience healthcare in the context of their lives. Semistructured interviews were conducted with thirty-nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis (IPA) was conducted, and three superordinate themes were identified. Firstly, "negotiating the space between health and illness" identified how participants rejected the illness identity and struggled with a treatment regime, which reminded them of the longevity of their condition. Secondly, "tensions in adopting a biomedical perspective" considered how medical professionals overlooked the negative side effects medication had on participants' lives, in favor of optimal seizure control. Thirdly, "the need for broader support" highlighted the additional psychosocial support PWE require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for PWE, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.

Epilepsy, identity, and the experience of the body.

Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.

Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.

Pathological archival tissue has been used as a source of research material for many years. The advancement in molecular techniques led to an escalated interest in genetic research on archival tissue. Research on archival tissue has been used without obtaining consents from patients, although the ethical justification for such a practice is unlikely to apply for genetic research that involves whole genome sequencing, for instance. Issues of confidentiality and patients' autonomy are being raised as institutions consider when approval for this type of research should be granted. In addition, patients' advocate is mandating some of these changes. In the context of the United Arab Emirates, this paper makes clear the current uncertainties arising from the use of archival tissue in genetic research, as it could be highly invasive of privacy interests and also fails to respect autonomous choice. It further explains what needs to change in order to support such research that is directed at promoting public good, but in a way that is not detrimental to the welfare of patients as research participants.

The experience of living with adult-onset epilepsy.

The incidence and prevalence of adults diagnosed with epilepsy is higher compared to those diagnosed in childhood, yet the experience of living with adult-onset epilepsy has rarely been examined. Hence, the current study took a phenomenological approach to examining the experience of living with epilepsy following diagnosis in adulthood. Semi-structured interviews were conducted with 39 people from across the UK, diagnosed with epilepsy between the ages of eighteen and sixty, at two points in time, six months apart. Phenomenological analysis identified three central themes: the unpredictability of seizure occurrence; the ripple effect; and re-evaluating the future. Despite the accepted consensus in the epilepsy literature that living and coping with epilepsy becomes more difficult the older a person is diagnosed, the current findings indicated that this is inadequate. Rather, it is more suitable to consider that those living with adult-onset epilepsy have a specific experience of the condition and particular support needs, given that they once lived their lives as people without epilepsy.

Reflections on leadership.

Webster's dictionary offers numerous synonyms and related words for the word lead; the list includes words such as chief, commanding, first, foremost, high, preeminent, controlling, directing, reigning, sovereign, and superior. Some individuals (perhaps too many) in positions of authority rely very heavily on characteristics associated with these terms. Abusive leaders exploit their power and "lead" through intimidation and their ability to withhold rewards and distribute punishment. This article explores why some people are bad bosses and suggests six obligations of leaders who aspire to fulfilling the role of leadership done right.

Treatment decision making in breast cancer: a longitudinal exploration of women's experiences.

OBJECTIVES: To explore the lived experience of breast cancer in relation to the treatment decision-making process over time. DESIGN: Adopting a hermeneutic phenomenological approach, semi-structured interviews were undertaken at three points in time during the year following diagnosis. METHODS: After ethical approval had been obtained, 20 women who were recently diagnosed with breast cancer were recruited from a Symptomatic Breast Cancer Unit in the North East of England. RESULTS: Four themes emerged: role in the treatment decision-making process; acceptance of medical opinions; getting rid of it; and cancer schemas. The majority of women reported a passive role in the surgical treatment decision-making process and all women did so in relation to subsequent treatment decisions. However, women adopted this role consciously and consequently were not disengaged from the process but maintained a sense of ownership and control over their health. The women did not describe experiencing decisional regret at any point in the year following diagnosis and rarely revisited the decisions made, only doing so in a positive manner. Trust in the abilities and experience of healthcare professionals and maximizing chances of survival were cited as reasons for not having had greater involvement. Despite being given information about treatment options, many women made the decision not to attend to this information perceiving this to be anxiety provoking. CONCLUSIONS: The findings from this study suggest a need for eliciting more specific psycho-social interactions in the treatment decision-making process in order to identify ways in which women can be supported throughout their experience.

Environmental scanning: allied health leaders' selection of strategic information.

In environmental scanning, deans and directors of allied health units face the task of making sense of volumes of information from their internal and external environments. A study was conducted to detail the information processing of 108 allied health deans and directors of institutional members of the Association of Schools of Allied Health Professions. The study was a survey that included basic demographic questions and two scenarios, each representing a strategic situation. Respondents (n = 56, 52%) rated their general perceptions of the two strategic situations and their projected use of eight types of information cues to clarify the situations. Results indicated that deans and directors had high use of all types of information cues in both strategic situations. The results for the strategic situation based on a scenario about program closure showed that use of negative information cues was associated with proportionally greater use of internal, external, and formal information cues (Pearson correlation coefficients r = 0.72, 0.80, and 0.77, respectively, all with p < 0.005). Some differences were found in types of information used by respondents in academic health centers versus non-academic health centers. The results of this study provide insights on how allied health deans and directors process information in environmental scanning.

Effect of ingested interferon-alpha on beta-cell function in children with new-onset type 1 diabetes.

OBJECTIVE: To evaluate the safety and efficacy of ingested human recombinant interferon-alpha (hrIFN-alpha) for preservation of beta-cell function in young patients with recent-onset type 1 diabetes. RESEARCH DESIGN AND METHODS: Subjects aged 3-25 years in whom type 1 diabetes was diagnosed within 6 weeks of enrollment were randomly assigned to receive ingested hrIFN-alpha at 5,000 or 30,000 units or placebo once daily for 1 year. The primary outcome was change in C-peptide secretion after a mixed meal. RESULTS: Individuals in the placebo group (n = 30) lost 56 +/- 29% of their C-peptide secretion from 0 to 12 months, expressed as area under the curve (AUC) in response to a mixed meal. In contrast, children treated with hrIFN-alpha lost 29 +/- 54 and 48 +/- 35% (for 5,000 [n = 27] and 30,000 units [n = 31], respectively, P = 0.028, ANOVA adjusted for age, baseline C-peptide AUC, and study site). Bonferroni post hoc analyses for placebo versus 5,000 units and placebo versus 30,000 units demonstrated that the overall trend was determined by the 5,000-unit treatment group. Adverse events occurred at similar rates in all treatment groups. CONCLUSIONS: Ingested hrIFN-alpha was safe at the doses used. Patients in the 5,000-unit hrIFN-alpha treatment group maintained more beta-cell function 1 year after study enrollment than individuals in the placebo group, whereas this effect was not observed in patients who received 30,000 units hrIFN-alpha. Further studies of low-dose ingested hrIFN-alpha in new-onset type 1 diabetes are needed to confirm this effect.

"Maybe it could be a heart attack . . . but i'm only 31": Young men's lived experience of myocardial infarction--an exploratory study.

This study examines the lived experience of myocardial infarction (MI) in younger men. Seven men, aged between 32 and 58, all of whom had suffered MI within the previous 12 months, were interviewed. Thematic analysis of the interview transcripts revealed four main themes. The themes were "disillusionment with life," "tension and stress," "keeping up appearances," and "invincibility." Collectively the four themes reflected the complexities, subtleties, and consensus of the experiences of these younger men who have survived MI. This study reveals that the individuals within the authors' sample appear to allude to the ideal or hegemonic form of masculine identity. Utilization of a qualitative approach with this younger male sample has enabled the authors to elicit the defining features of their experience as identified by themselves. Implications for these findings are discussed.

'Nobody likes a back bore'--exploring lay perspectives of chronic pain: revealing the hidden voices of nonservice users.

Chronic pain is pain that persists beyond 12 weeks or that lasts beyond the expected duration of healing. The chronic pain sufferer also often experiences associated anxiety, depression and stress. An exploratory qualitative approach was adopted by the authors to explore what it is like to live with chronic pain from a sample of people who had not accessed secondary or tertiary health services. Semi-structured interviews were undertaken utilizing a 'snowball' sample of 12 participants. The complex issues presented by living with chronic pain that face sufferers in their personal and social worlds emerged from participant narratives. Three main themes which reflected individual variation in the ways that participants' had adapted to their pain were extracted from the data: dependence and social withdrawal; being 'normal' in comparison to others; and striving for self-management. Issues of coping and control were related to the theme of self-management. By capturing the voices of a previously unheard group our findings support and extend previous research by detailing the difficulties that need to be overcome by sufferers to finally accept the persistence of their pain. Moreover, it is this acceptance of, and adaptation to their pain, that may distinguish the participants in our sample from the majority of pain sufferers who engage and re-engage with secondary and tertiary healthcare facilities.

'Why can't they do anything for a simple back problem?' A qualitative examination of expectations for low back pain treatment and outcome.

In order to examine expectations for pain treatment and outcome and to determine whether they are influential in maintaining health service consumption 16 adults suffering from chronic pain were interviewed. Transcripts were subjected to thematic analysis. The six main themes to emerge were labelled: Unmet Expectations; Health Professionals; the Importance of Self; Getting Something Done; Back to Square One; and Perceptions of the Future with Ruminations on the Past. Participants revealed considerable agency as they continued in a quest to engage and re-engage with the gatekeepers of health care facilities. The implications for pain management providers are discussed.

Persistent clusters of mortality in the United States.

We explored how place shapes mortality by examining 35 consecutive years of US mortality data. Mapping age-adjusted county mortality rates showed both persistent temporal and spatial clustering of high and low mortality rates. Counties with high mortality rates and counties with low mortality rates both experienced younger population out-migration, had economic decline, and were predominantly rural. These mortality patterns have important implications for proper research model specification and for health resource allocation policies.

Short-term prospective memory deficits in chronic back pain patients.

OBJECTIVE: Chronic pain, particularly low back pain, is widespread. Although a great deal is known about the impact that this has on quality of life and physical activity, relatively little has been established regarding the more cognitive effects of pain. This study aims to find out whether individuals with chronic pain experience memory deficits in prospective memory (PM), the process of remembering to do things at some future point in time. Examples of PM include remembering to keep an appointment, such as a visit to a clinic, or to perform a particular task, such as paying a bill on time. METHODS: The PM of 50 participants with chronic pain was compared with 50 pain-free participants. Each participant completed the Prospective Memory Questionnaire, which assesses three aspects of prospective memory (short-term habitual, long-term episodic, and internally cued), and records the use of strategies to aid remembering. RESULTS: In comparison to those not in pain, participants with chronic pain had significantly impaired short-term prospective memory, an effect which was evident even after co-varying use of analgesics and other drugs. CONCLUSIONS: These findings provide new insights into prospective memory dysfunction in people with chronic pain. Possible mechanisms for this dysfunction are discussed and suggestions for future research given.

Connecting allied health students to rural communities.

CONTEXT: Statewide studies indicate a continuing shortfall of personnel in several allied health disciplines in rural Georgia. National trends indicate lagging enrollment in allied health education programs, suggesting that the workforce shortages will worsen. PURPOSE: This article describes the efforts of the School of Allied Health Sciences at the Medical College of Georgia to increase allied health student participation in interdisciplinary health care services in rural areas of the state during fiscal years 2001-2003. METHODS: Brief program description and results from survey data provided by the student participants, program administrators, and clinical site supervisors. RESULTS: Three-year totals indicate that 98 students (70 female, 28 male) participated and 42% reported low-income status. In line with the goals of the grant, the proportion of minority student participants steadily increased from 5% to 12% over the 3-year period. Rotation locations included 62 designated Health Professional Shortage Area counties, 71 federally designated Rural Health Clinics, and 6 Community Health Clinics. At the conclusion of the students' rural health care experience, 76% (55/72) responded positively when asked: If you had the opportunity, would you accept employment at the rotation health care site? CONCLUSIONS: The project appears to be positively affecting allied health students' perceptions and opinions of rural health practices and willingness to work in rural areas. Although long-term goals have yet to be accomplished, early indicators show benefits to the students and the community at-large, suggesting that the current program strategies are appropriate connectors between allied health students and rural communities.

Prior elevation of IL-18 promotes rapid early IFN-gamma production during staphylococcal infection.

Systemic Staphylococcus aureus infection is associated with significant morbidity and mortality arising from both bacterial and host immune factors. IL-18 is a pro-inflammatory cytokine of the IL-1 superfamily that exhibits broad functional effects in innate and acquired immune responses and which has been found in high levels in several chronic inflammatory and autoimmune diseases. Over-expression of IL-18 may promote early resolution of infection or could promote a detrimental exaggerated immune response. This was explored in a model of S. aureus infection. We report increased mortality in Swiss mice that were given recombinant IL-18 prior to inoculation with S. aureus LS-1. IL-18 administration prior to infection induced preferentially enhanced IFN-gamma mRNA expression in peripheral blood leukocytes and spleen, especially splenic NK cells. This correlated with increased IFN-gamma protein detection in serum, and leukocyte and spleen cultures at subsequent discrete time points. These data suggest that increased mortality following gram-positive infection in autoimmune diseases could in part reflect the impact of high levels of pleiotropic pro-inflammatory cytokines such as IL-18 present prior to the onset of infection.

A brief visual primer for the mapping of mortality trend data.

Maps are increasingly used to visualize and analyze data, yet the spatial ramifications of data structure are rarely considered. Data are subject to transformations made throughout the research process and then used to map, visualize and conduct spatial analysis. We used mortality data to answer three research questions: Are there spatial patterns to mortality, are these patterns statistically significant, and are they persistent across time? This paper provides differential spatial patterns by implementing six data transformations: standardization, cut-points, class size, color scheme, spatial significance and temporal mapping. We use numerous maps and graphics to illustrate the iterative nature of mortality mapping, and exploit the visual nature of the International Journal of Health Geographics journal on the World Wide Web to present researchers with a series of maps.

Detection of cytoplasmic CD antigens within normal human peripheral blood leucocytes.

Polymorphonuclear neutrophils (PMNs) are capable of synthesizing various pro-inflammatory cytokines which may indirectly influence specific immune responses. PMNs may also have the capacity to present foreign peptides to helper T cells (Th cells). In support of this hypothesis, recent studies have shown that neutrophils, when activated by the correct combination of cytokines, can be induced to express cell surface major histocompatibility complex (MHC) Class II (DR) antigen, CD80 (B7.1) and CD86 (B7.2): molecules required for antigen presentation and subsequent T-cell activation. In this study we have used normal "resting" human peripheral blood neutrophils and demonstrated, using a mild fixation and permeabilization protocol, significant cytoplasmic "stores" of these molecules known to be important in antigen presentation. Cytoplasmic MHC Class II antigen was found with two out of 20 normal donors tested whereas cytoplasmic CD80 and CD86 were found to a variable extent within all normal donors. Surprisingly, we also found several other neutrophil cytoplasmic CD antigens more commonly associated with B cells, i.e. CD20, CD21 (CR2/EBV-R) and CD22 (BL-CAM). All of these antigens were confined to the "resting" cell cytoplasm and were never found to be expressed on the cell surface. To exclude the possibility that these antigens were absorbed from plasma and to provide evidence for active synthesis, we used a novel whole blood in situ hybridization flow cytometry assay method to detect mRNA specific for these antigens within normal PMNs. We also conducted real-time polymerase chain reactions to confirm these findings using CD22 as a good example of an "inappropriately expressed" CD antigen. These observations therefore provide support for the hypothesis that human PMNs have the potential to express molecules required for antigen presentation and cell signalling.